Naseem S. Miller – The Journalist's Resource https://journalistsresource.org Informing the news Mon, 29 Jul 2024 20:03:54 +0000 en-US hourly 1 https://wordpress.org/?v=6.5.5 https://journalistsresource.org/wp-content/uploads/2020/11/cropped-jr-favicon-32x32.png Naseem S. Miller – The Journalist's Resource https://journalistsresource.org 32 32 Driving under the influence of marijuana: An explainer and research roundup https://journalistsresource.org/health/marijuana-driving/ Mon, 29 Jul 2024 20:02:39 +0000 https://journalistsresource.org/?p=76286 As marijuana legalization sweeps the U.S., researchers and policymakers are grappling with a growing public safety concern: marijuana-impaired driving. We explain the challenges and what the research shows.

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Update 1: On May 16, 2024, the U.S. Department of Justice sent a proposed rule to the Federal Register to downgrade marijuana from a Schedule I to a Schedule III drug. This is the first step in a lengthy approval process that starts with a 60-day comment period.

Update 2: Two recent research studies were added to the “Studies on marijuana and driving” section of this piece on July 18, 2024.

As marijuana use continues to rise and state-level marijuana legalization sweeps the U.S., researchers and policymakers are grappling with a growing public safety concern: marijuana-impaired driving.

As of April 2023, 38 U.S. states had legalized medical marijuana and 23 had legalized its recreational use, according to the National Conference of State Legislatures. Recreational or medical marijuana measures are on the ballot in seven states this year.

The issue of marijuana-impaired driving has not been an easy one to tackle because, unlike alcohol, which has well-established thresholds of impairment, the metrics for marijuana’s effects on driving remain rather elusive.

“We don’t have that kind of deep knowledge right now and it’s not because of lack of trying,” says Dr. Guohua Li, professor of epidemiology and the founding director of the Center for Injury Science and Prevention at Columbia University.

“Marijuana is very different from alcohol in important ways,” says Li, who has published several studies on marijuana and driving. “And one of them is that the effect of marijuana on cognitive functions and behaviors is much more unpredictable than alcohol. In general, alcohol is a depressant drug. But marijuana could act on the central nervous system as a depressant, a stimulant, and a hallucinogenic substance.”

Efforts to create a breathalyzer to measure the level of THC, the main psychoactive compound found in the marijuana plant, have largely failed, because “the THC molecule is much bigger than ethanol and its behavior after ingestion is very different from alcohol,” Li says.

Currently, the two most common methods used to measure THC concentration to identify impaired drivers are blood and saliva tests, although there’s ongoing debate about their reliability.

Marijuana, a term interchangeably used with cannabis, is the most commonly used federally illegal drug in the U.S.: 48.2 million people, or about 18% of Americans reported using it at least once in 2019, according to the latest available data from the Centers for Disease Control and Prevention. Worldwide, 2.5% of the population consumes marijuana, according to the World Health Organization.

Marijuana is legal in several countries, including Canada, where it was legalized in 2018. Despite state laws legalizing cannabis, it remains illegal at the federal level in the U.S.

As states grapple with the contentious issue of marijuana legalization, the debate is not just about public health, potential tax revenues and economic interests. At the heart of the discussion is also the U.S. criminal justice system.

Marijuana is shown to have medicinal qualities and, compared with substances like alcohol, tobacco, and opioids, it has relatively milder health risks. However, it’s not risk-free, a large body of research has shown.

Marijuana consumption can lead to immediate effects such as impaired muscle coordination and paranoia, as well as longer-term effects on mental health and cognitive functions — and addiction. As its use becomes more widespread, researchers are trying to better understand the potential hazards of marijuana, particularly for younger users whose brains are in critical stages of development.

Marijuana and driving

The use of marijuana among drivers, passengers and pedestrians has increased steadily over the past two decades, Li says.

Compared with the year 2000, the proportion of U.S. drivers on the road who are under the influence of marijuana has increased by several folds, between five to 10 times, based on toxicology testing of people who died in car crashes, Li says.

A 2022 report from the National Transportation Safety Board finds alcohol and cannabis are the two most commonly detected drugs among drivers arrested for impaired driving and fatally injured drivers. Most drivers who tested positive for cannabis also tested positive for another potentially impairing drug.

“Although cannabis and many other drugs have been shown to impair driving performance and are associated with increased crash risk, there is evidence that, relative to alcohol, awareness about the potential dangers of driving after using other drugs is lower,” according to the report.

Indeed, many U.S. adults perceive daily marijuana use or exposure to its smoke safer than tobacco, even though research finds otherwise.

Several studies have demonstrated marijuana’s impact on driving.

Marijuana use can reduce the drivers’ ability to pay attention, particularly when they are performing multiple tasks, research finds. It also slows reaction time and can impair coordination.

“The combination is that you potentially have people who are noticing hazards later, braking slower and potentially not even noticing hazards because of their inability to focus on competing things on the road,” says Dr. Daniel Myran, an assistant professor at the Department of Family Medicine and health services researcher at the University of Ottawa.

In a study published in September in JAMA Network Open, Myran and colleagues find that from 2010 to 2021 the rate of cannabis-involved traffic injuries that led to emergency department visits in Ontario, Canada, increased by 475%, from 0.18 per 1,000 traffic injury emergency department visits in 2010 to 1.01 visits in 2021.

To be sure, cannabis-involved traffic injuries made up a small fraction of all traffic injury-related visits to hospital emergency departments. Out of 947,604 traffic injury emergency department visits, 426 had documented cannabis involvement.

Myran cautions the increase shouldn’t be solely attributed to marijuana legalization. It captures changing societal attitudes toward marijuana and acceptance of cannabis use over time in the lead-up to legalization. In addition, it may reflect an increasing awareness among health care providers about cannabis-impaired driving, and they may be more likely to ask about cannabis use and document it in medical charts, he says.

“When you look at the 475% increase in cannabis involvement in traffic injuries, rather than saying legalizing cannabis has caused the roads to be unsafe and is a public health disaster, it’s that cannabis use appears to be growing as a risk for road traffic injuries and that there seem to be more cannabis impaired drivers on the road,” Myran says. “Legalization may have accelerated this trend. Faced with this increase, we need to think about what are public health measures and different policy interventions to reduce harms from cannabis-impaired driving.”

Setting a legal limit for marijuana-impaired driving

Setting a legal limit for marijuana-impaired driving has not been easy. Countries like Canada and some U.S. states have agreed upon a certain level of THC in blood, usually between 1 to 5 nanograms per milliliter. Still, some studies have found those limits to be weak indicators of cannabis-impaired driving.

When Canada legalized recreational marijuana in 2018, it also passed a law that made it illegal to drive with blood THC levels of more than 2 nanograms. The penalties are more severe for blood THC levels above 5 nanograms. The blood test is done at the police station for people who are pulled over and are deemed to be drug impaired.

In the U.S., five states — Ohio, Illinois, Montana, Washington and Nevada — have “per se laws,” which set a specific amount of THC in the driver’s blood as evidence of impaired driving, according to the National Conference of State Legislatures. That limit ranges between 2 and 5 nanograms of THC per milliliter of blood.

Colorado, meanwhile, has a “permissible inference law,” which states that it’s permissible to assume the driver was under the influence if their blood THC level is 5 nanograms per milliliter or higher, according to NCSL.

Twelve states, most which have legalized some form of marijuana of use, have zero tolerance laws for any amount of certain drugs, including THC, in the body.

The remaining states have “driving under the influence of drugs” laws. Among those states, Alabama and Michigan, have oral fluid roadside testing program to screen drivers for marijuana and other drugs, according to NCSL.

In May this year, the U.S. Department of Transportation published a final rule that allows employers to use saliva testing for commercially licensed drivers, including truck drivers. The rule, which went into effect in June, sets the THC limit in saliva at 4 nanograms.

Saliva tests can detect THC for 8 to 24 hours after use, but the tests are not perfect and can results in false positives, leading some scientists to argue against using them in randomly-selected drivers.

In a 2021 report, the U.S. National Institute of Justice, the research and development arm of the Department of Justice, concluded that THC levels in bodily fluids, including blood and saliva “were not reliable indicators of marijuana intoxication.”

Studies on marijuana and driving

Over the past two decades, many studies have shown marijuana use can impair driving. However, discussions about what’s the best way to measure the level of THC in blood or saliva are ongoing. Below, we highlight and summarize several recent studies that address the issue. The studies are listed in order of publication date. We also include a list of related studies and resources to inform your audiences.

State Driving Under the Influence of Drugs Laws
Alexandra N. Origenes, Sarah A. White, Emma E. McGinty and Jon S. Vernick. Journal of Law, Medicine & Ethics, July 2024.

Summary: As of January 2023, 33 states and D.C. had a driving under the influence of drugs law for at least one drug other than cannabis. Of those, 29 states and D.C. had a law specifically for driving under the influence of cannabis, in addition to a law for driving under the influence of other drugs. Four states had a driving under the influence of drug laws, excluding cannabis. Meanwhile, 17 states had no law for driving under the influence of drugs, including cannabis.  “The 17 states lacking a DUID law that names specific drugs should consider enacting such a law. These states already have expressed their concern — through legislation — with drug-impaired driving. However, failure to name specific drugs is likely to make the laws more difficult to enforce. These laws may force courts and/or law enforcement to rely on potentially subjective indicators of impairment,” the authors write.

Associations between Adolescent Marijuana Use, Driving After Marijuana Use and Recreational Retail Sale in Colorado, USA
Lucas M. Neuroth, et al. Substance Use & Misuse, October 2023.

Summary: Researchers use data from four waves (2013, 2015, 2017 and 2019) of the Healthy Kids Colorado Survey, including 47,518 students 15 and older who indicated that they drove. They find 20.3% of students said that they had used marijuana in the past month and 10.5% said they had driven under the influence of marijuana. They find that the availability of recreational marijuana in stores was associated with an increased prevalence of using marijuana one to two times in the past month and driving under the influence of marijuana at least once. “Over the study period, one in ten high school age drivers engaged in [driving after marijuana use], which is concerning given the high risk of motor vehicle-related injury and death arising from impaired driving among adolescents,” the authors write.

Are Blood and Oral Fluid Δ9-tetrahydrocannabinol (THC) and Metabolite Concentrations Related to Impairment? A Meta-Regression Analysis
Danielle McCartney, et al. Neuroscience & Biobehavioral Reviews, March 2022.

Summary: Commonly used THC measurements may not be strong indicators of driving impairment. While there is a relationship between certain biomarkers like blood THC concentrations and impaired driving, this correlation is often weak. The study underscores the need for more nuanced and comprehensive research on this topic, especially as cannabis usage becomes more widespread and legally accepted.

The Effects of Cannabis and Alcohol on Driving Performance and Driver Behaviour: A Systematic Review and Meta-Analysis
Sarah M. Simmons, Jeff K. Caird, Frances Sterzer and Mark Asbridge. Addiction, January 2022.

Summary: This meta-analysis of experimental driving studies, including driving simulations, confirms that cannabis impairs driving performance, contrary to some beliefs that it might enhance driving abilities. Cannabis affects lateral control and speed — typically increasing lane excursions while reducing speed. The combination of alcohol and marijuana appears worse than either alone, challenging the idea that they cancel each other out.

Cannabis Legalization and Detection of Tetrahydrocannabinol in Injured Drivers
Jeffrey R. Brubacher, et al. The New England Journal of Medicine, January 2022.

Summary: Following the legalization of recreational marijuana in Canada, there was a notable increase in injured drivers testing positive for THC, especially among those 50 years of age or older. This rise in cannabis-related driving incidents occurred even with new traffic laws aiming to deter cannabis-impaired driving. This uptick began before legalization became official, possibly due to perceptions that cannabis use was soon-to-be legal or illegal but not enforced. The data suggests that while legalization has broad societal impacts, more comprehensive strategies are needed to deter driving under the influence of cannabis and raise public awareness about its risks.

Cannabis and Driving
Godfrey D. Pearlson, Michael C. Stevens and Deepak Cyril D’Souza. Frontiers in Psychiatry, September 2021.

Summary: Cannabis-impaired driving is a growing public health concern, and studies show that such drivers are more likely to be involved in car crashes, according to this review paper. Drivers are less affected by cannabis than they are by alcohol or cocaine, but the problem is expected to escalate with increasing cannabis legalization and use. Unlike alcohol, THC’s properties make it challenging to determine direct impairment levels from testing results. Current roadside tests lack precision in detecting genuine cannabis-impaired drivers, leading to potential wrongful convictions. Moreover, there is a pressing need for research on the combined effects of alcohol and cannabis on driving, as well as the impact of emerging popular forms of cannabis, like concentrates and edibles. The authors recommend public awareness campaigns about the dangers of driving under the influence of cannabis, similar to those against drunk driving, to address misconceptions. Policymakers should prioritize science-based decisions and encourage further research in this domain.

Demographic And Policy-Based Differences in Behaviors And Attitudes Towards Driving After Marijuana Use: An Analysis of the 2013–2017 Traffic Safety Culture Index
Marco H. Benedetti, et al. BMC Research Notes, June 2021.

Summary: The study, based on a U.S. survey, finds younger, low-income, low-education and male participants were more tolerant of driving after marijuana consumption. Notably, those in states that legalized medical marijuana reported driving after use more frequently, aligning with studies indicating a higher prevalence of THC detection in drivers from these states. Overall, while the majority perceive driving after marijuana use as dangerous, not all research agrees on its impairment effects. Existing studies highlight that marijuana impacts motor skills and executive functions, yet its direct correlation with crash risk remains debated, given the variations in individual tolerance and how long THC remains in the system.

Driving Under the Influence of Cannabis: A Framework for Future Policy
Robert M. Chow, et al.Anesthesia & Analgesia, June 2019.

Summary: The study presents a conceptual framework focusing on four main domains: legalization, driving under the influence of cannabis, driver impairment, and motor vehicle accidents. With the growing legalization of cannabis, there’s an anticipated rise in cannabis-impaired driving cases. The authors group marijuana users into infrequent users who show significant impairment with increased THC blood levels, chronic users with minimal impairment despite high THC levels, and those with consistent psychomotor deficits. Current challenges lie in the lack of standardized regulation for drivers influenced by cannabis, primarily because of state-to-state variability and the absence of a federal statutory limit for blood THC levels. European nations, however, have established thresholds for blood THC levels, ranging from 0.5 to 50.0 micrograms per liter depending on whether blood or blood serum are tested. The authors suggest the combined use of alcohol and THC blood tests with a psychomotor evaluation by a trained professional to determine impairment levels. The paper stresses the importance of creating a structured policy framework, given the rising acceptance and use of marijuana in society.

Additional research

Cannabis-Involved Traffic Injury Emergency Department Visits After Cannabis Legalization and Commercialization
Daniel T. Myran, et al. JAMA Network Open, September 2023.

Driving Performance and Cannabis Users’ Perception of Safety: A Randomized Clinical Trial
Thomas D. Marcotte, et al. JAMA Psychiatry, January 2022.

Medicinal Cannabis and Driving: The Intersection of Health and Road Safety Policy
Daniel Perkins, et al. International Journal of Drug Policy, November 2021.

Prevalence of Marijuana Use Among Trauma Patients Before and After Legalization of Medical Marijuana: The Arizona Experience
Michael Levine, et al. Substance Abuse, July 2021.

Self-Reported Driving After Marijuana Use in Association With Medical And Recreational Marijuana Policies
Marco H. Benedetti, et al. International Journal of Drug Policy, June 2021.

Cannabis and Driving Ability
Eric L. Sevigny. Current Opinion in Psychology, April 2021.

The Failings of per se Limits to Detect Cannabis-Induced Driving Impairment: Results from a Simulated Driving Study
Thomas R. Arkell, et al. Traffic Injury Prevention, February 2021.

Risky Driving Behaviors of Drivers Who Use Alcohol and Cannabis
Tara Kelley-Baker, et al. Transportation Research Record, January 2021.

Direct and Indirect Effects of Marijuana Use on the Risk of Fatal 2-Vehicle Crash Initiation
Stanford Chihuri and Guohua Li. Injury Epidemiology, September 2020

Cannabis-Impaired Driving: Evidence and the Role of Toxicology Testing
Edward C. Wood and Robert L. Dupont. Cannabis in Medicine, July 2020.

Association of Recreational Cannabis Laws in Colorado and Washington State With Changes in Traffic Fatalities, 2005-2017
Julian Santaella-Tenorio, et al. JAMA Internal Medicine, June 2020.

Marijuana Decriminalization, Medical Marijuana Laws, and Fatal Traffic Crashes in US Cities, 2010–2017
Amanda Cook, Gregory Leung and Rhet A. Smith. American Journal of Public Health, February 2020.

Cannabis Use in Older Drivers in Colorado: The LongROAD Study
Carolyn G. DiGuiseppi, et al. Accident Analysis & Prevention, November 2019.

Crash Fatality Rates After Recreational Marijuana Legalization in Washington and Colorado
Jayson D. Aydelotte, et al. American Journal of Public Health, August 2017.

Marijuana-Impaired Driving: A Report to Congress
National Highway Traffic Safety Administration, July 2017

Interaction of Marijuana And Alcohol on Fatal Motor Vehicle Crash Risk: A Case–Control Study
Stanford Chihuri, Guohua Li and Qixuan Chen. Injury Epidemiology, March 2017.

US Traffic Fatalities, 1985–2014, and Their Relationship to Medical Marijuana Laws
Julian Santaella-Tenorio, et al. American Journal of Public Health, February 2017.

Delays in DUI Blood Testing: Impact on Cannabis DUI Assessments
Ed Wood, Ashley Brooks-Russell and Phillip Drum. Traffic Injury Prevention, June 2015.

Establishing Legal Limits for Driving Under the Influence of Marijuana
Kristin Wong, Joanne E. Brady and Guohua Li. Injury Epidemiology, October 2014.

Cannabis Effects on Driving Skills
Rebecca L. Hartman and Marilyn A. Huestis. Clinical Chemistry, March 2014.

Acute Cannabis Consumption And Motor Vehicle Collision Risk: Systematic Review of Observational Studies and Meta-Analysis
Mark Asbridge, Jill A. Hayden and Jennifer L. Cartwright. The BMJ, February 2012.

Resources for your audiences

The following resources include explainers from federal agencies and national organizations. You’re free to use images and graphics from federal agencies.

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How migrants, asylum seekers and refugees seek health care in the US: A primer and research roundup https://journalistsresource.org/home/how-migrants-asylum-seekers-and-refugees-seek-health-care-in-the-us-a-primer-and-research-roundup/ Wed, 17 Jul 2024 13:43:22 +0000 https://journalistsresource.org/?p=78834 With immigration being a big election issue, it's crucial for journalists to highlight the numerous health challenges that migrants face and the health care options available to them.

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Migrants often face a variety of health challenges in their host countries, depending on the circumstances of their migration and a host of obstacles such as language barriers, lack of knowledge about the health care system, lack of health insurance and fear of deportation.

During this pivotal election year, when immigration is a hot political topic, it’s important for journalists to help news consumers better understand the specific health challenges that immigrants and refugees encounter in the U.S. and humanize their stories to counter stereotypes, misconceptions and misinformation.

For instance, some states claim that immigrants, especially those who lack legal documentation, are a financial burden on the health care system. However, research suggests the opposite, showing that immigrants, particularly those who lack legal documentation, may subsidize the U.S. health care financing system.

“Immigrants’ substantial contributions to health care funding (despite their relatively low incomes) may be associated with their high labor force participation rate, particularly among men who have recently arrived in the US. Hence, they and their employers (whose benefit payments are widely considered part of the employee’s earned compensation) contribute to health insurance premiums as well as payroll and other taxes,” write the authors of a 2022 study published in JAMA Network Open, noting that “immigrants contributed $58.3 billion more in premiums and taxes in 2017 than insurers and government paid for their health care, and US-born citizens incurred a net deficit of $67.2 billion.”

Immigration is not an issue unique to the United States.

Today, more people than ever live in a country other than the one in which they were born, according to the United Nations. As of July 2020, there were an estimated 281 million international migrants, making up 3.5% of the global population. That’s compared with 2.8% in 2000 and 2.3% in 1980, according to the UN.

In 2022, there were 21.2 million noncitizen immigrants in the U.S., accounting for roughly 7% of the country’s population, according to a June 2024 policy brief by the Kaiser Family Foundation, now called KFF. About 40% are people who lack the legal documents needed to stay in the country.

Immigrant health is strongly shaped by the social, economic and political conditions of their host country, write Michael D. Stein and Sandro Galea in the 2020 book “Pained: Uncomfortable Conversations about the Public’s Health.”

“Legal status in the host country, for example, is associated with access to a broad range of health services and resultant better health,” they write. “Perhaps unsurprisingly, aggressive anti-immigration policies create poor health for the population they target. For example, family separation and detention at our borders traumatize families, deepening the mental health needs of this vulnerable group.”

In addition, as we explain below, research shows many immigrants and refugees experience traumatic events before, during and after their migration, which can lead to mental health problems such as post-traumatic stress disorder, depression and anxiety.

Children and pregnant women often face challenges in accessing pediatric and prenatal care. There is also research on the health risks associated with the types of jobs that immigrants and refugees hold.

But first, a primer on terminology and level of access to health care based on immigration status:

Immigrants, migrants, refugees and asylum seekers

The terms “refugee,” “asylum seeker” and “immigrant” are often used in discussions about people moving from one country to another, but they have distinct meanings based on the reasons for their move and individuals’ legal status.

Immigrant

An immigrant is a person who makes the decision to leave their home country and moves to another country with the intention of settling there, according to the International Rescue Committee, a humanitarian aid nongovernmental organization.

Immigrants move for various reasons, including economic opportunities, family reunification or a desire for a change in lifestyle. Unlike refugees or asylum seekers, immigrants do not typically flee persecution or immediate life-threatening situations. Their move can be either permanent or temporary, and they may go through legal channels to obtain residency rights, work permits or citizenship in the host country.

The AP Stylebook says immigrant, “rather than migrants, is most commonly used for people established in the U.S., which usually is their final destination. It also is used when another specific country is the final destination.”

Migrant

There’s no internationally accepted legal definition for the term ‘migrant.’ But the term generally refers to people who are staying outside of their home country and are not asylum seekers or refugees, according to Amnesty International, a global non-governmental organization focused on human rights.

“While dictionary definitions sometimes distinguish ‘immigrants’ — people who are, or intend to be, settled in their new country — from ‘migrants’ who are temporarily resident, ‘immigrant’ and ‘migrant’ (as well as ‘foreigner’) are often used interchangeably in public debate and even among research specialists,” according to The Migration Observatory at the University of Oxford.

The UN defines an international migrant as any person who has changed their country of residence, regardless of legal status or the nature and motive of their move.

The AP Stylebook says the term also “may be used for those whose reason for leaving their home country is not clear, or to cover people who may also be refugees or asylum-seekers.”

Refugee

A refugee is forced to leave their country to escape war, persecution or natural disaster. Refugees have a well-founded fear of persecution for reasons of race, religion, nationality, political opinion or membership in a particular social group. Many have been forced to flee with little more than the clothes on their back, according to the UN Refugee Agency UNHCR, formerly the United Nations High Commissioner for Refugees. Today, there are 43.4 million refugees around the world.

People go through a process known as refugee status determination in their host country to establish whether their circumstances make them refugees, according to the UN Refugee Agency.

Refugees have a right to international protection, according to Amnesty International. Those rights and protections include the right not to be expelled from their host country, the right to non-discrimination, the right to housing, education and work, according to the UN Refugee Agency.

To become a refugee in the United States, a person has to apply for protection while outside the U.S., while to become an asylum seeker, the application for protection must be submitted from inside the U.S. or at the border, according to the Migration Policy Institute, a nonpartisan policy and research organization. 

Asylum Seeker

An asylum seeker is someone who is seeking international protection from persecution and serious human rights violations in their home country, according to the UN Refugee Agency and Amnesty International. Their request for refugee status, or complementary protection status, has yet to be processed, or they may not yet have requested asylum but they intend to.

“Seeking asylum is a human right. This means everyone should be allowed to enter another country to seek asylum,” according to Amnesty International.

The length and outcome of this process can vary greatly depending on the laws of the host country and the specifics of the individual’s case. Not all asylum seekers will be found to be refugees, but all refugees were once asylum seekers, according to the UN Refugee Agency.

According to the AP Stylebook, “Asylum, under U.S. and international law, is permission granted to refugees to remain within the country to which they have fled. It is not intended for people leaving for economic reasons.” In addition, “In the United States, people fleeing their home countries who do not qualify for asylum may be eligible for ‘withholding of removal’ or the U.N. Convention Against Torture, which offer similar protections.”

“People who are likely to be asylum-seekers or refugees should not be referred to as migrants,” according to the UN Refugee Agency. “To do so can undermine the legal protections afforded to refugees under international law.”

Asylee

Journalists may come across the term “asylee,” referring to a person who has been granted asylum, but the AP Stylebook recommends against using the word. “We would say she was granted asylum,” according to the Stylebook.

Illegal immigration

The term refers to “entering or living in a country without authorization in violation of civil or criminal law,” according to AP Stylebook. Except in direct quotations, use “illegal” only to refer to an action, not a person, the Stylebook advises: “’illegal immigration’ but not ‘illegal immigrant’.”

Also, “do not use the terms alien, unauthorized immigrant, irregular migrant, an illegal, illegals or undocumented (except when quoting people or government documents that use these terms),” according to the AP Stylebook.

Access to U.S. health care based on immigration status

Health and health care access issues are not the same for all noncitizen immigrants. In the U.S., health care coverage of immigrants is based on their immigration status, as defined by the federal government. This HealthCare.gov page defines the terminology and coverage options.

Immigrants who are lawfully in the U.S. have a five-year waiting period to enroll in Medicaid, a government program primarily serving people with low incomes, or the Children’s Health Insurance Program (CHIP). CHIP is a state-federal insurance program that provides low-cost health coverage to children in families that earn too much money to qualify for Medicaid but not enough to buy private insurance. In some states, CHIP covers pregnant women, according to HealthCare.gov.

Migrants who lack legal documentation to stay in the country can’t enroll in any federally-funded coverage, including Medicaid, CHIP, Medicare and the Affordable Care Act marketplace, according to KFF.

Refugees and those granted asylum seeker status don’t have to wait five years before enrolling in Medicaid and CHIP, according to HealthCare.gov. Others, including asylum seekers who haven’t been granted asylum status don’t qualify for Medicaid or CHIP, according to KFF.

But some states have tried to close the health coverage gap, especially for children and pregnant people.

So far, 22 states have extended insurance coverage to pregnant people regardless of immigration status through CHIP, according to KFF. Ten states — California, Connecticut, Illinois, Maine, Massachusetts, New Jersey, New York, Oregon, Rhode Island, and Washington — offer extended postpartum coverage for a year regardless of immigration status.

Meanwhile, 35 states, plus D.C., provide Medicaid coverage to children and pregnant people who are in the U.S. legally, without the five-year waiting period, according to HealthCare.gov

As of June 2024, 12 states — California, Connecticut, Illinois, Maine, Massachusetts, New Jersey, New York, Oregon, Rhode Island, Utah, Vermont, Washington — and D.C. cover children through CHIP regardless of immigration status, according to KFF.

The National Immigration Law Center also has maps of states that provide health coverage to immigrant children and pregnant people and a state-by-state list of medical assistance programs available to immigrants.

Six states — California, Colorado, Illinois, New York, Oregon, Washington — plus D.C. have expanded coverage to adults regardless of immigration status, as long as they fall within Medicaid’s income criteria.

In May 2024, the Biden Administration published a new regulation that will include individuals with Deferred Action for Childhood Arrivals (DACA) status as lawfully present in the U.S., so that they will be eligible to gain insurance coverage through the ACA Marketplace, starting this November.

“From a social justice standpoint, we really see legal status as a social determinant of health,” said Dr. Alan Shapiro, during a panel on covering immigrants at the Association of Health Care Journalists’ annual conference in New York City in June. Shapiro is the co-founder and chief strategy officer of Terra Firma National, which provides a range of services to immigrant families.

In a 2023 KFF report based on a joint survey with the LA Times, including 3,358 immigrants 18 years and older, nearly 80% said that they were in good to excellent health, while 20% reported being in fair or poor health. Nearly one in five of those with household incomes below $40,000 per year reported a health condition that required ongoing treatment, compared with about one in ten of those with higher incomes.

“Although most immigrants are healthy and employed, many face challenges to accessing and using health care in the U.S. due to higher uninsured rates, affordability challenges, linguistic and cultural barriers, and immigration-related fears, which has negative implications for their health and financial security,” according to the survey.

Advice for journalists

At the recent AHCJ panel on covering immigration, experts advised journalists to remind their audiences that many people leave their home countries out of necessity for survival.

“Cover migration differently than it’s been covered,” said Shapiro, who is also an assistant professor of pediatrics at Albert Einstein College of Medicine. “I don’t think there’s enough talk about the country conditions and what children and families are really struggling with in their home countries, and I think if the public knew more about how terrible life is for children and families there, and how little protection there is, there would be a lot more empathy and sympathy for [them].”

Dr. Laura Vargas, an assistant professor of psychiatry at the University of Colorado’s Institute of Behavioral Science, who has spent much time speaking to migrants at the U.S.-Mexico border advised journalists to explain the flow of firearms from the U.S. to Latin American countries, a trend that has fueled violence in the region. She has published several studies on the health and mental health of immigrants from Latin America.

“Firearms facilitate the criminal gangs, who are sometimes outgunning the police force and other local law enforcement,” said Vargas. “There’s rampant criminal activity in terms of extortion, robberies, territorial disputes among criminal gangs.”

Those conditions create instability for families and affect the health and mental health of adults and children.

“There’s a lack of future for children and families,” she said. “There’s no employment, and if you graduate with a degree, there’s no job available for you.”

It’s also critical that journalists build trust with the communities they’re covering. At Documented, a nonprofit news site devoted to covering New York City’s immigrants and policies that affect their lives, the staff created a WhatsApp channel to connect with migrants and asylum seekers after learning that the app was the main source of information and communication for them, said Rommel Ojeda, a bilingual journalist, filmmaker and a community correspondent for Documented.

The channel, which has more than 6,000 members, prioritizes privacy by masking phone numbers and offers anonymity to people who agree to be interviewed.

“All of that is to say that we were able to build trust and the trust gave us access so that we can report better,” said Ojeda. “And when I say we can report better, it’s because we can go into the community and really ask for the nuances of each individual who’s talking to us.”

Research roundup

Insurance and Health Care Outcomes in Regions Where Undocumented Children Are Medicaid-Eligible
Julia Rosenberg, Veronika Shabanova, Sarah McCollum and Mona Sharifi. Pediatrics, September 2022.

The study: The study investigates the impact of expanded Medicaid eligibility on children in immigrant families and children who are not in immigrant families. The researchers uses data from the 2019 National Survey of Children’s Health, a nationally representative cross-sectional survey, to compare health care outcomes in states that provide Medicaid eligibility to children regardless of their documentation status (“extended-eligibility states”) with the states that don’t (“nonextended-eligibility states”). There were six extended-eligibility states plus Washington, D.C., at the time of the study. The primary aim was to assess how residing in these different regions affects the rates of uninsured people and health care use among children.

The findings:

  • Children in extended-eligibility states had a significantly lower rate of being uninsured (3.7%) compared with those in states that didn’t offer extended eligibility (7.5%).
  • Children in immigrant families were more likely to be uninsured compared to those who were not from immigrant families, even if they lived in an extended-eligibility state.
  • Children in extended-eligibility states were less likely to forgo medical care (2.2% compared with 3.1%) and dental care (17.1% compared with 20.5%) compared with those in states that didn’t offer extended eligibility.
  • There were similar rates of emergency department visits between children in extended- and nonextended-eligibility states.

The takeaway: The study highlights that expanding public health insurance eligibility to all children, regardless of documentation status, is associated with lower rates of being uninsured. “This builds upon the evidence that policies which expand insurance access can improve enrollment within and beyond the target expansion demographic through a ‘welcome mat’ effect,” the authors write. The findings also suggest that states with restrictive health insurance policies for migrant children who lack legal documents to stay in the country may face higher rates of being uninsured and poorer health care use, impacting long-term health and social equity, they add.

Companion commentary: Children in Immigrant Families Deserve Health Care, by Fernando S. Mendoza et al., published in the journal Pediatrics in August 2022.

California’s Health4All Kids Expansion And Health Insurance Coverage Among Low-Income Noncitizen Children
Brandy J. Lipton, Jefferson Nguyen and Melody K. Schiaffino. Health Affairs, July 2021.

The study: Implemented in May 2016, California’s Health4AllKids expanded Medicaid eligibility to all low-income children regardless of their immigration status. The research uses data from the 2012 to 2018 American Community Survey to evaluate the impact of this expansion on health insurance coverage rates among noncitizen children in California compared with eleven states (Delaware, Hawaii, Illinois, Massachusetts, Minnesota, New Jersey, New Mexico, New York, Ohio, Rhode Island, and Washington) plus Washington, D.C.

The findings:

  • The rate of noncitizen children lacking health insurance coverage dropped by 34%, translating to a 9 percentage-point increase in any coverage and a 12 percentage-point increase in Medicaid coverage.
  • Before the expansion, noncitizen children were significantly less likely to have health insurance compared with citizen children. The Health4All Kids program effectively reduced this disparity by more than half, showcasing the impact of inclusive health policies.
  • The study found no significant evidence of a substantial shift from private to public insurance coverage, indicating that the expansion primarily reduced the uninsured rates rather than substituting one form of coverage for another.

The takeaway: “Our analysis provides some of the first evidence on the effects of expanding Medicaid and CHIP to undocumented children. Findings suggest that these policies have the potential to reduce coverage disparities by immigration status,” the authors write.

Publicly-Funded Services Providing Sexual, Reproductive, and Maternal Healthcare to Immigrant Women in the United States: A Systematic Review
Tanvi Jain, Jessica LaHote, Goleen Samari and Samantha Garbers. Journal of Immigrant and Minority Health, June 2022.

The study: The authors review published research about the availability and impact of publicly funded sexual, reproductive and maternal health services on immigrant women in the U.S. The review examines nine studies published from December 2007 to August 2020, focusing on the use of services such as Medicaid, CHIP, and other federally or state-funded programs, particularly among Latina immigrants.

The findings:

  • Immigrant women, especially those who lack legal documentation to stay in the country or with low income and education, had higher rates of adequate prenatal care when they had access to Medicaid or CHIP. Six of the nine studies reviewed indicated improved prenatal care adequacy due to access to these programs.
  • Immigrant women faced significant barriers to accessing sexual, reproductive, and maternal health services, including cost, language barriers, fear of deportation and lack of knowledge about available services. These barriers often led to delayed or inadequate prenatal care, which can result in severe health outcomes.
  • Policies like the “public charge” rule negatively impacted immigrant women’s access to sexual, reproductive, and maternal health services, with many avoiding enrollment in Medicaid due to fear of jeopardizing their immigration status. This led to later initiation of prenatal care and fewer prenatal visits. Public charge is a federal law that determines if a non-citizen applying for a visa or permanent residence is likely to rely on the government for support in the future.

The takeaway: The study underscores the importance of inclusive and comprehensive publicly-funded sexual, reproductive, and maternal health services for immigrant women in the United States. Access to Medicaid and CHIP significantly improves prenatal care adequacy, but numerous barriers still prevent many immigrant women from using those services. Anti-immigrant policies exacerbate challenges, leading to poorer health outcomes. “Similar to women born in the US, immigrant women with low income and educational attainment would most benefit from publicly-funded programming,” the authors write.

More on research funding: Funding for Refugee Health Research From the National Institutes of Health Between 2000 and 2020 by Mehak Kaur, Lana Bridi and Dahlia Kaki, published in JAMA Network Open in January 2024.

The Health of Undocumented Latinx Immigrants: What We Know and Future Directions
India J. Ornelas, Thespina J. Yamanis and Raymond A. Ruiz. Annual Review of Public Health, April 2020.

The study: The authors aim to explore the health outcomes and determinants for Latino migrants who lack legal documentation to stay in the country. The study highlights the social, political and economic factors that impact their health and identifies gaps in current research.

The findings:

  • Social and political factors significantly influence the health of migrants who lack legal documentation to be in the country. Factors vary across different stages of migration and are influenced by the immigrants’ country of origin, how they entered the U.S., and changes in their legal and health status over time.
  • The study notes that conducting research with migrants who lack legal documentation is challenging due to their precarious living conditions, unstable employment, frequent changes in contact information, and low literacy levels. However, strategies like conducting research at community-based organizations and using social media for communication can help overcome those challenges.

The takeaway: “Public health practitioners can continue to support and advocate for programs and policies that create healthful social and political environments for undocumented Latinx immigrants,” the authors write. They also call for additional research.

Delve deeper: Traumatic Experiences and Place of Occurrence: An Analysis of Sex Differences Among a Sample of Recently Arrived Immigrant Adults from Latin America, by Laura X. Vargas, et al., published in PLOS One in June 2024.

US Immigration Policy Stressors and Latinx Youth Mental Health
Kathleen M. Roche, Rebecca M. B. White and Roushanac Partovi. JAMA Pediatrics, May 2024.

The study: The authors investigate how immigration-related stressors affect parent-child relationships and the subsequent mental health of Latino adolescents. The study includes adolescent-mother duos surveyed at three different time points over four years — 2018, 2020, and 2022, conducted in a suburban Atlanta, Georgia, school district, involving Latino adolescents aged 11 to 16 years.

The findings:

  • Immigration-related stressors, such as mothers’ anti-immigrant worries and adolescents’ experiences of family member detention or deportation, were linked to disruptions in parent-child relationships.
  • Specifically, anti-immigrant worry was associated with increased parent-child conflict, leading to higher odds of symptoms such as aggression and impulsivity in adolescents.
  • For girls, family member detention or deportation led to reduced parental support, which in turn was linked to increased depression and anxiety.

The takeaway: “Our research signals the need for school personnel to address stressors faced by Latinx students and families and for health care institutions to advocate for policies expanding access to affordable, culturally competent mental health services, including for children of immigrants. Congress and both state and local lawmakers have the power to enact policies that reduce risks faced by children in immigrant families. Inclusive immigration policies prioritizing the best interests of children and their families may help protect the mental health of this country’s Latinx youth, the vast majority of whom are US citizens,” the authors write.

Additional reading

Additional resources

Migration Policy Institute

  • This primer on U.S. public benefits (including health care) is a useful resource in sifting through immigrant eligibility by program as well as immigrant legal status.
  • The State Immigration Data Profiles have a wealth of data on the immigrant population in the U.S. and state levels, including health insurance coverage for immigrants and U.S.-born overall and by U.S. citizenship status.
  • This data tool that looks just at the unauthorized segment of the immigrant population at U.S., state, and top county levels.

Protecting Immigrant Families

Human Rights Watch: Refugees and Migrants

American Immigration Council

ACLU: Immigrants’ Rights

Conscious Style Guide: Ethnicity, Race + Nationality

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Research highlights need for public health approach in news reporting of gun violence https://journalistsresource.org/home/study-highlights-need-for-public-health-approach-in-news-reporting-of-gun-violence/ Tue, 25 Jun 2024 13:00:52 +0000 https://journalistsresource.org/?p=78645 The study, published in BMC Public Health, reveals an overwhelming reliance on law enforcement narratives, missing deeper insights into the root causes and potential solutions to gun violence.

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For decades, researchers have urged journalists to avoid framing gun violence solely as a crime issue and provide a broader public health context. Yet, as evidenced by the findings of a recent study of local TV news in Philadelphia, the focus on the crime angle remains very much at the forefront of gun violence coverage.

The researchers’ call for change was further underscored on June 25, when the U.S. surgeon general declared firearm violence a public health crisis for the first time in a 40-page advisory, calling on the nation to take a public health approach to address gun violence, much like it has done before to address tobacco and car crashes.

In “Public health framing of firearm violence on local television news in Philadelphia, PA, USA: a quantitative content analysis,” published in BMC Public Health in May 2024, researchers analyzed 192 TV news clips aired on four local news stations between January and June 2021 and found that 84% contained at least one element that could be harmful to communities, audiences and gun violence survivors. Some of those elements are visuals of the crime scene, not following up on the story, naming the treating hospital and the relationship between the injured person and the shooter.

Meanwhile, public health elements such as root causes of gun violence, solutions and sources other than law enforcement officials were missing from most news clips.

“The main message is that the majority of reporting on firearm violence, at least in TV news, has many harmful content elements and we have to do better,” says the study’s lead author, Dr. Jessica Beard, director of research at The Philadelphia Center for Gun Violence Reporting, a trauma surgeon at Temple University Hospital and an associate professor at the Lewis Katz School of Medicine at Temple University. “The public does not have an accurate understanding of what gun violence is and the policy implications are huge.”

Beard was part of a panel on covering gun violence as a public health emergency at the Association of Health Care Journalists’ annual conference in New York City earlier this month. She also spoke with The Journalist’s Resource after the panel.

Previous studies have shown that when the news media covers community gun violence as a single incident in isolation, audiences are more likely to blame victims. This approach also reinforces racist stereotypes and suggests that policing is the most effective way to prevent violence, undermining public health measures that could curb gun violence, Beard and her co-authors of the BMC Public Health study write.

This type of coverage also has a negative effect on people who are injured in shootings, they point out.

Injured people say that graphic content, inaccuracies and mention of treating hospitals resulted in distress, harm to their reputation and threats to their personal safety, according to a 2023 study by the same research team, which included interviews with 26 adults who had recently sustained a gunshot wound. They said that news reports that neglected their personal perspectives left them feeling dehumanized and compounded their trauma.

“Some people were afraid to get discharged from the hospital,” Beard says.

More about the study and its findings

The researchers chose to study TV news because more people in the U.S. get their news from TV than other legacy sources such as radio and print, according to a 2023 survey by Pew Research Center. (That same survey found that more Americans get their news from digital devices than from TV, and there’s a need for research on firearm violence content in digital news, the authors note.)

They focus on Philadelphia for several reasons. The city is the birthplace of Eyewitness News, which launched in 1965, and Action News, which launched in 1970. The two newscasts pioneered reporting approaches that have been criticized for the way they are produced and for casting a negative light on Black communities, the authors write. A 2022 story by The Philadelphia Inquirer delves deep into this history.

Moreover, the epidemic of gun violence in Philadelphia reflects a trend across the country where shooting rates have increased since the onset of the COVID-19 pandemic, disproportionately affecting young people and Black people. A June report from the CDC’s Morbidity and Mortality Weekly Report finds that between January 2019 and September 2023, rates of emergency medical services encounters for gun-related injuries were highest among males, non-Hispanic Black people and people between 15 and 24 years old.

The study compares Philadelphia news clips based on two main characteristics: news clips that focused on a single incident in isolation, called episodic framing, and those with more of a public-health approach, exploring the broader social and structural context in which the violence occurs, called thematic framing.

Among the findings:

  • Nearly 80% of the stories used episodic framing.
  • In 21% of the clips, a law enforcement official was the main interview source.
  • In 50.5% of the clips where the journalists were the only news narrators, police were the predominant source of information on firearm violence.
  • More than 84% of the stories contained at least one harmful element, such as a visual of the crime scene, not following up on the story, the number of gunshot wounds, the name of the treating hospital and the relationship between the injured person and the shooter. About 7% of the clips included video or audio of the shooting.
  • The 192 news clips mentioned a total of 433 injured people.
  • More than 80% of the clips mentioned an injured person, although in 67%, the only information about injured people was age or gender.
  • None of the 192 news segments included a health or public health professional or an injured person as the main interview source.
  • Only 10% of the clips included discussions about public health solutions.
  • And only five stories (2.6%) used the word “prevent.” Another four stories (2.1%) offered resources related to firearm prevention.

The authors point out that the study findings may not be generalizable to all U.S. cities, to national TV news, or to print, radio, or social media content.

Also, it’s still not clear whether harmful reporting on community firearm violence increases rates of gun violence. The connection between the two is complex, Beard says, adding that she’s hoping to explore and study the topic in the future.

In their 2023 study, Beard and colleagues asked injured participants if they would be willing to speak with a journalist about their shooting incident and what would they tell the journalist.

One participant said, “You report the gun violence, but why not do a follow-up report […] for the victims, the survivors, the families that had to bury these people, the whole process? Just don’t do a guy got shot over there, a guy got shot over here. You’re making people more fearful. You’re more fearful, you’re going to arm yourself more.”

The authors underscore the study participant’s point: Reporting on firearm violence with limited information and no follow-up stories may perpetuate fear, which may contribute to increasing firearm use and, in turn, the increasing incidence of firearm violence.

The BMC Public Health study was funded by the Stoneleigh Foundation, Lehigh University Research Investment Programs, the National Institute on Minority Health and Health Disparities of the National Institutes of Health, and the National Center for Injury Prevention and Control of the Centers for Disease Control and Prevention.

A Philadelphia Inquirer video explains how Eyewitness News and Action News brands of TV news, born in Philadelphia, harmed Black America.

Gun violence as a public health issue

Two days after the Pulse nightclub mass shooting, where 49 people were killed by a lone gunman in Orlando, The American Medical Association adopted a policy calling gun violence “a public health crisis,” which requires a comprehensive public health response.

In addition to death, gun violence can result in long-term physical, mental and financial burdens among injured individuals, studies show, including a 2023 study published in JAMA Network Open. It impacts communities, causing fear and economic decline. And compared with infectious diseases, it poses a larger burden on society in terms of potential years of life lost, according to a 2020 report by the Educational Fund to Stop Gun Violence (now the Johns Hopkins Center for Gun Violence Solutions).

Gun violence affects the health of entire communities, said Dr. Ruth Abaya, an attending physician in the Children’s Hospital of Philadelphia emergency department, during the panel on covering gun violence as a public health emergency at the Association of Health Care Journalists.

“We’re seeing young people who have crippling anxiety that is limiting their abilities to participate in daily life, they’re being medicated and even being hospitalized, and that’s directly related to this other public health crisis of gun violence,” said Abaya, who’s also the senior director of health systems and CVI — community violence intervention — integration at The Health Alliance for Violence Intervention. “And I’m also seeing young people with other unrelated chronic diseases like asthma that’s out of control because their caregiver was killed in a violent incident.”

Recommendations for journalists

The study’s findings are not surprising to Rick Brunson, a senior instructor of journalism at the University of Central Florida’s Nicholson School of Communication and Media.

Brunson, who worked as a reporter and editor in Central Florida for 20 years, including at a local TV station, mentions several reasons why many TV stations’ coverage of gun violence lacks a broader public health context.

Commercial news stations’ economic lifeblood depends on ratings, and as much as audiences may say they are put off by coverage of crime and violence, stations’ internal research shows that people watch crime news, he says.

Also, with the plethora of streaming options and multiple screens, viewers are distracted and TV stations are often vying for their attention, which results in newscasts packed with videos and short stories without space for context and explanation.

And there’s the broader, growing trend of news avoidance among audiences.

“When they watch the news, it just makes them feel despair and exhaustion, especially the focus on crime coverage and because there’s no context,” Brunson says. “They’re just presented with problem after problem after problem. Violence after violence.”

“The question for news directors to ask in the face of this where people are just avoiding the news and you’re seeing your audience erode more and more, year after year, is can the news business also be in the hope business?” Brunson says. “It’s going to take some serious consideration and the reversal of the kind of coverage that you put on your air.”

Even though there are widely accepted journalistic guidelines to protect victims and audiences in cases of suicide, mass shootings, sexual assault, abuse, and crime involving minors, no such guidelines crafted by journalists and public health practitioners exist for reporting on community firearm violence, Beard and her colleagues note in their study.

They say their research aims to lay the foundation for understanding harmful content in TV news clips and share several recommendations, including the practice of trauma-informed reporting.

Trauma-informed journalism recognizes the need for journalists to better understand how trauma can affect survivors and how to avoid reporting that could cause additional harm to vulnerable people and those who have experienced trauma. The practice also helps journalists to protect their own mental health.

When covering firearm violence, trauma-informed reporting would involve engaging with survivors using trauma-informed principles, including giving them control over the narrative of their injuries. It also minimizes harmful elements such as graphic visuals.

“This type of reporting could humanize firearm-injured people and build empathy in audiences, deconstructing the existing racialized news narratives around firearm violence in cities,” the authors write.

They also recommend:

  • Public health practitioners partner with firearm violence survivors to offer alternative perspectives to journalists reporting on firearm violence.
  • Journalists seek training in trauma-informed practices and solutions journalism.
  • Newsrooms adopt a public health approach to reporting on firearm violence, provide resources to audiences and use the public health framing.

To help journalists and newsrooms meet these recommendations, the Philadelphia Center for Gun Violence Reporting and Frameworks Institute created a free gun violence reporting toolkit, which provides more information on trauma-informed reporting, the drivers of gun violence, and tips for more complete news coverage of gun violence.

Brunson advises reporters to seek out public health professionals as a source to help add context to their reporting and to read BMC Public Health study.

“People are always trying to tell us what to do,” Brunson says. “But we should take that as a compliment because the folks like the people who did this study acknowledge that they’re doing it because the media has influence, and journalists help shape and frame public debate and discussions and the problems that get looked at. Policymakers look at what journalists are doing.”

Additional research

Systematic disparities in reporting on community firearm violence on local television news in Philadelphia, PA, USA
Jessica H. Beard, et al. Preventive Medicine Reports, April 2024.

“Like I’m a nobody:” firearm-injured peoples’ perspectives on news media reporting about firearm violence
Jessica H. Beard, et al. Qualitative Research in Health, June 2023.

Firearm Injury — A Preventable Public Health Issue
Jay Patel, et al. Lancet Public Health, November 2022.

Making the News: Victim Characteristics Associated with Media Reporting on Firearm Injury
Elinore J Kaufman, et al. Preventive Medicine Reports, December 2020.

Resources

  • To help journalists with better reporting of gun violence, PCGVR has created a free gun violence reporting toolkit.
  • Firearm Violence: A Public Health Crisis in America” is the U.S. Surgeon General’s 2024 advisory, a first of its kind for gun violence.
  • The American Public Health Association’s Gun Violence page links to several useful resources.
  • The Dart Center for Journalism & Trauma, the Canadian Broadcasting Corporation (CBC/Radio-Canada), and the Canadian Journalism Forum on Violence and Trauma recently launched a news industry toolkit on trauma-aware journalism.
  • This fact sheet by the American Public Health Association lists some of the recommended public health responses to gun violence.

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Abortion pill mifepristone: An explainer and research roundup about its history, safety and future https://journalistsresource.org/health/mifepristone-research-roundup/ Thu, 13 Jun 2024 16:47:53 +0000 https://journalistsresource.org/?p=76574 With abortion-related measures on the ballot in several states, journalistic coverage of the topic has never been more crucial. This piece aims to help inform the narrative on medication abortion with scientific evidence.

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This piece was updated on June 13, 2024 to reflect the recent Supreme Court decision about access to mifepristone, and to highlight new research on medication abortion. It was originally published in November 2023, shortly after the interviews with Ruvani Jayaweera and Carrie Baker took place.

On June 13, the Supreme Court justices in a unanimous decision preserved access to mifepristone, a medication that’s used for the safe termination of early pregnancy, writing that “federal courts are the wrong forum for addressing the plaintiffs’ concerns about FDA’s actions.”

The legal future of mifepristone had hung in the balance for several months.

In August 2023, the 5th U.S. Circuit Court of Appeals ruled that mifepristone should not be prescribed past the seventh week of pregnancy, prescribed via telemedicine, or shipped to patients through the mail. In September, the Justice Department asked the Supreme Court to consider a challenge to that ruling.

On Dec. 13, 2023, the Supreme Court justices announced that they would take up the case on the availability of mifepristone. The American College of Obstetricians and Gynecologists issued a statement on the same day urging the court to rule in favor of keeping the pill on the market and available to patients. The justices heard oral arguments on March 26, 2024 before issuing the June 13 ruling.

Meanwhile, abortion is on the ballot in four states this year so far. Measures have also been proposed in several other states, with initiatives that aim to ban, restrict, or expand abortion rights. (State laws that ban abortion apply to both abortion medications and surgical procedures.)

It’s important for journalists covering abortion to have a good understanding of medication abortion so that they can better inform their audiences. Below, we explain what medication abortion is, how individuals access it, and what research shows about its safety and effectiveness.

Medication abortion

Medication abortion is also known as abortion with pills or medical abortion. The Food and Drug Administration has approved medication abortion for up to 10 weeks of pregnancy and the World Health Organization authorizes its use for up to 12 weeks. It is endorsed by several organizations, including the American College of Obstetricians & Gynecologists and the American Medical Association. Medication abortion can also be used beyond 12 weeks of pregnancy, according to several organizations including the World Health Organization and the International Federation of Gynecology and Obstetrics.

Medication abortions accounted for 51% of all abortions in the U.S. in 2020, according to a 2022 CDC report. Use of medication abortion has been on the rise in recent years, increasing by 154% from 2011 to 2020, and by 22% from 2019 to 2020.

In many parts of the world, including the U.S., a two-medication protocol is used for medication abortion: mifepristone followed by misoprostol. Mifepristone blocks the hormone that is required for the continuation of pregnancy, and misoprostol causes the uterus to cramp and expel the pregnancy tissue.

The current approved regimen for medication abortion is 200 mg of mifepristone, followed by 800 mcg of misoprostol within 24 to 48 hours. Individuals are advised to follow up with a health care provider seven to 14 days after taking mifepristone, according to the FDA.

Studies have shown that both drugs are safe and effective. In consultation with medical experts, The New York Times has curated and reviewed a collection of 101 studies on medication abortion, all of which conclude that the pills are safe.

History of mifepristone

Mifepristone, or RU-486, is a drug that blocks progesterone, a hormone that’s needed for a pregnancy to continue.

Developed by the now-defunct French pharmaceutical firm Roussel-Uclaf, the pill was first approved in France and China in 1988. As of May this year, 96 countries have approved it for medication abortion, according to the Guttmacher Institute, a sexual and reproductive health research and policy organization that supports abortion rights.

The FDA approved mifepristone for medical termination of pregnancy in September 2000. Some 5.9 million women in the U.S. used mifepristone between September 2000 and December 2022, 32 of whom died, according to the FDA, which notes in its report that “the fatal cases are included regardless of causal attribution to mifepristone.” Causes of death included infection, homicide, ruptured ectopic pregnancy, drug overdose, and suicide.

Danco Laboratories manufactures Mifeprex, the brand name for mifepristone. In 2019, the FDA approved a generic version of the drug, which is manufactured by GenBioPro. The drug is also manufactured by other companies around the globe.

When the FDA first approved the pill in 2000, the recommended dosage of mifepristone was higher, 600 mg, compared with the current 200 mg. Studies over time showed the lower dose is effective.

Initially, the FDA also required three doctor office visits, on days one, three, and 14 after taking the pill. Prescribers had to be licensed physicians and the drug had to be dispensed in person at a medical facility. The pill was approved to be prescribed within 49 days of gestation, or seven weeks.

By 2016, after evaluating safety data, the FDA modified prescribing requirements, extending the prescription period to up to 70 days of pregnancy, or 10 weeks. It reduced the number of required office visits to one, between seven and 14 days of taking the pill, and the prescriber no longer had to be a physician. Still, mifepristone was not available at brick-and-mortar pharmacies for patients who had a prescription, nor was it available via telemedicine.

But the onset of the COVID-19 pandemic in 2020, which closed many practices and limited in-office doctor visits, changed that.

Mifepristone prescription after COVID-19 and overturn of Roe v. Wade

In December 2021, the FDA reviewed mifepristone’s long-standing safety data and decided to remove the in-person dispensing requirements, expanding access to telehealth visits in states where abortion isn’t banned. The pill can also be mailed to patients since providers no longer have to dispense the pills in person.

It also allowed brick-and-mortar pharmacies that obtain certification from manufacturers to dispense the drug to people in person or through mail with a prescription.

So far, 18 independent brick-and-mortar pharmacies are dispensing mifepristone, and larger drugstore chains may soon join their ranks.

It’s important to note that since approving mifepristone, the FDA has required prescribers to be certified — which means they have to register with the drugmaker. Pharmacies too need to be certified. Advocates say this requirement further limits who can distribute the drug.

In June 2022, the U.S. Supreme Court overturned Roe v. Wade, striking down the constitutional right to abortion and allowing individual states to decide on access to abortion. Since the decision, 14 states have banned abortion altogether. Those bans apply to both surgical and medication abortions.

Misoprostol and misoprostol-only abortions

The second pill used in the two-pill regimen for medication abortion is misoprostol. The pill is approved by the FDA to prevent stomach ulcers in people at high risk of developing them. It was first approved in 1988.

Even though the FDA hasn’t approved it for medication abortion, misoprostol is used off-label as part of the approved two-pill regimen for medication abortion.

Off-label use means health care providers prescribe a drug for diseases or conditions for which it’s not approved by regulatory bodies such as the FDA. They do so when they deem its use is medically appropriate for the patient.

It is also used worldwide for medication abortion, medical management of miscarriage, induction of labor, and treatment of postpartum bleeding. The drug causes the uterus to cramp and expel pregnancy tissue.

The pill can be used alone for medication abortion.

The World Health Organization has endorsed the use of misoprostol-only for ending a pregnancy in parts of the world where mifepristone is not available. Studies have shown the regimen is safe and effective, although it may have more side effects compared with the two-medication regimen.

A study published in JAMA Network Open in October 2023 finds that misoprostol alone is highly effective in self-managed medication abortions.

Abortion with misoprostol alone is rare in the U.S. but the a legal ban on mifepristone could have made it it the only option for some individuals, she says.

“What our study adds is that under the worst-case scenario in which mifepristone is removed, it doesn’t mean that there’s a ban on medication abortion,” says Ruvani Jayaweera, an epidemiologist and research scientist at Ibis Reproductive Health, a nonprofit organization that conducts social science research primarily on access to abortion and contraception around the world. “Our hope is that this study provides assurance to providers and people who are using misoprostol alone, whether it’s in a clinic-based setting or a telehealth setting or a self-managed setting, about the effectiveness of this method.”

Accessing abortion pills

Abortion pills are prescription medications in the U.S. Individuals in states where abortion is still legal can obtain them from licensed providers in person or via telehealth.

Abortion is currently banned in 14 states. Eleven states have laws limiting abortion between six and 22 weeks. Twelve of the 36 states where abortion is available have restrictions on prescribing medication abortion via telehealth, according to the Kaiser Family Foundation.

In response, activists have created networks of support to help individuals access abortion pills, explains Carrie N. Baker, a contributing editor to Ms. Magazine and professor at Smith College who studies and teaches courses on gender, law and public policy.

“The mainstream press is not adequately paying attention to what’s happening in the United States with regard to the underground network of abortion pill access,” says Baker, who has a forthcoming book on the history and politics of abortion pills in the United States.

These networks have also existed to help individuals around the world.

Europe-based Aid Access mails the medication abortion regimen — mifepristone and misoprostol — to all 50 states, regardless of abortion restrictions. There are other U.S.-based services, including Plan C, which provides people with available options to get abortion pills based on the state they live in.

In a November 2022 research letter published in JAMA, Aid Access reported that after the U.S. Supreme Court overturned Roe v. Wade, the average daily requests for telemedicine services for medication abortion increased from 82.6 to 231.7.

In the U.S., prescribing abortion medications via telehealth is nuanced based on state abortion laws.

For instance, U.S.-based virtual reproductive and sexual health clinic Hey Jane and online pharmacies like Honeybee can provide care and ship the pills to people in states where abortion is not banned. In all states, people may obtain medication abortion from alternative telemedicine services, online websites, or community networks, though the legal risk of each of these options may differ depending on the state. Services like ReproLegal Helpline help guide individuals on laws in their state, Jayaweera says.

Also, physicians in states that have passed shield laws can also prescribe medications via telemedicine to people in states where abortion is banned. So far, several states including Washington, Colorado, Massachusetts, Vermont, New York and California have passed telemedicine shield laws for health providers.

Abortion shield laws “seek to protect abortion providers, helpers, and seekers in states where abortion remains legal from legal attacks taken by antiabortion state actors,” according to a review article published in The New England Journal of Medicine in March 2023. Seven states so far have enacted a shield law since the overturn of Roe v. Wade.

But it’s important to know and note that those laws don’t protect individuals, Jayaweera says.

“One of the things to be especially sensitive to is with telemedicine or online models is that even if the risk is very much minimized for the provider, the legal risk falls on the individual in restricted states,” she says, underscoring the importance of educating individuals about those risks during counseling.

Self-managed abortion

Self-managed abortion is when individuals use medication abortion without medical supervision, ordering pills via telehealth, online pharmacies, mail or in-person.

Worldwide, most medication abortions are self-managed, Jayaweera says.

As a reminder, although the drugs are shown to be safe and effective, the individuals who use self-managed abortion may face legal risks, explain Drs. Daniel Grossman and Nisha Verma in a viewpoint published in JAMA in November 2022.

“Resources like the If/When/How legal helpline may be useful for patients and clinicians who are trying to understand their legal risks related to self-managed abortion. Patients requesting emotional support could be connected with resources that provide free confidential talk lines,” the authors write.

Worldwide, 22 countries ban abortion altogether, according to the Center for Reproductive Health, a global advocacy organization, and many others restrict it. This has given rise to safe abortion hotlines and “accompaniment groups” of people who have training in abortion counseling for individuals who are using medication abortion.

They also “provide a lot of empathetic counseling throughout the process and provide people with additional assurance and support and to help them understand if what they are experiencing is normal, or if they need to seek care,’” says Jayaweera.

She was part of a research team that found the outcomes of self-managed abortions were comparable to the ones performed under clinical supervision. The study, among others, contributed to the World Health Organization revising its guidelines last year to add self-managed abortion in early pregnancy to its abortion guidelines.

National organizations including the American Medical Association and the American College of Obstetricians and Gynecologists oppose the criminalization of self-managed abortion because it deters patients from seeking care when complications occur, write Dr. Lisa H. Harris and Daniel Grossman in a review article published in the New England Journal of Medicine in March 2020.

“Given the safety of the combination of mifepristone and misoprostol for self-managed abortion, the biggest danger to patients may be legal prosecution,” the study authors add. “Doctors and health care institutions must develop strategies that favor effective, compassionate clinical care over legal investigation of patients.”

A note on abortion ‘reversal’ pills

On Oct. 30, a judge in Kansas blocked a state law that requires health care providers to tell patients that medication abortion can be reversed, despite a lack of scientific evidence. A few days earlier, in Colorado, a federal judge ruled that a Catholic medical center can’t be stopped from offering medication abortion “reversal” treatment.

So-called abortion medication “reversal” treatment involves taking a dose of the hormone progesterone in an attempt to stop the effects of mifepristone, but it’s important for journalists to inform their audiences that “reversal” of medication abortion is not supported by science. (The Associated Press recommends using quotation marks in order to stress the lack of scientific evidence.) The American College of Obstetricians and Gynecologists has publicly stated that it does not support the treatment.

“Despite this, in states across the country, politicians are advancing legislation to require physicians to recite a script that a medication abortion can be ‘reversed’ with doses of progesterone, to cause confusion and perpetuate stigma, and to steer women to this unproven medical approach,” reads a statement on ACOG’s website. “Unfounded legislative mandates like this one represent dangerous political interference and compromise patient care and safety.”

Between 2012 and 2021, 14 states had enacted abortion “reversal” laws, according to a February article in the American Journal of Public Health.

“States largely use explicit language to describe reversal, require patients receive information during preabortion counseling, require physicians or physicians’ agents to inform patients, instruct patients to contact a health care provider or visit abortion pill reversal resources for more information, and require reversal information be posted on state-managed Web sites,” the authors write. “Reversal laws continue a dangerous precedent of using unsound science to justify laws regulating abortion access, intrude upon the patient‒provider relationship, and may negatively affect the emotional and physical health of patients seeking [a medication abortion].”

A 2020 randomized controlled study of medication abortion reversal, involving 40 patients, ended early because of safety concerns for 12 participants. Some of the women in the study received 400 mg of progesterone after taking mifepristone to “reverse” the abortion. Others were given a placebo after taking mifepristone. Three patients – one had taken progesterone and two had received placebo – had severe hemorrhage and required ambulance transport to the hospital, the authors write.

“We could not estimate the efficacy of progesterone for mifepristone antagonization due to safety concerns when mifepristone is administered without subsequent prostaglandin analogue treatment. Patients in early pregnancy who use only mifepristone may be at high risk of significant hemorrhage,” they write in the study.

A March 2023 systematic review of four studies finds, “based mostly on poor-quality data, it appears the ongoing pregnancy rate in individuals treated with progesterone after mifepristone is not significantly higher compared to that of individuals receiving mifepristone alone.”

A 2015 systematic review of 11 studies on medication abortion reversal during the first trimester of pregnancy finds “evidence is insufficient to determine whether treatment with progesterone after mifepristone results in a higher proportion of continuing pregnancies compared to expectant management.”

Research roundup

The following roundup of systematic reviews examines the safety and effectiveness of medication abortion. They are listed by publication date. The list is followed by additional research and reporting resources.

Effectiveness and Safety of Misoprostol-Only for First-Trimester Medication Abortion: An Updated Systematic Review and Meta-Analysis
Elizabeth G. Raymond, Mark A. Weaver, and Tara Shochet. Contraception, November 2023.

A review of 49 published studies, including a total of 16,354 patients, finds misoprostol-only is effective and safe for the termination of first-trimester pregnancy, especially when mifepristone is not available.

“Technically An Abortion”: Understanding Perceptions and Definitions of Abortion in the United States
Alicia J. VandeVusse, et al. Social Science & Medicine, October 2023.

The study is based on in-depth interviews of 64 cisgender women and 2009 participants in an online survey. Individuals were asked about their understanding of pregnancy outcomes including abortion and miscarriage. “The blurred boundaries between different types of pregnancies and their outcomes emphasize the differences in people’s notions of what constitutes an abortion,” the authors write. “It shapes how abortion stigma can arise across different pregnancy outcomes, as well as people’s own perceptions of the care they have sought, the legality of this care, and their experience in accessing it. Understanding how people construct boundaries around abortion allows for more effective healthcare messaging and advocacy, which is increasingly relevant as legal restrictions on abortion mount while telemedicine and medication abortion become more widely available to some.”

Requests for Self-managed Medication Abortion Provided Using Online Telemedicine in 30 US States Before and After the Dobbs v Jackson Women’s Health Organization Decision
Abigail R. A. Aiken, et al. JAMA, November 2022.

The authors analyze anonymized requests for abortion pills to Aid Access, a Europe-based abortion pill provider. They analyzed the requests before Roe v. Wade was overturned, after the decision was leaked, and after the decision was announced. They find that each of the 30 states from which requests came, regardless of abortion policy, showed a higher request rate after the leak and announcement compared to before. The largest increases were in states that enacted total bans on abortion.

Systematic Review of the Effectiveness, Safety, and Acceptability of Mifepristone and Misoprostol for Medical Abortion in Low- and Middle-Income Countries
Ian Ferguson and Heather Scott. Journal of Obstetrics and Gynaecology Canada. April 2020.

A review of 36 studies, including a total of 25,385 medical abortions, finds the combination of mifepristone and misoprostol is “highly effective, safe, and acceptable to women in low- and middle-income countries, making it a feasible option for reducing maternal morbidity and mortality worldwide.” Among a group of 17,381 women, 0.8% required hospitalization.

Telemedicine for Medical Abortion: A Systematic Review
M. Endler, et al. British Journal of Obstetrics and Gynaecology, March 2019.

A review of 13 studies, mostly based on self-reported data, finds the rates of complete abortion, hospitalization, and blood transfusion after abortion through 10 weeks of pregnancy were at similar levels to those reported after in-person abortion care in the published studies.

First-Trimester Medical Abortion with Mifepristone 200 mg and Misoprostol: A Systematic Review
Elizabeth G. Raymond, Caitlin Shannon, Mark Weaver, and Beverly Winikoff. Contraception, January 2013.

A review of 87 studies, including a total of 47,283 women, finds medical abortion in early pregnancy with 200 mg mifepristone followed by misoprostol is highly effective and safe.

Additional research

Mail-Order Pharmacy Dispensing of Mifepristone for Medication Abortion After In-Person Screening
Daniel Grossman, et al. JAMA Internal Medicine, May 2024.

Pharmacists’ Experiences Dispensing Misoprostol and Readiness to Dispense Mifepristone
Meron Ferketa, et al. Journal of the American Pharmacists Association, October 2023.

Medication Abortion Safety and Effectiveness With Misoprostol Alone
Ruvani Jayaweera, et al. JAMA Network Open, October 2023.

Prior Cesarean Birth and Risk of Uterine Rupture in Second-Trimester Medication Abortions Using Mifepristone and Misoprostol: A Systematic Review and Meta-analysis
Andrea Henkel, et al. Obstetrics & Gynecology, October 2023.

Changes in Induced Medical and Procedural Abortion Rates in a Commercially Insured Population, 2018 to 2022
Catherine S. Hwang, et al. Annals of Internal Medicine, October 2023.

Explaining the Fifth Circuit Court of Appeals Ruling on Mifepristone Access
Molly A. Meegan, JAMA, October 2023.

Effectiveness of Self-Managed Medication Abortion Between 9 and 16 Weeks of Gestation
Heidi Moseson, et al. Obstetrics & Gynecology, August 2023.

Comparison of Mifepristone Plus Misoprostol with Misoprostol Alone for First Trimester Medical Abortion: A Systematic Review and Meta-Analysis
Tariku Shimels, Melsew Getnet, Mensur Shafie, and Lemi Belay. Frontiers in Global Women’s Health, March 2023.

Experiences Seeking, Sourcing, and Using Abortion Pills at Home in the United States Through an Online Telemedicine Service
Melissa Madera, et al. Social Science & Medicine: Qualitative Research in Health. December 2022.

Abortion Surveillance — United States, 2020
Katherine Kortsmith, et al. Morbidity and Mortality Weekly Report, November 2022.

Mifepristone: A Safe Method of Medical Abortion and Self-Medical Abortion in the Post-Roe Era
Elizabeth O. Schmidt, Adi Katz, and Richard A. Stein. American Journal of Therapeutics, October 2022.

Effectiveness of Self-Managed Abortion During the COVID-19 Pandemic: Results From a Pooled Analysis of Two Prospective, Observational Cohort Studies in Nigeria
Ijeoma Egwuatu, et al. PLOS Global Public Health, October 2022.

Increasing Access to Abortion
American College of Obstetricians & Gynecologists, December 2020.

Abortion Pill “Reversal”: Where’s the Evidence
Advancing New Standards In Reproductive Health, July 2020.

A Qualitative Exploration of How the COVID-19 Pandemic Shaped Experiences of Self-Managed Medication Abortion with Accompaniment Group Support in Argentina, Indonesia, Nigeria, and Venezuela
Chiara Bercu, et al. Sexual and Reproductive Health Matters, June 2022.

Medical Abortion in the Late First Trimester: A Systematic Review
Nathalie Kapp, Elisabeth Eckersberger, Antonella Lavelanet, Maria Isabel Rodriguez. Contraception, February 2019.

Continuing Pregnancy After Mifepristone and “Reversal” of First-Trimester Medical Abortion: A Systematic Review
Daniel Grossman, et al. Contraception, September 2015.

Medical Compared With Surgical Abortion for Effective Pregnancy Termination in the First Trimester
Luu Doan Ireland, Mary Gatter, Angela Y. Chen. Obstetrics & Gynecology, July 2015.

Resources

What to Know About Fetal Viability — And Why Some Advocates Want It Out of Abortion Law
Mary Chris Jaklevic. Association of Health Care Journalists’ Covering Health blog, October 2023.

#WeCount: A series of reports by the Society of Family Planning aiming to capture the shifts in abortion volume by state and month following the Supreme Court decision to overturn Roe.

History and Politics of Medication Abortion in the United States and the Rise of Telemedicine and Self-Managed Abortion
Carrie N. Baker. Journal of Health Politics, Policy and Law, August 2023.

Mifepristone U.S. Post-Marketing Adverse Events Summary through 12/31/2022
Food and Drug Administration

Questions and Answers on Mifepristone for Medical Termination of Pregnancy Through Ten Weeks Gestation
Food and Drug Administration

Key Facts on Abortion in the United States
Usha Ranji, Karen Diep and Alina Salganicoff. Kaiser Family Foundation, August 2023.

The Availability and Use of Medication Abortion
Kaiser Family Foundation, June 2023.

A Review of Exceptions in State Abortions Bans: Implications for the Provision of Abortion Services
Kaiser Family Foundation, May 2023.

State Requirements for the Provision of Medication Abortion
Kaiser Family Foundation, April 2023.

Are Abortion Pills Safe? Here’s the Evidence.
Amy Schoenfeld Walker, Jonathan Corum, Malika Khurana, and Ashley Wu. The New York Times, April 2023.

Abortion Care Guideline
World Health Organization, March 2022.

Center for Reproductive Rights provides a global view of abortion.

Abortion Facility Database by Advancing New Standards in Reproductive Health, based at the University of California San Francisco, is a research program that informs the most pressing debates on abortion and reproductive health.

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Racial disparities in drowning deaths persist, research shows https://journalistsresource.org/health/racial-disparities-in-drowning-deaths-persist-research-shows/ Thu, 16 May 2024 17:53:00 +0000 https://journalistsresource.org/?p=68149 This explainer includes info on fatal drowning trends over the past two decades; recent reports on disparities in fatal drowning rates among Black, Alaska Native and American Indian youth; the role of climate change and the COVID-19 pandemic; and research on prevention.

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This piece, originally published in July 2021, was updated in May 2024 with new data from the Centers for Disease Control and Prevention and the findings of two recent studies on drowning prevention interventions.

Worldwide, at least 235,000 people fatally drown each year, making it one of the leading causes of injury-related death. The U.N. General Assembly has said drowning is “largely unrecognized relative to its impact.”

In the United States, drowning deaths are on the rise after decades of decline. More than 4,500 people drowned each year from 2020 to 2022, according to the most recent data from the Centers for Disease Control and Prevention. That’s about 500 more drowning deaths each year compared with 2019, the agency reported.

While local news stories about drownings — fatal or non-fatal — often focus on single events, journalists have the power and responsibility to inform their audience with statistics, trends and research on prevention. As noted in a 2019 report in the Health Promotion Journal of Australia, “Transmission of messages about drowning risk factors and prevention strategies, during summer, may lead to behavior change at a time when drowning risk is highest.”

Drowning is medically defined as the process of experiencing respiratory impairment from submersion or immersion in liquid. Drowning can be fatal, non-fatal with no injuries or non-fatal with injuries. In the U.S. there are about twice as many non-fatal drownings each year, which can lead to long-term health problems and costly hospital stays, according to the CDC

This explainer includes information on fatal drowning trends over the past two decades; the findings of three recent reports on racial disparities in fatal drowning rates; the factors contributing to disparities in drowning death rates among Black, Alaska Native and American Indian youth; the role of socioeconomic status; the role of climate change and the COVID-19 pandemic; and, finally, research on prevention.

An overview

Downing deaths differ by age and race and ethnicity.

For children aged 1 to 4, drowning rates increased by 28% in 2022 compared with 2019. For adults aged 65 to 74, drowning rates increased by 19% in that period, according to the CDC.

Among racial and ethnic groups, American Indian or Alaska Native people have historically had the highest rates of drowning deaths, followed by Black people. In 2021, drowning deaths among Black people increased by 28% compared with 2019, while the rates remained unchanged for AIAN people, the 2024 CDC data shows.

The greatest percentage of drowning deaths in babies under 1 year occur in bathtubs; in swimming pools in children between 1 and 13; and in natural bodies of water such as lakes, rivers, streams, and oceans in youth between ages 14 and 17, according “Unintentional Drowning Deaths Among Children Aged 0–17 Years: United States, 1999–2019,” released in July by CDC’s National Center for Health Statistics.

Some groups, including males, children and people with underlying medical conditions have a higher risk of fatal drowning. Also, factors like inability to swim, lack of close supervision, place of swimming and use of alcohol during water activities make drowning more likely.

In the U.S. roughly 40 million adults don’t know how to swim, including 37% of Black adults, compared to 15% of all adults. More than 60% of Black adults and 72% of Hispanic adults reported never taking a swimming lesson, the latest CDC data shows. Among all adults, nearly 55% have never taken a swimming lesson.

In the 2018 study “Predictors of Swimming Ability among Children and Adolescents in the United States,” published in Sports, researchers found that parents have a strong influence on kids’ ability to swim. Other factors that were positively associated with swimming ability included knowledge of water safety, having access to pools that were open all year and having a best friend who enjoys swimming.

There are still many unanswered questions about drowning, partly due to gaps in data and lack of research.

Many studies that look at fatal drowning data use death certificates, which don’t have information on the circumstances of drowning, details of known risks or other potential social or cultural influences, leaving a gap in better understanding of drowning data.

In addition, there are fewer studies on drowning compared with other unintentional injuries.

In “NIH Portfolio of Unintentional Injury Research Among Racial and Ethnic Minority Children: Current Landscape and Future Opportunities,” published in the Journal of Racial and Ethnic Health Disparities in July 2020, researchers found that between 2011 and 2018, 130 NIH-funded grants examined unintentional injuries — fatal and non-fatal — such as burns, drownings, falls, poisoning and car accidents. Of those, 34 were focused on children. And of the 34, eight focused on racial and ethnic minority children. Of the eight, half studied car injuries and none focused on drowning.

“In my mind, drowning prevention is the poor cousin in injury prevention,” says Dr. Linda Quan, a professor in the Department of Pediatrics at the University of Washington School of Medicine whose area of research includes drowning prevention and pediatric resuscitation. For motor vehicle injuries, which have received far more attention, there’s the National Highway Traffic Safety Board, or NHTSA, at the federal level. “But we don’t have really any kind of unity or single organization to push drowning prevention,” she says.

In “Interventions associated with drowning prevention in children and adolescents: systematic literature review,” published in Injury Prevention in 2015, researchers looked at academic literature about drowning prevention in children and teens, published between 1980 and 2010, and found that “few studies employ rigorous methods and high levels of evidence to assess the impact of interventions designed to reduce drowning.” The studies, the authors wrote, lacked consistency in measuring outcomes and the use of drowning terminology.

For instance, the study authors use the terms “fatal” and “non-fatal” drowning instead of “immersion,” “submersion,” “drowning” and “near drowning.”

“Terms such as ‘near-drowning,’ ‘dry or wet drowning,’ ‘active and passive drowning,’ ‘secondary,’ and ‘delayed onset of respiratory distress’ should not be used,” according to BMJ Best Practice.

Another term used by researchers is “water competency.” Water Safety USA, a roundtable of several national nonprofit and governmental organizations with a focus on drowning prevention and water safety programs, defines water competency as the ability to anticipate, avoid and survive common drowning situations in addition to being able to recognize and provide assistance to those in need. It also includes water safety awareness, basic swimming skills and helping others.

To be sure, drowning death rates declined by 32% in the U.S. and 57% worldwide between 1990 and 2017, thanks to educational campaigns and increased awareness. The rate of unintentional drowning deaths among children aged 0 to 17 years declined 38% in the U.S., according to the CDC report. But disparities in certain racial and ethnic groups have persisted.

Percentage of unintentional drowning deaths among children aged 0 to 17, by age group and place of drowning: United States, 2018–2019.
Source: National Center for Health Statistics’ study “Unintentional Drowning Deaths Among Children Aged 0–17 Years: United States, 1999–2019.”

Three 2021 reports to help you report on disparities in drowning deaths

Three reports released in June and July show that some racial disparities in drowning deaths exist and have persisted for more than 20 years, even though overall drowning death rates have declined.

Each report focuses on a slightly different age group, but they all show similar trends by age, sex, place of drowning, race and ethnicity.

Specifically, the reports show that disparities in drowning death rates are largest among Black, American Indian and Native Alaskan youth compared to whites, while there are little or no disparities among Hispanics, Asians, Pacific Islanders and whites.

The first study, “Persistent Racial/Ethnic Disparities in Fatal Unintentional Drowning Rates Among Persons Aged ≤29 Years — United States, 1999–2019,” published in the June 18 issue of CDC’s Morbidity and Mortality Weekly Report, shows that the drowning death rate among American Indian and Alaska Native people under 30 was twice as high as the drowning death rates for white people, while the rate for Black people was 1.5 times that of whites.

“Disproportionately high drowning death rates among certain racial and ethnic groups represent an important health equity issue,” says Dr. Tessa Clemens, a health scientist in the division of injury prevention at the CDC and one of the authors of the CDC study. “So, I think progress towards eliminating drowning in the United States, which is our goal — for there to be zero drowning — will only occur if we address these inequities and reduce drowning death rates in all groups.”

Fear of drowning has been identified as one factor contributing to limited swimming ability in some Black youths, write the authors. They point to the 2019 study “Vanishing Racial Disparities in Drowning in Florida,” published in Injury Prevention, which shows a reduction in drowning disparities between Black and white children potentially due to community-level initiatives to teach Black children how to swim.

The authors also point out an important limitation in the death certificate data, which they used for their study: the race and ethnicity on death certificates are reported by next of kin or by observation and people who identify as American Indian/Alaska Native, Asian or Hispanic are sometimes reported as white or non-Hispanic on death certificates, “leading to possible underestimations of deaths among these groups,” the authors write. “Proxy reporting of race/ethnicity is especially inaccurate for AI/AN persons.”

A 2016 CDC Vital and Health Statistics report “The Validity of Race and Hispanic-origin Reporting on Death Certificates in the United States: An Update,” found that while reporting for whites and Blacks has been “excellent” and had improved between 1979 to 2011 for Hispanics and Asian or Pacific Islanders, it has been poor for American Indian or Alaska Natives, where as many as 40% were misclassified on death certificates. The decedent’s country of birth and the racial and ethnic composition of where they lived at death have important effects on the quality of death certificate race and ethnicity reporting, the authors write.

“So an important message that we have in this study is that further research is really needed on the determinants that contribute to these disparities so that we can understand what’s driving them and what are the barriers to implementing effective drowning prevention programs in the communities that are at highest risk of drowning,” says Clemens.

Unintentional drowning death rates among children aged 0 to 17 years, by age group:
United States, 1999–2019.
Source: National Center for Health Statistics’ study “Unintentional Drowning Deaths Among Children Aged 0–17 Years: United States, 1999–2019.”

The second report of note is the American Academy of Pediatrics’ technical report “Prevention of Drowning,” released in mid-July and forthcoming in the August issue of Pediatrics. It shows that from 2014 to 2018, in babies and children under 19, fatal drowning rates were highest among Black and American Indian and Alaska Native individuals. And while most white children died in residential pools, Black youths were most likely to die in a public pool, often at a motel or hotel.

Many times those pools are not supervised or don’t have a lifeguard on duty, says Quan, who is one of the study’s co-authors.

The American Academy of Pediatrics’ report also notes that there is “no data to support a recommendation for infant swim lessons. Aquatic programs for young children (especially those younger than 1 year) pose some medical concerns, and initiation of a swim program should be discussed between an infant’s caregiver and pediatrician.”

And the third report, “Unintentional Drowning Deaths Among Children Aged 0–17 Years: United States, 1999–2019,” released in July by CDC’s National Center for Health Statistics, shows that in the study’s two-decade period, fatal drowning rates were higher for Black children than for white or Hispanic children. Rates were also higher for children living in rural counties compared with urban counties. After declining from 1999 through 2003, the unintentional drowning death rate for Black children remained stable from 2003 through 2019, the report shows. Meanwhile, drowning rates for white and Hispanic children showed a steady decline during those years.

Drowning disparities among Black youth

Some of the contributing factors to higher drowning rates, particularly among Black children, are poor swimming skills in both children and their parents, lack of swim training during childhood, and lack of lifeguards at motel and hotel pools, according to the American Academy of Pediatrics’ new report.

“With no physiologic differences to explain the difference in drowning risk, race and ethnicity are likely a proxy for social and cultural differences between the groups,” the report adds.

A look back at U.S. history also helps explain why Black children and their parents are less likely to swim. Black families had limited access to public swimming pools not only during segregation but also afterward.

“When public swimming pools were racially desegregated, the reaction to that was for individuals and communities to invest money in private swimming pools,” says Jeff Wiltse, a history professor at the University of Montana and author of the 2010 book “Contested Waters: A Social History of Swimming Pools in America.” “The shift from public provision to private provision was in large part, not entirely, but was in large part driven by racial desegregation.”

Many public swimming pools closed and for Black families who didn’t have the means to join private clubs or pay for expensive swimming lessons, lack of access to public swimming pool continued after desegregation in the 1960s.

“This past discrimination casts a long shadow,” writes Wiltse in his 2014 paper “The Black-White Swimming Disparity in America: A Deadly Legacy of Swimming Pool Discrimination,” published in the Journal of Sports and Social Issues. “As a result of limited access to swimming facilities and swim lessons and the unappealing design of most pools earmarked for Blacks, swimming did not become integral to the recreation and sports culture within African American communities.”

Wiltse says that lack of access to swimming pools is “largely responsible for this contemporary disparity,” and says that generally, lack of swimming ability contributed to drowning deaths.

“In my mind, the lower swimming rates among Black Americans partly contributed to the higher drowning rates,” he says.

Unintentional drowning death rates among children aged 0 to 17 years, by race and Hispanic origin: United States, 1999–2019.
Source: National Center for Health Statistics’ study “Unintentional Drowning Deaths Among Children Aged 0–17 Years: United States, 1999–2019.”

Drowning disparities among American Indian and Native Alaskan youth

There’s a dearth of research on what’s driving drowning disparities between American Indian and Alaska Native youth compared with whites.

“Swimming skill and other factors contributing to increased drowning risk in AI/AN persons have not been thoroughly explored,” write the authors of the June CDC study.

But Dean Seneca, CEO and founder of the consulting firm Seneca Scientific Solutions+ and an adjunct professor at the University at Buffalo who is teaching a class on Indigenous health disparities, points to a few contributing factors.

Many reservation communities don’t have swimming pools, he says.

“Our exposure to swimming at a very early age is very limited if you compare that to other populations,” says Seneca, a Seneca Indian.

In Alaska, even though many of the villages are by the water, people rarely go for a swim because the water is cold, even in the summertime. The majority of the villages don’t have swimming pools, Seneca says.

Also, Alaska Natives are more likely to have water-related jobs, without proper safety equipment, thus increasing their risk of drowning. Many go fishing and practice subsistence to feed their family.   

“Did they go on ice with their snowmobile? Was it working properly? Were they putting themselves in a risky situation?” says Seneca, adding that many drownings happen under the influence of alcohol or other substances.

And in many tribes, a focus on swimming is not a top priority.

“We don’t have the prevention messaging in many communities to educate on the seriousness of swimming and drowning,” he says. Also, “look at the Navajo Nation and many of our tribes in the Southwest. They’re struggling just to have water. They don’t even have running water to drink. A pool is probably a last priority.”

Seneca advises journalists to dig deeper into data by looking at Indian Health Services’ reports and contacting tribal epidemiology centers for more information.

Interventions work but they take funding, which Seneca says is severely lacking.

In the widely-cited 2003 study “Reducing Injuries Among Native Americans: Five Cost-Outcome Analysis,” published in Accident Analysis & Prevention, researchers reported that drowning rates dropped by 53% after local residents who used Alaska’s Yukon and Kuskokwim rivers as the primary mode of transportation were offered light-weight coats that doubled as floatation devices.

“To sell the floating properties of the coats to the public, tribal elders suggested a culturally appropriate marketing message: ‘Wear a float coat so that if you drown, people will not have to drag the river for your body,'” the authors write. “This message resonated strongly with communities accustomed to hours and days of uncertainty surrounding most drownings.”

Role of income

Studies haven’t shown that income level is an independent predictor of swimming ability, but some studies have shown an association.

In “Childhood unintentional injury: The impact of family income, education level, occupation status, and other measures of socioeconomic status. A systematic review,” published in Feb. 2021 in Pediatrics and Child Health, researchers looked at 54 studies between 1997 and 2017 on children 19 years and younger. They found that while most studies report higher injury rates among lower-income populations, results vary based on the type of injury and factors such as parental income or education and household size. For instance, 18 of the studies found a significant relationship between income and unintentional childhood injuries. Six studies that focused on traumatic dental injuries found no significant association, while three others did. One study reported that high family income was associated with an increased risk of traumatic dental injury in children.

Of the 54 studies, only one study, from Bangladesh, looked at drownings and found that a mother’s education was a risk factor of increased childhood drowning deaths, the authors report.  

In its new report, the American Academy of Pediatrics writes that “inadequate funding for pools, swimming programs, and lifeguards, as well as the cost associated with swimming lessons, may affect water competency and community resources for low-income populations.”

Wiltse calls this a class-based disparity.

“We’re going to find, especially in children of poor and working-class Americans of all races, drowning at a much higher rate than the children of middle- and upper-class Americans,” he says. “I think that’s the piece that the media reporting hasn’t begun to recognize. And unless we reverse, and again reinvest in public swimming pools and swim lessons at public pools, I think we’re going to see worsening of growing drowning disparities along class lines.”

Photo by Debby Hudson on Unsplash

Role of climate change and the COVID-19 pandemic

Some studies are starting to show that warmer winters could result in more fatal drownings.

In the study “Increased winter drownings in ice-covered regions with warmer winters,” published in PLOS One in Nov. 2020, researchers found that winter drownings increased as winter air temperatures got warmer and closer to 32 F, partly because ice covers on bodies of water became more unpredictable.

“The complex nature of changing winters including warming temperatures, rain on snow, and freeze-thaw events could decrease the stability of ice, suggesting that the risk of winter drowning may increase until lakes become completely ice-free,” the authors write.

Researchers used detailed data from Minnesota and found that the most vulnerable age groups for winter drowning were children and young adults. Most children drowned while playing or skating on thin ice. “The risk of drowning was exacerbated by curiosity, inadequate supervision, and a lack of risk-awareness and water-safety education,” the authors write.

As for the COVID-19 pandemic and its impact on drowning death rates in 2020 and so far this year, some local news reports have documented increases. The Boston Globe reported 18 drownings in Massachusetts in May, more than the previous three Mays combined. MLive reported 56 drownings in Lake Michigan in 2020, breaking the previous record of 49 in 2012. And according to the StarTribune, more people have drowned in Minnesota so far this year than in the same period for each of the past nine years.  

Meanwhile, home pool sales increased by 21% last year compared with 2019, according to ConsumerAffairs.

But there’s a lag in government data analysis and it might be too soon to tell whether a year of isolation and canceled activities like swimming lessons have led to a significant increase in fatal drownings nationwide.

“We have not been able to look at the data yet,” says Clemens of CDC. “We’re waiting for the final 2020 data to be able to look at whether there’s actually a significant difference in drowning numbers over previous years.”

Solutions

Many studies on drowning call for promoting basic swimming and water safety skills, installing barriers around pools, proper use of life jackets, active supervision of kids in the water and knowing how to perform CPR.

In his aforementioned study, Wiltse writes, “affordable, accessible, and, most importantly, appealing swimming pools are needed to popularize swimming among Black Americans and expand access for poor and working-class Americans more generally.”

A 2023 review of 22 English-language studies on drowning prevention interventions, including research published between 2011 and 2021, finds small but important changes in a range of outcomes. These include changes in awareness, water safety knowledge, attitudes, water safety behaviors and skills, policy changes and drowning rates. The interventions included swimming lessons, mandatory personal floatation devices, awareness campaigns and barriers to prevent access to water. One experimental study, published in 2019 in the journal Injury Epidemiology, finds that posting a sign at a park, informing visitors that water entry was illegal and could result in a fine exceeding $200, reduced the odds of someone entering the water by 63%.

A 2024 review of 47 English-language studies on life jackets finds that overall, life jacket usage is low — but that life jackets are highly effective at preventing drowning when people wear them. The authors underscore the significance of targeted interventions, regulation and educational programs that promote the use of life jackets to reduce drowning incidents. They also highlight the role of health care professionals in educating patients about the benefits and proper use of life jackets.

In the Dec. 2020 study “Adolescent Water Safety Behaviors, Skills, Training and Their Association with Risk-Taking Behaviors and Risk and Protective Factors,” published in Children, Quan and colleagues recommend diversity in swimming education. “Water safety education programs must include input from culturally diverse and immigrant populations throughout program development and implementation and provide information for parents in languages other than English,” Quan and colleagues write. “Furthermore, it’s essential that water safety programs recruit and retain lifeguards, swimming instructors, program administrators, and educators that reflect the communities that they aim to reach.”

Some researchers also suggest including water safety training in school curriculums.

Shawn Slevin, executive director of Swim Strong Foundation, a nonprofit organization in New York City, is working on legislation to mandate water safety training in New York State schools.

The Pew Charitable Trusts’ Stateline reported on July 15 that drowning prevention could be getting a boost in the federal budget. The story also provides a roundup of drowning prevention legislation in several states.

“The ability to enter a safe body of water during a warm summer is one of the real pleasures of life,” says Wiltse. “It’s an escape from the heat. It’s refreshing. It’s rejuvenating. It’s physically pleasurable. It’s mentally healthy and physically healthy. And I think it’s a matter of social justice. All people should have access to safe swimming venues. And just because you’re poor, working class, you shouldn’t be deprived of that pleasure.”

Story ideas and sources of drowning data

Check your community for local organizations that are offering free or no-cost swimming lessons to children and adults.

Check your county or state health department website for local and state data. Also check Indian Health Services’ reports and contact tribal epidemiology centers for more local information.

CDC’s WISQARS [Web-Based Injury Statistics Query and Reporting System] provides an interactive database about fatal and nonfatal injuries, violent deaths and cost of injury data.

CDC WONDER [Wide-ranging ONline Data for Epidemiologic Research] is another source of data. Use this Quick Start guide to learn how to use the system.

CDC’s Drowning Prevention website provides state-by-state drowning death rates.

Water Safety USA is a roundtable of several national nonprofit and governmental organizations with a focus on drowning prevention and water safety programs. The group is planning to publish the first-ever U.S. National Water Safety Action Plan, Pew’s Stateline reports.

The American Red Cross is another good source of drowning prevention information and facts.

If you’re looking to put together an info box for drowning prevention measures, the American Academy of Pediatrics and the CDC have helpful bullet points.

If you’re looking to learn more about disparities in recreational activities, here are three books to get you started: “Race, Riots, and Roller Coasters: The Struggle Over Segregated Recreation in America” by Victoria Wolcott. “The land was ours: how black beaches became white wealth in the coastal south” by Andrew Kahrl. “Contested Waters: A Social History of Swimming Pools in America” by Jeff Wiltse.

Remember that The Journalist’s Resource publishes its content under a Creative Commons license, meaning you’re free to republish this piece in your own news publication, provided you include author credit and a link back to the original piece. You’re also welcome and encouraged to embed the map and the Swimming Safety Tips graphic into your own stories.

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How influencers and content creators discuss birth control on social media: What research shows https://journalistsresource.org/health/how-birth-control-is-discussed-on-social-media/ Wed, 15 May 2024 15:13:50 +0000 https://journalistsresource.org/?p=78322 TikTok, YouTube and X are full of unsubstantiated claims about the side effects of hormonal contraceptives. Researchers are concerned about the effects of this misinformation.

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News articles in recent weeks have documented the spread of misinformation about hormonal birth control methods on popular social media platforms like TikTok, YouTube and X, formerly called Twitter. Influencers with large and small followings are sharing unsubstantiated claims about the side effects of contraceptives, while directly or indirectly encouraging others to stop using them.

This trend has not escaped researchers, who for several years have been investigating what people who can get pregnant are posting on social media platforms about hormonal and non-hormonal birth control methods. Understanding the drivers of these trends is important because they have implications for policy and patient care, according to researchers. Some worry that during the post-Dobbs era, when there are continued strikes against reproductive rights in the U.S., misinformation about birth control on social media could have a negative influence on contraceptive preferences — potentially leading to more unwanted pregnancies.

More than 90% of women of reproductive age have used at least one contraceptive method, according to a 2023 report by the U.S. National Center for Health Statistics. However, the report also finds that the use of male condoms and withdrawal methods increased between 2006 and 2019, while the use of the birth control pill decreased. Non-hormonal contraception methods, including condoms, spermicides, withdrawal and menstrual cycle tracking, are 10% or less effective than hormonal contraceptives. The only exceptions are surgical sterilization and the copper intrauterine device.

To be sure, not all birth control-related content posted on social media platforms is negative, studies show. Health care professionals are sharing educational material with a high rate of engagement and non-health care professional users share their positive experiences with the birth control methods they use.

But as you will see in the studies curated below, researchers also find that social media users, including influencers, share inaccurate information about hormonal contraceptives on various social media platforms, discuss their discontinuation of birth control in favor of non-hormonal methods and engage in unsubstantiated fear-mongering of hormonal contraceptives.

Researchers also have learned that the content posted on social media platforms has changed in tone over time, mirroring the shift in the national political discourse.

In a 2021 study published in the American Journal of Obstetrics & Gynecology, researchers analyzed more than 800,000 English-language tweets mentioning at least one contraceptive method between March 2006, when Twitter was founded, and December 2019. They coded the sentiment of tweets as positive, neutral or negative.

“What we found over time was that the number of neutral tweets went down for each and every one of the birth control methods, and people became more polarized with regards to how they talk on these social media platforms over those 13 years,” says study co-author Dr. Deborah Bartz, an OB-GYN at Brigham and Women’s Hospital with expertise in complex family planning and an associate professor at Harvard Medical School.

In a February 2024 commentary in the Journal of Women’s Health, University of Delaware researchers Emily Pfender and Leah Fowler argue that ongoing dialogue about contraception on social media provides “a glimpse into public sentiment about available options” to people who can get pregnant.

The authors also note that misinformation and disinformation about hormonal contraception may have a larger effect on health disparities, especially among historically marginalized groups who may already mistrust the medical establishment.

“This may contribute to unintended pregnancy and delayed care, further widening health disparities and hindering progress toward equitable reproductive health outcomes,” Pfender and Fowler write.

Side effects

There are known side effects to hormonal birth control methods, including headaches, nausea, sore breasts and spotting. Most are mild and disappear with continued use or with switching to another method. Among hormonal contraceptives, only the Depo-Provera injection has been linked with weight gain, studies show.  

But some social media influencers have spread false claims about the potential side effects of hormonal birth control methods, ranging from infertility to abortion to unattractiveness. Despite these false claims, physicians and professional organizations such as the American College of Obstetricians and Gynecologists find today’s contraceptive options safe and very effective.

“They’re about the most low-risk prescription that I give,” says Dr. Megana Dwarakanath, an adolescent medicine physician in Pittsburgh. “I always joke that if something goes wrong in someone’s life, they’re within the reproductive years, it always gets blamed on birth control.”

Dwarakanath says her young patients are most worried about two side effects: weight gain and mood. “Those are the things that they will almost always attribute to their birth control at a time that their bodies are also changing very rapidly,” she says. “Things like mental health diagnoses or personality disorders also tend to crop up during the time young people have started or have been on birth control.”

Most research on the link between oral contraceptives and cancer risk comes from observational studies, according to the National Cancer Institute. Overall, the studies have consistently shown that the risks of breast and cervical cancer are slightly increased for women who use oral contraceptives, whereas the risk of endometrial, ovarian and colorectal cancers are reduced.

The use of hormonal birth control has also been associated with an increase in the risk of developing blood clots, studies show. But that risk is not universal for everyone who takes hormonal birth control. This risk is higher for women 35 and older, those who smoke, are very overweight or have a history of cardiovascular disease. Overall, 3 to 9 out of 10,000 women who take the pill are at risk of developing blood clots within a given year. The risk for women who don’t take the pill is 1 to 5 out of 10,000.

There is no association between the pill and mood disorders, according to a large body of research, including a 2021 cohort study of nearly 740,000 young women. 

It’s worth noting the dearth of research into women’s reproductive health due to chronic underfunding of women’s health research. An analysis of funding by the U.S. National Institutes of Health finds that in nearly three-quarters of the cases where a disease affects mainly one gender, the institute’s funding pattern favored males. Either the disease affected more women and was underfunded, or the disease affected more men and was overfunded, according to the 2021 study published in the Journal of Women’s Health.

Aside from underfunding, conducting robust research into the long-term effects of birth control is complex.

“Historically, people haven’t felt that it’s ethically OK to randomize people to birth control methods in large part because the outcome of unintended pregnancy is greater,” for people who are given the placebo, Bartz says.

Research on birth control misinformation on social media

Social media use is widespread among young adults. More than 90% of Americans between 18 and 29 reported ever using YouTube, while 78% said they had used Instagram, 62% used TikTok and 42% used Twitter, according to a 2023 survey of 5,733 U.S. adults by Pew Research Center.

These years overlap with the demographic of people who are most likely to use birth control. And because the use of contraceptives is less stigmatized today, people are more likely to talk with one another about their questions and concerns or share that information online.

In addition to investigating the general landscape of social media posts about birth control, researchers are also interested in the type of content influencers, who typically have 20,000 or more followers, post, because of their persuasive power over their audiences.

“When influencers disclose personal experiences and beliefs about various topics, audience members tend to form similar attitudes especially when they feel connected to the influencer,” Pfender and M. Marie Devlin write in a 2023 study published in the journal Health Communication.

Below we have curated several studies published in recent years documenting the spread of birth control misinformation on social media. The roundup is followed by a quick reference guide on female contraceptives and their actual potential side effects.

Contraceptive Content Shared on Social Media: An Analysis of Twitter
Melody Huang, et al. Contraception and Reproductive Medicine, February 2024.

The study: The authors explore how contraceptive information is shared on X and understand how those posts affect women’s decisions. They analyze a random 1% of publicly available English-language tweets about reversible prescription contraceptive methods, from January 2014 and December 2019. The 4,434 analyzed tweets included at least 200 tweets per birth control method — IUDs, implants, the pill, patch and ring.

The findings: 26.7% of tweets about contraceptive methods discussed decision-making and 20.5% discussed side effects, especially the side effects of IUDs and the depot medroxyprogesterone acetate (DMPA or Depo-Provera) shot. Discussions about the pill, patch or ring prompted more discussions on logistics and adherence. About 6% of tweets explicitly requested information. Tweets about IUDs were most popular in terms of likes.

More importantly, 50.6% of the tweets were posted by contraceptive users, while only 6% came from official health or news sources. Tweets from news or journalistic sources were more frequent than tweets from a health care professional or organization.

Some tweets contained misinformation represented as facts, such as the unsubstantiated claim that IUDs can cause fertility issues. Others were outwardly misogynistic, shaming women and claiming that they wouldn’t be able to have kids because of using hormonal birth control.

One takeaway: “While Twitter may provide valuable insight, with more tweets being created by personal contraceptive users than official healthcare sources, the available information may vary in reliability. Asking patients about information from social media can help reaffirm to patients the importance of social networks in contraceptive decision-making while also addressing misconceptions to improve contraceptive counseling,” the authors write.

What Do Social Media Influencers Say About Birth Control? A Content Analysis of YouTube Vlogs About Birth Control
Emily J. Pfender and M. Marie Devlin. Health Communication, January 2023.

The study: To explore what social media influencers shared on YouTube about their experiences with hormonal and non-hormonal methods of birth control, the researchers analyzed 50 vlogs posted between December 2019 and December 2021. Most of the 50 influencers were categorized on YouTube as Lifestyle (72%) and Fitness (16%). They had between 20,000 and 2.2 million subscribers each.

The findings: In total, 74% of the influencers talked about discontinuing hormonal birth control. About 44% said the main reason they were discontinuing birth control was to be more natural, while 32% said they wanted to improve their mental health and 20% were concerned about weight gain.

Forty percent of influencers mentioned using non-hormonal birth control methods such as menstrual cycle tracking, condoms, non-hormonal IUDs and the pull-out method. Twenty percent reported switching from hormonal to non-hormonal methods.

One takeaway: “Our content analysis revealed that discontinuation of hormonal birth control is commonly discussed among [social media influencers] on YouTube and sexual health information from influencers might not provide accurate educational information and tools… this is especially concerning given that social media is young adults’ primary tool for sexual health information. Future research is needed to understand the effects of SMI birth control content on sexual health behaviors,” the authors write.

Hormonal Contraceptive Side Effects and Nonhormonal Alternatives on TikTok: A Content Analysis
Emily J. Pfender, Kate Tsiandoulas, Stephanie R. Morain and Leah R. Fowler. Health Promotion Practice, January 2024.

The study: The authors analyzed the content of 100 TikTok videos that used the hashtags #birthcontrolsideeffects and #nonhormonalcontraception. Their goal was to understand the types of content about side effects of hormonal and non-hormonal contraceptives on TikTok.

The findings: The videos averaged about 1 minute and garnered an average of 27,795 likes, 251 comments and 623 shares. For #birthcontrolsideeffects, 80% of the audience was 18 to 24 years old and videos with that hashtag had 43 million views worldwide as of July 7, 2023.

Thirty-two percent of the videos were by regular users (non-influencers), 26 by clinicians, 13% by health coaches and 2% by companies. Only 3% had a sponsorship disclosure and 6% included a medical disclaimer, that the person was not a doctor or was not providing medical advice.

Most of the 100 videos (71%) mentioned hormonal contraception. Among them 51% discussed unspecific hormonal contraceptives, 31% talked about the pill and 11% about hormonal IUDs. Four of the 71 creators explicitly recommended against using hormonal contraceptives.

Claims about hormonal contraceptives were mostly based on personal experience. About 25% of the creators cited no basis for their claims, 23% included outside evidence, including unspecified studies or information from the FDA insert, and 11% used a combination of personal and outside evidence.

Almost half (49%) mentioned discontinuing their hormonal contraception, with negative side effects cited as the most common reason.

The creators talked about mental health issues, weight gain, headaches, and less common risks of various cancers or chronic illness, change in personality and blood clots. They were less likely to mention the positive aspects of birth control.

About 52% of videos mentioned non-hormonal contraception, including copper IUDs and cycle tracking.

Nine of the 100 creators expressed feeling dismissed, pressured, gaslit or insufficiently informed about contraception by medical providers.

One takeaway: “Our findings support earlier work suggesting social media may fuel ‘hormonophobia,’ or negative framing and scaremongering about hormonal contraception and that this phobia is largely driven by claims of personal experience rather than scientific evidence,” the authors write. “Within these hashtag categories, TikTok creators frame their provider interactions negatively. Many indicate feeling ignored or upset after medical appointments, not sufficiently informed about contraceptive options, and pressured to use hormonal contraceptives. This finding aligns with previous social media research and among the general population, suggesting opportunities for improvements in contraceptive counseling.”

Popular Contraception Videos on TikTok: An Assessment of Content Topics
Rachel E. Stoddard, et al. Contraception, January 2024.

The study: Researchers analyzed 700 English-language TikTok videos related to hormonal contraception, with a total of 1.2 billion views and 1.5 million comments, posted between October 2019 and December 2021. Their aim was to explore the types of contraception content on TikTok and to understand how the platform influences the information patients take into birth control counseling visits.

The findings: More than half of the videos (52%) were about patient experiences and how to use contraceptives. Other common topics included side effects (35%) and pregnancy (39%).

Only 19% of the videos were created by health care professionals, including midwives, physician assistants and medical doctors, although those videos garnered 41% of the total views, indicating higher engagement. While 93% of health care providers shared educational content, 23% of non-health care providers shared educational content.

One takeaway: “Our findings show an exceptional opportunity for education around contraception for young reproductive-aged individuals, given the accessibility and popularity of these videos. This may also extend to other topics around sex education and family planning, including sexually transmitted infection prevention and treatment and procuring abortion care,” the authors write.

TikTok, #IUD, and User Experience With Intrauterine Devices Reported on Social Media
Jenny Wu, Esmé Trahair, Megan Happ and Jonas Swartz. Obstetrics & Gynecology, January 2023.

The study: Researchers used a web-scraping application to collect the top 100 TikTok videos tagged #IUD on April 6, 2022, based on views, comments, likes and shares. Their aim was to understand the perspectives and experiences of people with IUDs shared on TikTok. The videos had a total of 471 million views, 32 million likes and 1 million shares. Their average length was 33 seconds.

The findings: Some 89% of the creators identified as female and nearly 90% were from the United States; 37% were health care professionals; and 78% were 21 years or older.

Video types included patients’ own experiences with IUD removal (32%), educational (30%) and humorous (25%). More videos (38%) had a negative tone compared with 19% with a positive tone. The videos that portrayed negative user experiences emphasized pain and distrust of health care professionals.

Half of the videos were very accurate, while nearly a quarter were inaccurate (the authors did not use the term misinformation).

One takeaway: “The most liked #IUD videos on TikTok portray negative experiences related to pain and informed consent. Awareness of this content can help health care professionals shape education given the high prevalence of TikTok use among patients,” the authors write. “TikTok differs from other platforms because users primarily engage with an algorithmically curated feed individualized to the user’s interests and demographics.”

Types of female birth control

Most female hormonal contraceptives contain the synthetic version of natural female hormones estrogen and progesterone. They affect women’s hormone levels, preventing mature eggs from being released by the ovaries, a process that’s known as ovulation, hence, preventing a possible pregnancy.

Of the two hormones, progesterone (called progestin in synthetic form) is primarily responsible for preventing pregnancy. In addition to playing a role in preventing ovulation, progesterone inhibits sperm from penetrating through the cervix. Estrogen inhibits the development of follicles in the ovaries.

The information below is sourced from the CDC, the National Library of Medicine, the Cleveland Clinic and the Mayo Clinic.

Intrauterine contraception

Also called Long-Acting Reversible Contraception, or LARC, this method works by thickening the cervical mucus so the sperm can’t reach an egg. There are two types of IUDs: hormonal and non-hormonal.

  • Levonorgestrel intrauterine system is a T-shaped device that’s placed inside the uterus by a doctor. It releases a small amount of progestin daily to prevent pregnancy. It can stay in place for 3 to 8 years. Its failure rate is 0.1% to 0.4%.
  • Copper T intrauterine device is also T-shaped and is placed inside the uterus by a doctor. It does not contain hormones and can stay in place for up to 10 years. Its failure rate is 0.8%.
  • Side effects: Copper IUDs may cause more painful and heavy periods, while progestin IUDs may cause irregular bleeding. In the very rare cases of pregnancy while having an IUD, there’s a greater chance of an ectopic pregnancy, which is when a fertilized egg grows outside of the uterus.

Hormonal methods

  • The implant is a single, thin rod that’s inserted under the skin of the upper arm. It releases progestin over 3 years. Its failure rate is 0.1%, making it the most effective form of contraception available.
  • Side effects: The most common side effect of an implant is irregular bleeding.
  • The injection Depo-Provera or “shot” or “Depo” delivers progestin in the buttocks or arms every three months at the doctor’s office. Its failure rate is 4%.
  • Side effects: The shot may cause irregular bleeding. The shot is also the only contraceptive that may cause weight gain. It may also be more difficult to predict when fertility returns once the shot is stopped.
  • Combined oral contraceptives or “the pill” contain estrogen and progestin. They’re prescribed by a doctor. The pill has to be taken at the same time daily. The pill is not recommended for people who are older than 35 and smoke, have a history of blood clots or breast cancer. Its failure rate is 7%. Among women aged 15 to 44 who use contraception, about 25% use the pill.
  • The skin patch is worn on the lower abdomen, buttocks or upper body, releasing progestin and estrogen. It is prescribed by a doctor. A new patch is used once a week for three weeks. No patch is worn for the fourth week. Its failure rate is 7%.
  • Hormonal vaginal contraceptive ring releases progestin and estrogen. It’s placed inside the vagina. It is worn for three weeks and taken out on the fourth week. Its typical failure rate is 7%.
  • Side effects: Contraceptives with estrogen, including the pill, the patch and the ring, increase the risk of developing blood clots.
  • Progestin-only pill or “mini-pill” only has progestin and is prescribed by a doctor. It has to be taken daily at the same time. It may be a good option for women who can’t take estrogen. Its typical failure rate is 7%.
  • Opill is the first over-the-counter daily oral contraceptive in the U.S., approved by the Food and Drug Administration in 2023. Opill only has progestin and like other birth control pills, it has to be taken at the same time every day. It should not be used by those who have or have had breast cancer. Its failure rate is 7%.
  • Side effects: The most common side effect of progestin-only pills is irregular bleeding, although the bleeding tends to be light.

Non-hormonal birth control methods include using barriers such as a diaphragm or sponge, condoms and spermicides, withdrawal, and menstrual cycle tracking. Emergency contraception, including emergency contraception pills (the morning-after pill), is not a regular method of birth control.

Additional research studies to consider

Population Attitudes Toward Contraceptive Methods Over Time on a Social Media Platform
Allison A. Merz, et al. American Journal of Obstetrics & Gynecology, December 2020.

Social Media and the Intrauterine Device: A YouTube Content Analysis
Brian T. Nguyen and Allison J. Allen. BMJ Sexual and Reproductive Health, November 2017.

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Pandemic provisions reduced loss of Medicaid coverage for beneficiaries enrolled in both Medicaid and Medicare, study finds https://journalistsresource.org/home/dual-eligibles-medicaid-study/ Tue, 30 Apr 2024 17:05:09 +0000 https://journalistsresource.org/?p=78171 During the COVID-19 public health emergency, temporary policy changes significantly narrowed racial disparities in Medicaid coverage loss among dual-eligible beneficiaries.

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The loss of Medicaid coverage among Americans eligible for both Medicare and Medicaid — known as dual-eligible beneficiaries — was substantially reduced during the COVID public health emergency due to temporary policy changes, according to a study published in JAMA Network Open this month.

More importantly, those policy changes, which prohibited the states from disenrolling people from Medicaid, reduced and to some extent eliminated the pre-pandemic racial disparity in Medicaid coverage loss.

“Our study sheds light on the challenges that Medicaid enrollees generally faced in maintaining continuous Medicaid coverage prior to the [public health emergency], and the challenges that will likely re-emerge with the resumption of Medicaid redeterminations in 2023,” Dr. Yanlei Ma, the study’s lead author and a research associate at the Department of Health Policy and Management at the Harvard T.H. Chan School of Public Health, wrote in an email to The Journalist’s Resource.

The study, “Medicaid Eligibility Loss Among Dual-Eligible Beneficiaries Before and During COVID-19 Public Health Emergency,” analyzed national Medicare data from 2015 to 2020, tracking 56.2 million yearly records of beneficiaries who were eligible for both Medicare and Medicaid.

The authors focused on dual-eligible beneficiaries “because they represent a particularly vulnerable segment of the health care population, often facing complex health needs and socioeconomic challenges, which can complicate their access to necessary healthcare services,” Ma wrote. “Notably, dual-eligibles account for approximately one-third of spending in the Medicare and Medicaid programs despite representing only 20% of Medicare and 15% of Medicaid beneficiaries.”

About 12.5 million people in the U.S. are enrolled in both Medicare and Medicaid due to their age or disability and low income. This dual-eligible population mostly includes people with chronic conditions, physical disabilities, mental illness and cognitive impairments such as dementia and developmental disabilities.

Medicare is the federal health insurance program for people who are 65 years or older, certain younger people with disabilities and people with kidney failure requiring dialysis or a transplant. More than 65.7 million people are enrolled in Medicare.

Medicaid is a joint federal and state program that covers the health care costs of certain low-income individuals and families, qualified children and pregnant women, and people 65 years or older who are blind or disabled and have limited income. It’s also the main payer for long-term services. Medicaid is the largest source of health coverage in the U.S. with nearly 78 million enrollees.

For dual-eligible beneficiaries, Medicare pays first for the Medicare-covered services that are also covered by Medicaid. Medicaid covers services that Medicare does not cover, according to Medicaid.gov, which has a chart detailing what each program covers.

In 2020, 87% of dual-eligible beneficiaries had an income less than $20,000; 40% were under age 65; 49% were people of color; and 44% were in fair or poor health, according to a 2023 report by KFF, formerly the Kaiser Family Foundation.

While dual-eligible beneficiaries remain continuously enrolled in Medicare, many face the risk of losing Medicaid coverage each year due to various factors. These may include income fluctuations, changes in states’ Medicaid eligibility and, notably, administrative barriers, including onerous paperwork related to the Medicaid redetermination process, according to the study.

Before the pandemic, the proportion of beneficiaries who lost Medicaid for at least one month rose from 6.6% in 2015 to 7.3% in 2019, the study finds. Also, Black and Hispanic beneficiaries were more likely to lose Medicaid than their white peers, the authors find, highlighting that administrative barriers can disproportionately affect people of color.

Ma listed several reasons that contributed to the increasing rate of Medicaid loss between 2015 and 2019, including changes in the states’ eligibility criteria and budget pressures, which might have led some states to look for ways to reduce Medicaid enrollment as a cost-saving measure.

But those trends were reversed in 2020.

The proportion of dual-eligible beneficiaries who lost Medicaid for at least one month dropped to 2.3%, representing hundreds of thousands of individuals who retained their coverage, the study finds.

The study also finds more than half of dual-eligibles who lost Medicaid coverage during the study period subsequently regained their Medicaid coverage within one year.

“This suggests that the coverage losses are less likely due to sustained changes in eligibility but rather administrative factors,” Ma wrote in an e-mail. “Eligible individuals might lose Medicaid if they fail to receive, comprehend, or respond timely to notices or forms requesting additional information.”

Ma and co-authors warn that the end of the public health emergency in May 2023 — and with it, the return to regular Medicaid eligibility redeterminations — could lead to a resurgence of coverage losses. Ma noted that this concern applies to all Medicaid beneficiaries.

Starting in April 2023 states resumed the process of redetermining Medicaid eligibility, also known as “Medicaid unwinding,” which requires beneficiaries to complete paperwork and provide proof of continued eligibility.

As of April 18, at least 20.3 million Medicaid and CHIP (Children’s Health Insurance Program) beneficiaries across the country have been disenrolled from the program, according to KFF, which has been tracking Medicaid unwinding. That’s 22% of 94 million Medicaid and CHIP enrollment in March 2023, a month before Medicaid unwinding began.

“As states have resumed Medicaid redeterminations, there is a pressing need for policymakers to implement strategies to minimize Medicaid coverage losses, especially for the most vulnerable and minoritized populations,” Ma and co-authors write in the study.

They recommend that the Medicaid eligibility of dual-eligible beneficiaries be determined from data from other programs such as the Supplemental Nutrition Assistance Program. They also recommend allowing enrollees more time to respond to additional information requests, allocating more resources and personnel to process eligibility determinations, and providing enrollment materials that are accessible to people with limited English proficiency or disabilities such as vision impairment.

The authors plan to continue this research to document the disenrollment trends as states resume Medicaid redeterminations after the end of the public health emergency, Ma wrote.

Additional resources

  • Ma delves deeper into the special needs of dual-eligible beneficiaries in this 2023 Health Affairs podcast, including homelessness, lack of transportation or food insecurity.
  • A 2019 study published in Health Affairs finds that between 2012 and 2016, 18.2% of Medicare beneficiaries receiving full or partial Medicaid were disenrolled from the program “despite frequently continuing to receive full Part D subsidies whose income and asset eligibility criteria align closely with Medicaid’s.”
  • A 2019 policy brief by the U.S. Department of Health and Human Services finds that “states with more inclusive Medicaid eligibility coverage policies tend to have less coverage loss among new, full-dual [eligibles] than states with more restrictive Medicaid coverage.”
  • The policy journal Health Affairs is a good source of research studies on Medicaid, Medicare and dual-eligible beneficiaries.
  • The nonprofit, independent health policy research organization KFF is a good source of data on Medicare and Medicaid and dual-eligible enrollees, including this January 2023 report on the profile of dual-eligible enrollees.
  • Here’s an in-depth data book on dual-eligible beneficiaries, published in January 2024 by the Medicare Payment Advisory Commission (MedPAC) and the Medicaid and CHIP Payment and Access Commission (MACPAC).

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Report explores and recommends peer support networks for U.S. journalists facing online abuse https://journalistsresource.org/home/peer-support-networks-for-journalists-facing-online-abuse-pen-america/ Tue, 16 Apr 2024 15:51:50 +0000 https://journalistsresource.org/?p=78106 The PEN America report fills an important gap in knowledge about the existing structures of peer support networks inside and outside of the news industry and journalists’ general views and needs for peer support.

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In the face of increasing online harassment, an exploratory report published this month examines the role of peer support networks in reducing harm and increasing resilience among U.S. journalists, especially for women, journalists of color and LGBTQ+ journalists who are disproportionately targeted online.

The Power of Peer Support,” published by PEN America, calls on the journalism industry to invest in creating peer support groups, modeled after evidence-based approaches in other high-stress professions like emergency services, where journalists under attack online can come together and find support.

The authors make the case that under the current industry pressures and without sufficient support, journalists, especially those from diverse backgrounds, will leave the profession.

“I genuinely see this as something that as an industry, especially if we come together, we can make work for journalists and for news organizations,” says Susan E. McGregor, one of the report’s authors and a research scholar at Columbia University Data Science Institute and a former journalist.

The report fills an important gap in knowledge about the existing structures of peer support networks inside and outside of the news industry, effective models from outside the industry that could be adopted, and journalists’ general views and needs for peer support.

In addition to McGregor, the report’s authors are Viktorya Vilk, the director of digital safety and free expression at PEN America, who has been focused on digital safety and online abuse defense for more than six years, and Jeje Mohamed, senior manager of digital safety and free expression at PEN America, a nonprofit organization that champions free expression and the freedom to write. The Democracy Fund and Craig Newmark Philanthropies funded the report.

The report is not published in a peer-reviewed academic journal, but the research behind it was approved by Columbia University’s Institutional Review Board. It is based on interviews with eight journalists of color and 17 support network organizers, newsroom leaders, and experts in peer support, mental health, HR and security, between March 2022 and June 2023.

Even though the authors interviewed eight journalists, they were able to gain a broader of view of journalists’ experience via peer support network organizers who have worked with many journalists in their groups.

The report’s findings aren’t generalizable to all journalists who have experienced online abuse, the authors note.

Despite its limitations, the report is a deep dive into peer support in journalism, says Matthew Pearson, an assistant professor at Carleton University’s School of Journalism and Communication in Ottawa, Canada, who researches mental health, well-being and trauma among media workers and was not involved in the report.

“I appreciate how [the report] connects peer support to the consequences of online abuse, but I also really appreciate that it makes a link between online abuse and how that abuse impacts the very people that we’re trying to get and retain and promote in U.S. organizations,” Pearson says, referring to women, people of color and people from diverse backgrounds.

Scott Blanchard, an editor and director of journalism at WITF in Pennsylvania, who has extensive experience in bringing peer support and trauma awareness to local newsrooms, said in an email that the paper “is the first report I’ve seen to drill down this specifically on peer support for journalists, and the first I’ve seen to draw conclusions and make recommendations.”

The report comes at a crucial election year in the U.S. and at a time when journalists, particularly women, journalists of color and LGBTQ+ journalists, face increasing levels of online abuse and harassment.

A 2022 Pew Research Center study of 11,889 U.S.-based journalists finds that 27% of Black journalists, 20% of Hispanic journalists and 27% of Asian journalists experienced online abuse based on their race or ethnicity, compared with 5% of white journalists surveyed.

Many times journalists under attack don’t know where to turn or don’t have a place to turn to, leaving them feeling alone and isolated.

“If you look at the literature, social isolation is extremely, extremely bad for one’s health, particularly if you’re going through these kinds of high-stress experiences,” says McGregor.

Peer support and small-group peer support in journalism

The authors of the report define peer support as emotional and psychological support provided outside of a clinical setting.

Research shows that certain kinds of support, including peer support, can be more effective at promoting resilience than working with a new therapist, the authors note, although it’s not a replacement for therapy.

“We explored all kinds of support networks,” Vilk says. “Not all of the support networks that we found were peer support, and they were all extremely different from one another, and they did very different things,” such as anonymous hotlines that people can call, online chat groups, mentorship programs in professional associations, or in-person programs.

In their search for the types of support networks for journalists, the authors find two main types of programs:

  • “Structured” networks, which were created with a specific mission, such as professional development or providing emergency response services.
  • “Organic” networks, originating in communities such as alumni of a given training or fellowship program, or among journalists who share a beat.

But while many journalists are proponents of peer support networks, and prefer to receive support from other journalists, many don’t reach out to the existing ones when facing online harassment or other job stressors.

The authors find several reasons driving this disconnect. Some journalists are concerned that the details of their experiences or their feelings might find their way to an employer, potential employer or future collaborator. Others might find it difficult to be vulnerable without knowing how their experiences in a group might be received or responded to.

The authors believe that another model called small-group peer support, could be the solution.

The model currently doesn’t exist in the news industry, according to the authors, but it is beneficial in other high-stress professions, research shows.

In the small-group peer support model, a trained individual facilitates a group of four to ten peers in providing support to one another. The facilitators don’t necessarily share the experiences of the group and they don’t provide direct support to the group’s members.

“The small-group peer support model is built on norms and expectations defined and maintained by the individuals in the group, with support from trained facilitators who can offer guidance and direction as needed,” the authors write. “In the examples we’ve studied, small-group peer support operated in ‘real time’ (e.g. in-person meeting or online call), so participants could be confident that, when sharing, they would get a response.”

In the authors’ view, this model will likely work better for journalists if members are also given anonymity and confidentiality, It can also be a more inclusive space for freelance journalists who often lack support from news organizations, they say.

“Many initiatives that being in the newsroom begin with full-time, permanent employees in mind, or even employees who are on contract, and don’t necessarily consider freelancers,” Pearson of Carleton University says. “So I’m glad that this includes freelancers.”

The report suggests that professional associations, foundations, universities, unions, philanthropists or news organizations could spearhead the effort to develop networks, recruit peer support facilitators, coordinate training, help with finances, and help connect journalists with these groups.

“I would love to see as many organizations in the journalism industry as possible experiment with this model because small-group peer support has not been done in any kind of deliberate, structured, thoughtful way in the journalism industry that we were able to find,” Vilk says.

Blanchard of WITF is in support of the model but he’s also skeptical about how quickly and widely it could be adopted across the industry.

“I think there’s also a catch-22 here: Journalists and newsrooms are so stretched and stressed that they may not have the time and energy it would take to create a way to address how stretched and stressed they are,” Blanchard said. “That’s why the idea of philanthropic money could play a huge role in pushing this issue forward across the industry, including the model recommended by the report.”

Other findings in the report

The professional journalists interviewed for the report were based in the U.S., with staff and freelance experience on a range of beats and from two to 20 years in the field.

The authors recruited participants who identified as journalists of color, given the disproportionate impact of online harassment on them.

“We wanted to explicitly understand what kind of peer support exists for folks who are disproportionately targeted based on their identity,” Vilk says.

Six of the eight journalists identified as women, one as a man and one as nonbinary. The journalists worked at various mediums, including print, online and audio.

Even though the journalists interviewed described support networks as “safe spaces” that sometimes even took on a “familial” quality, “they said that they did not — or would not — turn to these networks when experiencing online harassment,” the authors write.

They also find that existing support networks mostly address either immediate distress — such as an active doxing campaign or threat of legal action — or career-level concerns, such as negotiating a raise. This leaves out journalists who experience ongoing distress such as online abuse.

The majority of support networks for journalists in the U.S. operate outside of news organizations, according to the report. However, they found four news organizations that ran in-house peer support networks or had explored the option.

In the in-house model, news organizations provide financial and logistics support to networks. Employees serve as peer support providers and an external clinician supervises the network. Although there are many benefits to this model, its exclusive nature to the newsroom makes it inaccessible to freelancers. Also, the expense of working with a clinical provider makes it infeasible for newsrooms with limited resources, the authors write.

When asked what they wanted from news organizations, most journalists in the report said they wanted their news organizations to “directly and explicitly acknowledge the occupational hazards of journalism, including online abuse, and to provide basic resources for coping with them constructively,” the authors write.

They also wanted news organizations to develop policies and procedures for online abuse, so that journalists know what to expect from their news organization, and said that employee assistance programs (EAPs) are not enough.

“I don’t think the journalism industry has fully come around to the idea the profession involves an enormous amount of stress and trauma and occupational hazard, the way that it is understood if you’re talking about first responders or other kinds of fields,” Vilk says.

Report’s recommendations for setting a peer support network

They offer several recommendations to news organizations and the wider journalism industry:

Strengthen existing organic or structured support networks. Some ways to do so include:

  • Creating a “staffed” channel focused on online abuse, and recruiting and training members who can serve as support providers and offer specific hours of availability.
  • Offering members training opportunities, such as psychological first aid; considering a compensation or recognition model for the trained support providers.
  • Allowing support providers to take breaks from their duties to prevent burnout.
  • Providing members with existing anti-abuse resources.
  • And, importantly, emphasizing confidentiality and anonymity.

Build an in-house structured support network:

  1. Set aside an hour or two per month during work hours for participants to connect and complete a support training program like psychological first aid.
    1. Get buy-in with the news organization’s leadership and potential participants. One way is to work with a trusted facilitator from inside or outside the news organization to collect anonymized staff experiences with online abuse and their desired interventions. This information can then help show the need.
    1. Assess your budget. “Think realistically about how your organization can provide support immediately, in terms of training time, administrative overhead, professional development, and other direct costs,” the authors write. Also, think about the cost of losing a staffer due to burnout.
    1. Connect with other organizations that have implemented peer support networks.
    1. Communicate within the organization consistently that the news organization wants to be more effective in supporting journalists experiencing online abuse and other job stressors, and that it has developed a support network where journalists can confidentially discuss their issues.

Adapt the small-group peer support model.

One example is peer support at Whitman-Walker Health, a nonprofit clinic in Washington, D.C., serving the local LGBTQ+ community. The clinic has been offering small-group peer support groups to the local LGBTQ+ community for many years.

A new group usually begins after the peer support coordinator identifies six to eight people interested in exploring a theme — such as the “Silver Circle” for LGBTQ+ seniors — and connects them with pairs of trained peer support facilitators, who help guide group conversations.

The groups are largely independent. Some have met consistently for years and some meet for just a few months.

Whitman-Walker peer support facilitators go through an application process and a nine-hour training. They also participate in sessions with more experienced supervisors. The typical time commitment of a peer support facilitator is four to five hours per month.

The organization suggested that journalists can form small-group peer support around beats, identities or locations.

“What you might say is, ‘Let’s have a six-session or eight-session group about dealing with small towns, or what’s it like being in a small town and knowing everybody?’ Or, ‘What’s it like being a woman of color [in journalism]?’” Whitman-Walker officials told the authors.

McGregor is now researching whether and how the small-group peer support model might work in the journalism community.

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How they did it: A reporting team led by Pittsburgh Post-Gazette and ProPublica exposes dangerous defect in popular breathing machine https://journalistsresource.org/home/how-they-did-it-pittsburgh-post-gazette-and-propublica-philips-breathing-machines/ Mon, 25 Mar 2024 13:11:00 +0000 https://journalistsresource.org/?p=77848 The reporters share 11 tips for covering science and the medical device industry.

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In the summer of 2022, Michael Sallah, the deputy managing editor of investigations at the Pittsburgh Post-Gazette, received an email from a source who encouraged him to look at personal injury lawsuits filed in federal court in Pittsburgh. The lawsuits involved Phillips Respironics, one of the leading makers of breathing machines, including ventilators and sleep apnea machines.

The source also sent him a Food and Drug Administration inspection report of one of the Philips factories that made the breathing machines, located on the outskirts of Pittsburgh.

“As we started to dig in and look, it was pretty horrifying stuff that we were coming up with,” Sallah says.

Through a monthslong investigation, the reporting team, which also included ProPublica, Mediahuis NRC in Amsterdam and Northwestern University’s Medill Investigative Lab, discovered that patients who were using Philips breathing machines, including sleep apnea machines, also called CPAP machines, were dying and the scale of the crisis was far greater than the public knew.

The foam in the Philips breathing machines was breaking down in heat and humidity, sending toxic fumes and small particles into the lungs of vulnerable patients, including infants, older adults, pregnant women and veterans, the investigation revealed.

 “This is going right into your nose, your mouth, your sinuses down to your esophagus, into your respiratory system and lungs,” says ProPublica investigative reporter Debbie Cenziper

The reporting also revealed that Philips had known about the defective machines since 2010 and didn’t alert the public. Neither did the FDA, which had received warnings about contaminants in the machines.

And in 2021, when the company recalled its popular DreamStation breathing machines, it sent out replacement parts that continued to release cancer-causing chemicals, the investigation revealed.

The reporters also found:

  • Philips continued to aggressively market the machines while its own experts warned of the dangers the devices were posing to patients.
  • Philips failed to turn over more than 3,700 complaints about the eventually-recalled machines, sometimes waiting years before submitting them to the FDA. The FDA requires companies to disclose patient complaints to the agency within 30 days.
  • Other leading device makers also submitted late reports about patient complaints involving flawed pacemakers, prosthetics, dialysis machines and screws and plates for bones. In 2023, 1 in 8 reports from medical device companies, including more than 232,000 complaints, were submitted to the FDA past the 30-day deadline.

As a result of the investigation:

  • The Government Accountability Office is launching an investigation of the FDA’s oversight of medical devices. It’s the first in a decade. Sens. Richard Blumenthal (D-CT) and Dick Durbin (D-IL) asked the GAO to investigate how the FDA tracks warnings about dangerous devices, oversees recalls and takes actions against companies.
  • Rep. Jan Schakowsky (D-IL), the ranking member of the House Energy and Commerce subcommittee that oversees consumer product safety, also called for investigations.
  • Connecticut’s Attorney General William Tong called for third-party experts to conduct safety tests on recalled machines.
  • Philips Respironics announced in January that it was going to stop manufacturing and selling all CPAP machines in the United States.

The reporting team included Sallah, Michael Korsh and Evan Robinson-Johnson from Post-Gazette; Cenziper from ProPublica; and Monica Sager from Northwestern University.

In an interview, Sallah and Cenziper, both Pulitzer Prize winners, share these 11 reporting tips for journalists.

1. To strengthen a reporting project, collaborate with other newsrooms.

After Sallah began looking into the lawsuits in federal court, he reached out to long-time reporting colleague Cenziper to pitch a collaboration. The two had worked together at the Miami Herald and later at The Washington Post and had been wanting to find a collaborative project. This seemed to be the one.

Pittsburgh was ground zero for Philips because it’s where the company manufactured the breathing machines. Meanwhile, ProPublica journalists had a lot of experience writing about the FDA.

“We all bring different strengths, skills and resources to the table,” says Cenziper.

They also collaborated with Mediahuis NRC in Amsterdam, which helped provide sources there at the headquarters for Philips’ parent company, Royal Phillips. They also worked with Northwestern University’s Medill Investigative Lab, where student journalists helped comb through more than 100,000 patient complaints involving Philips breathing machines, filed in FDA’s tracking system since 2010.

2. Collaborate with student journalists.

Cenziper is also a professor at the Medill School of Journalism at Northwestern University and the director of the Medill Investigative Lab. Sallah is a media fellow at the lab.

Cenziper had been working with Medill student journalists for several years on different investigative projects at The Washington Post and ProPublica.

“And both organizations have embraced their work because young journalists bring fresh eyes, fresh perspective, passion and grit to the table,” Cenziper says.

In this case, students helped dig into the data and documents and sit down with families across the country, willing to share their experiences with the breathing machines.

The students were also savvy at mining social media, which helped in finding patients affected by the defective devices.

3. Share information to gain patients’ trust.

The reporters wanted to humanize the stories and they had to get the patients to trust them.

“We’re asking people to basically lead us to their bedrooms, where these breathing machines are set up,” Cenziper says.

So they shared with patients some of the information they had discovered in the FDA reports.

“These folks were living in a vacuum,” Sallah says.

There was very little information available to them to know and understand what the crisis involved. Some had been kept the dark by the company and the FDA for years.

“Debbie and I were able to approach them and offer them a bit more [information] and give them a little sense of guidance so they can navigate things, and in return, some of them were very grateful and seemed to open up more, the more we could share with them,” Sallah says.

“I also think it was in some ways therapeutic for some of the people to share their stories with us,” Cenziper adds. “We sat in so many living rooms — I don’t mean for a quick hour interview; I mean half a day or more — just talking to people and listening to people and looking at their family photos and reading their medical records.”

4. Take the time to gain the trust of internal sources.

It took the reporters many months to get the company scientists to talk. The scientists were hesitant because talking to the press could risk their jobs and reputations and potentially made them vulnerable to libel or defamation lawsuits.

But the reporting team kept calling until one day one scientist agreed to talk, explaining the complexity of the science behind the defective machines and how dangerous the chemicals were to humans.

“I’ve been doing this for 30 years and I still believe that people at the end of the day want to do the right thing,” says Cenziper. “And at the end of the day, our sources believed this company kept a very dangerous secret and that someone needed to provide answers. Someone needed to have to provide transparency.”

The reporters consulted with their editors and lawyers and agreed to protect the identities of their internal sources.

5. Understand the science. Really.

Mastering the data and understanding the science helps you write with authority, Sallah says.

It took the reporters months to understand the complicated science behind volatile organic compounds released from the defective sleep apnea machines.

“It’s really up to you to understand everything. Everything,” Sallah says. “And that meant science, it meant the mechanics as much as we could so that there were no gaps.”

They were meticulous in understanding the toxicology.

“We were primed and briefed over and over about these concepts until we finally absorbed them and understood them,” Sallah says.

When they were talking to experts, they’d ask the basic questions.

“We’d say, ‘Look, this is going to sound like a dumb question, but…’” Sallah says. “And they never took it that way. They were so appreciative of us taking the time to learn this that they made it as basic, as comprehensive, as accurate as they could be.”

6. Find several experts to guide you.

It took many phone calls to find the scientists who were willing to read the FDA reports, take the time to interpret them and weigh in on something that they hadn’t been a part of.

But getting experts was a necessary part of the reporting process.

“When you’re writing about science, always find a guru who can guide you through it,” Cenziper advises.

And rely on more than one expert.

“We didn’t want just one toxicologist. We had three to five,” she says.

When Philips tried to downplay the toxicity of various chemicals, the reporters kept talking with scientists to understand the science and how the machines worked. They eventually realized that there was one thing the company couldn’t reconcile: The chemical cocktail released by the breathing machines triggered what’s known as genotoxicity, which means it can mutate human cells and lead to cancer.

“We reached that point through a lot of our own inquiry into where this finally ends and that’s something [the company] couldn’t dispute,” Sallah says. “You don’t want a ‘he said, she said’ [story]. You want to be able to give the reader some finality and that was one of our quests.”

7. You’ve heard it before, but here it is again: Avoid acronyms and jargon.

Sleep apnea machines are also known as CPAP machines, which stands for continuous positive airway pressure machines. They use mild air pressure to keep breathing airways open while patients sleep.

The reporters didn’t introduce the word CPAP until several paragraphs into their first story. At the beginning and throughout they mostly used “breathing machines” and “sleep apnea machines.”

“We worked very hard at trying to make [the stories] as conversational as we could,” Sallah says. “You’re not writing some sort of a dissertation on the ways in which these machines work. You have to make it interesting. So the ways in which these machines operate have to kind of be woven into the story in a way where it’s still a narrative.”

“I always tell young journalists it doesn’t matter how great your findings are. It doesn’t matter if you’re going to bring down a president,” Cenziper adds. “None of that matters if people stop reading what you wrote.”

8. Don’t settle for long wait periods for your public records (FOIA) requests.

The reporters asked the FDA for documents related to the 2021 Philips breathing machines recall and the health hazards posed by the machines, including internal emails and Philips monthly status reports. When the FDA said it would need more than two years to provide the records, lawyers for ProPublica and Post-Gazette sued the FDA in federal court in New York. Their lawsuit was successful.

“Transparency in this case is a matter of significant and urgent public concern,” Sarah Matthews, ProPublica’s deputy general counsel, said in a statement shared by the news organizations in their Goldsmith application. “These records will shed light on the recall of Philips ventilators and other breathing devices that have put the health of millions of Americans in jeopardy.”

The FDA agreed to turn over the records in batches, which continues to date.

“Our very last story was based entirely on records that we received through FOIA,” Cenziper says.

9. Read the documents. Don’t settle for numbers.

The reporters had a massive data challenge because they were looking at thousands of complaints in an FDA database that was difficult to navigate and manipulate. They eventually paid for a subscription to a proprietary database of the reports, which was more manageable.

But, in addition to getting a sense of the scope of the problem, they began to read the complaints.

“Numbers are just numbers,” Cenziper says. “You need to understand what goes into the data.”

By reading the complaints, the reporters spotted patterns of failure by the FDA.

“If I had a recommendation for other journalists, it would be, look at what’s going into the data. Take the time to read documents,” Cenziper says. “Don’t just publish summary numbers.”

10. When covering medical devices, understand the role of regulators.

The FDA has made a lot of progress in overseeing pharmaceuticals, but its process is different for medical devices. The FDA mostly leaves it up to the medical device industry to regulate itself, the reporters explain.

“And that can be dangerous because the guinea pigs are the patients, the people, who are out there, who need these devices and it can take years of deaths and injuries before they finally figure out this device is hurting people,” Sallah says.

Take the time to understand the role of government regulators and the history of gaps and weaknesses in their oversight, he advises.

“It’s not just going to be the devices themselves that break down, but it’s also how long it takes for the government to respond and to take action despite all the enforcement tools it has at its disposal,” Sallah says.

11. Keep a timeline.

One of the reporters’ organizing tips is to create a timeline, especially for large investigative projects.

“We did a very big 40-some page timeline with hyperlinks,” Cenziper says. “That not only helped us get our thoughts together and our lede and nutgraf, but also helped us organize the stories.”

“That was the single most important document that we created,” Sallah says of the shared document.

They also published a timeline of the events, starting from when the breathing machines arrived in the market. 

Read the stories

With Every Breath: Millions of breathing machines, one dangerous defect

Portraits of Pain

A Failure to Protect: Millions of people used tainted breathing machines. The FDA failed to use its power to shield them.

Millions of People Used Tainted Breathing Machines. The FDA Failed to Use Its Power to Protect Them.

Senators call for probe into FDA’s oversight of medical devices, citing series on Philips CPAP recall

Philips Recalled Breathing Machines in 2021. Chemicals of “Concern” Found in Replacement Machines Raised New Alarm.

Video: “With Every Breath” Captures the Human Toll of Philips’ Failure to Disclose Dangerous Defects of Its CPAP Devices

Timeline: Inside Philips, an unfolding crisis

Follow the latest news.

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How they did it: STAT reporters expose how ailing seniors suffer when Medicare Advantage plans use algorithms to deny care https://journalistsresource.org/home/how-they-did-it-stat-reporters-expose-medicare-advantage-algorithm/ Mon, 18 Mar 2024 13:07:00 +0000 https://journalistsresource.org/?p=77744 STAT reporters Bob Herman and Casey Ross share eight reporting tips based on their four-part investigative series, which revealed that health insurance companies used a flawed computer algorithm and secret internal rules to improperly deny or limit rehab care for seriously ill older and disabled patients.

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In a call with a long-time source, what stood out most to STAT reporters Bob Herman and Casey Ross was just how viscerally frustrated and angry the source was about an algorithm used by insurance companies to decide how long patients should stay in a nursing home or rehab facility before being sent home.­

“The level of anger and discontent was a real signal here,” says Ross, STAT’s national technology correspondent. “The other part of it was a total lack of transparency” on how the algorithm worked.

The reporters’ monthslong investigation would result in a four-part series revealing that health insurance companies, including UnitedHealth Group, the nation’s largest health insurer, used a flawed computer algorithm and secret internal rules to improperly deny or limit rehab care for seriously ill older and disabled patients, overriding the advice of their own doctors. The investigation also showed that the federal government had failed to rein in those artificial-intelligence-fueled practices.

The STAT stories had a far-reaching impact:

  • The U.S. Senate Committee on Homeland Security and Government Affairs took a rare step of launching a formal investigation into the use of algorithms by the country’s three largest Medicare Advantage insurers.
  • Thirty-two House members urged the Centers for Medicare and Medicaid Services to increase the oversight of algorithms that health insurers use to make coverage decisions.
  • In a rare step, CMS launched its own investigation into UnitedHealth. It also stiffened its regulations on the use of proprietary algorithms and introduced plans to audit denials across Medicare Advantage plans in 2024.
  • Based on STAT’s reporting, Medicare Advantage beneficiaries filed two class-action lawsuits against UnitedHealth and its NaviHealth subsidiary, the maker of the algorithm, and against Humana, another major health insurance company that was also using the algorithm. 
  • Amid scrutiny, UnitedHealth renamed NaviHealth.

The companies never allowed an on-the-record interview with their executives, but they acknowledged that STAT’s reporting was true, according to the news organization.

Ross and Herman spoke with The Journalist’s Resource about their project and shared the following eight tips.

1. Search public comments on proposed federal rules to find sources.

Herman and Ross knew that the Centers for Medicare and Medicaid Services had put out a request for public comments, asking stakeholders within the Medicare Advantage industry how the system could improve.

There are two main ways to get Medicare coverage: original Medicare, which is a fee-for-service health plan, and Medicare Advantage, which is a type of Medicare health plan offered by private insurance companies that contract with Medicare. Medicare Advantage plans have increasingly become popular in recent years.

Under the Social Security Act, the public has the opportunity to submit comments on Medicare’s proposed national coverage determinations. CMS uses public comments to inform its proposed and final decisions. It responds in detail to all public comments when issuing a final decision.

The reporters began combing through hundreds of public comments attached to a proposed Medicare Advantage rule that was undergoing federal review. NaviHealth, the UnitedHealth subsidiary and the maker of the algorithm, came up in many of the comments, which include the submitters’ information.

“These are screaming all-caps comments to federal regulators about YOU NEED TO SOMETHING ABOUT THIS BECAUSE IT’S DISGUSTING,” Ross says.

“The federal government is proposing rules and regulations all the time,” adds Herman, STAT’s business of health care reporter. “If someone’s going to take the time and effort to comment on them, they must have at least some knowledge of what’s going on. It’s just a great tool for any journalist to use to figure out more and who to contact.”

The reporters also found several attorneys who had complained in the comments. They began reaching out to them, eventually gaining access to confidential documents and intermediaries who put them in touch with patients to show the human impact of the algorithm.

2. Harness the power of the reader submission box.

At the suggestion of an editor, the reporters added a reader submission box at the bottom of their first story, asking them to share their own experiences with Medicare Advantage denials.

The floodgates opened. Hundreds of submissions arrived.

By the end of their first story, Herman and Ross had confidential records and some patients, but they had no internal sources in the companies they were investigating, including Navihealth. The submission box led them to their first internal source.

(Screenshot of STAT’s submission box.)

The journalists also combed through LinkedIn and reached out to former and current employees, but the response rate was much lower than what they received via the submission box.

The submission box “is just right there,” Herman says. “People who would want to reach out to us can do it right then and there after they read the story and it’s fresh in their minds.”

3. Mine podcasts relevant to your story.

The reporters weren’t sure if they could get interviews with some of the key figures in the story, including Tom Scully, the former head of the Centers for Medicare and Medicaid Services who drew up the initial plans for NaviHealth years before UnitedHealth acquired it.

But Herman and another colleague had written previously about Scully’s private equity firm and they had found a podcast where he talked about his work. So Herman went back to the podcast — where he discovered Scully had also discussed NaviHealth.

The reporters also used the podcast to get Scully on the phone for an interview.

“So we knew we had a good jumping off point there to be like, ‘OK, you’ve talked about NaviHealth on a podcast, let’s talk about this,’” Herman says. “I think that helped make him more willing to speak with us.”

4. When covering AI initiatives, proceed with caution.

“A source of mine once said to me, ‘AI is not magic,’” Ross says. “People need to just ask questions about it because AI has this aura about it that it’s objective, that it’s accurate, that it’s unquestionable, that it never fails. And that is not true.”

AI is not a neutral, objective machine, Ross says. “It’s based on data that’s fed into it and people need to ask questions about that data.”

He suggests several questions to ask about the data behind AI tools:

  • Where does the data come from?
  • Who does it represent?
  • How is this tool being applied?
  • Do the people to whom the tool is being applied match the data on which it was trained? “If racial groups or genders or age of economic situations are not adequately represented in the training set, then there can be an awful lot of bias in the output of the tool and how it’s applied,” Ross says.
  • How is the tool applied within the institution? Are people being forced to forsake their judgment and their own ability to do their jobs to follow the algorithm?

5. Localize the story.

More than half of all Medicare beneficiaries have Medicare Advantage and there’s a high likelihood that there are multiple Medicare Advantage plans in every county across the nation.

“So it’s worth looking to see how Medicare Advantage plans are growing in your area,” Herman says.

Finding out about AI use will most likely rely on shoe-leather reporting of speaking with providers, nursing homes and rehab facilities, attorneys and patients in your community, he says. Another source is home health agencies, which may be caring for patients who were kicked out of nursing homes and rehab facilities too soon because of a decision by an algorithm.

The anecdote that opens their first story involves a small regional health insurer in Wisconsin, which was using NaviHealth and a contractor to manage post-acute care services, Ross says.

“It’s happening to people in small communities who have no idea that this insurer they’ve signed up with is using this tool made by this other company that operates nationally,” Ross says.

There are also plenty of other companies like NaviHealth that are being used by Medicare Advantage plans, Herman says. “So it’s understanding which Medicare Advantage plans are being sold in your area and then which post-acute management companies they’re using,” he adds.

Some regional insurers have online documents that show which contractors they use to evaluate post-acute care services.

6. Get familiar with Medicare’s appeals databases

Medicare beneficiaries can contest Medicare Advantage denials through a five-stage process, which can last months to years. The appeals can be filed via the Office of Medicare Hearings and Appeals.

“Between 2020 and 2022, the number of appeals filed to contest Medicare Advantage denials shot up 58%, with nearly 150,000 requests to review a denial filed in 2022, according to a federal database,” Ross and Herman write in their first story. “Federal records show most denials for skilled nursing care are eventually overturned, either by the plan itself or an independent body that adjudicates Medicare appeals.”

There are several sources to find appeals data. Be mindful that the cases themselves are not public to protect patient privacy, but you can find the number of appeals filed and the rationale for decisions.

CMS has two quality improvement organizations, or QIOs, Livanta and Kepro, which are required to file free, publicly-available annual reports, about the cases they handle, Ross says.

Another company, Maximus, a Quality Improvement Contractor, also files reports on prior authorization cases it adjudicates for Medicare. The free annual reports include data on raw numbers of cases and basic information about the percentage denials either overturned or upheld on appeal, Ross explains.

CMS also maintains its own database on appeals for Medicare Part C (Medicare Advantage plans) and Part D, which covers prescription drugs, although the data is not complete, Ross explains.

7. Give your editor regular updates.

“Sprinkle the breadcrumbs in front of your editors,” Ross says.

“If you wrap your editors in the process, you’re more likely to be able to get to the end of [the story] before they say, ‘That’s it! Give me your copy,’” Ross says.

8. Get that first story out.

“You don’t have to know everything before you write that first story,” Ross says. “Because with that first story, if it has credibility and it resonates with people, sources will come forward and sources will continue to come forward.”

Read the stories

Denied by AI: How Medicare Advantage plans use algorithms to cut off care for seniors in need

How UnitedHealth’s acquisition of a popular Medicare Advantage algorithm sparked internal dissent over denied care

UnitedHealth pushed employees to follow an algorithm to cut off Medicare patients’ rehab care

UnitedHealth used secret rules to restrict rehab care for seriously ill Medicare Advantage patients

The post How they did it: STAT reporters expose how ailing seniors suffer when Medicare Advantage plans use algorithms to deny care appeared first on The Journalist's Resource.

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Reporting on psychedelics research or legislation? Proceed with caution https://journalistsresource.org/home/psychedelics-research-roundup/ Tue, 27 Feb 2024 22:27:53 +0000 https://journalistsresource.org/?p=77627 Despite the hype, optimism and legislation involving the therapeutic potential of psychedelics, researchers warn that there's much we don't know. This research roundup looks at some of the knowns and unknowns of psilocybin, MDMA and other hallucinogens.

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More cities and states are introducing bills to decriminalize and regulate access to psychedelic drugs, which could potentially become another option to treat mental health conditions and substance use disorders. But the substances remain illegal under U.S. federal law and scientific evidence about their effectiveness is still far from conclusive.

This month alone, California lawmakers introduced a bill to allow people 21 and older to consume psychedelic mushrooms under medical supervision. In Massachusetts, lawmakers are working on a bill that would legalize psilocybin, the active ingredient of psychedelic mushrooms. And Arizona legislators have also introduced a bill that would make psychedelic mushrooms available as a mental health treatment option.

Last December, Congress passed legislation that included funding for psychedelic clinical trials for active-duty service members. And in January this year, the Department of Veterans Affairs announced that it will begin funding research on MDMA, also known as ecstasy, and psilocybin, to treat veterans with post-traumatic stress disorder and depression. This is the first time since the 1960s that the VA is funding research on such compounds, according to the department.

The rise of proposed and passed legislation in recent years necessitates more journalistic coverage. But it’s important for journalists to go beyond what the bills and lawmakers say and include research studies about psychedelics and note the limitations of those studies.

Major medical organizations, including the American Psychiatric Association, have not yet endorsed psychedelics to treat psychiatric disorders, except in clinical trials, due to inadequate scientific evidence.

The authors of a 2023 study published in the journal Therapeutic Advances in Psychopharmacology, also advise “strong caution” regarding the hype around the potential medical use of psychedelics. “There is not enough robust evidence to draw any firm conclusions about the safety and efficacy of psychedelic therapy,” they write.

Scientists are still trying to better understand how psychedelics work, what’s the best dose for treating different mental health conditions and how to reduce the risk of potential side effects such as intense emotional experiences or increased heart rate and blood pressure, the authors of a February 2024 study published in the journal Progress in Neuro-Psychopharmacology and Biological Psychiatry write.

In a 2022 study published in JAMA Psychiatry, Dr. Joshua Siegel and his colleagues at Washington University in St. Louis write that while legislative reform for psychedelic drugs is moving forward rapidly, several issues have not been addressed, including:

  • A mechanism for verifying the chemical content of drugs that are obtained from outside the medical establishment.
  • Licensure and training criteria for practitioners who wish to provide psychedelic treatment.
  • Clinical and billing infrastructure.
  • Assessing potential interactions with other drugs.
  • How the drugs should be used in populations such as youths, older adults and pregnant people.

“Despite the relative rapidity with which some have embraced psychedelics as legitimate medical treatments, critical questions about the mechanism of action, dose and dose frequency, durability of response to repeated treatments, drug-drug interactions, and the role that psychotherapy plays in therapeutic efficacy remain unanswered,” Siegel and colleagues write.

What are psychedelics?

Psychedelics are among the oldest class of mind-altering substances, used by humans for thousands of years in traditional or religious rituals.

In 2021, 74 million people 12 years and older reported using hallucinogens, according to the National Survey on Drug Use and Health.

The terms “psychedelics” and “hallucinogens” are used interchangeably in public discourse, but scientifically, hallucinogens fall into three groups based on chemical structure and mechanism of action, according to NIH’s National Institute on Drug Abuse:

  • Psychedelic drugs, also called “classic psychedelics” or simply “psychedelics,” mainly affect the way the brain processes serotonin, a chemical that carries messages between nerve cells in the brain and the body. These drugs can bring on vivid visions and affect a person’s sense of self, according to NIDA. Drugs in this category include:
    • Psilocybin is the active ingredient in psychedelic mushrooms, also known as “magic” mushrooms or shrooms. It’s a Schedule 1 drug in the U.S. under the Controlled Substances Act, which means it has a high potential for abuse and has no accepted medical use. However, some states have decriminalized it, according to NIDA. The drug has also been given the Breakthrough Therapy designation from the FDA, a process to speed up the development and review of drugs, for the treatment of major depressive disorder.
    • LSD, or lysergic acid diethylamide, is a synthetic chemical made from a fungus that infects rye. It’s a Schedule 1 drug.
    • DMT, or dimethyltryptamine, found in certain plants native to the Amazon rainforest, has been used in religious practices and rituals. The plants are sometimes used to make a tea called ayahuasca. DMT can also be made in the lab as a white powder. DMT is generally smoked or consumed in brews like ayahuasca. It’s a Schedule 1 drug.
    • Mescaline, a chemical compound found in a small cactus called peyote, has been used by Indigenous people in northern Mexico and the southwestern U.S. in religious rituals. Mescaline can also be produced in the lab. Mescaline and peyote are Schedule 1 drugs.
  • Dissociative drugs affect how the brain processes glutamate, an abundant chemical released by nerve cells in the brain that plays an important role in learning and memory. These drugs can make people feel disconnected from their bodies and surroundings. Drugs in this category include:
    • PCP, or phencyclidine, was developed in the 1950s as an injectable anesthetic but was discontinued because patients became agitated and delusional. Today it is an illegal street drug. It’s a Schedule 2 drug, which means it has a high potential for abuse, but lower compared to Schedule 1 drugs.
    • Ketamine, a drug developed in the 1960s and used as an anesthetic in the Vietnam War, is approved by the FDA as an anesthetic. It has been shown to play a role in pain management and treatment of depression. It is also illegally used for its hallucinogenic effects. It is a Schedule 3 drug, which means it has a moderate to low potential for physical and psychological dependence. A chemically-similar drug called esketamine is approved by the FDA for the treatment of depression that doesn’t respond to standard treatment.
  • Other hallucinogens, which affect different brain functions and can cause psychedelic and potentially dissociative effects, include:
    • MDMA, or ecstasy, is a synthetic drug that’s a stimulant and hallucinogen. It is a Schedule 1 drug. It has been given the Breakthrough Therapy designation from the FDA for the treatment of PTSD.
    • Salvia is an herb in the mint family that has hallucinogenic effects. It is not a federally controlled drug, but it is controlled in some states, according to the DEA.
    • Ibogaine is derived from the root bark of a West African shrub and is a stimulant and hallucinogen. It is a Schedule 1 drug.

Research on psychedelics

There was a wave of studies on psychedelics, particularly LSD, in the 1950s and 1960s, but they came to a halt when the U.S. declared a “War on Drugs” in 1971 and tightened pharmaceutical regulations. There was little research activity until the early 1990s when studies on drugs such as MDMA and DMT began to emerge.

In 2006, researchers at Johns Hopkins University published a seminal double-blind study in which two-thirds of participants — who had never taken psychedelics previously — said their psychedelic sessions were among the most meaningful experiences of their lives.

“These studies, among others, renewed scientific interest in psychedelics and, accordingly, research into their effects has continued to grow since,” Jacob S. Aday and colleagues write in a 2019 study published in Drug Science, Policy and Law.

In their paper, Aday and colleagues argue that 2018 may be remembered as the true turning point in psychedelic research due to “advances within science, increased public interest, and regulatory changes,” such as psilocybin receiving the “breakthrough therapy” status from the FDA.

Today, there are numerous ongoing clinical trials on the therapeutic potential of psychedelics for different conditions, including substance use disorders and mental health conditions such as depression, anxiety and post-traumatic stress disorder.

Given the growing number of studies on psychedelics, the Food and Drug Administration issued a draft guidance in June 2023 for clinical trials with psychedelic drugs, aiming to help researchers design studies that will yield more reliable results for drug development.

The systematic reviews highlighted below show that there’s a lack of robust study designs in many psychedelic clinical trials. Some have small sample sizes. Some include participants who have used psychedelics before, so when they participate in a randomized controlled clinical trial, they know whether they are receiving psychedelic treatment or a placebo. Or, some include participants who may have certain expectations due to positive coverage in the lay media, hence creating bias in the results.

If you’re covering a study about psychedelics…

It’s important for journalists to pay close attention to study design and speak with an expert who is not involved in the study.

In a February 2024 blog post from Harvard Law School’s Petrie-Flom Center, Leiden University professors Eiko I. Fried and Michiel van Elk share several challenges in psychedelic research:

  • “Conclusions are dramatically overstated in many studies. This ranges from conclusions in the results sections, abstracts, and even titles of papers not consistent with the reported results.”
  • “There is emerging evidence that adverse events resulting from psychedelic substances are both common and underreported.”
  • Some studies don’t have control groups, which can create problems for interpreting results, “because treatments like psychedelics need to be compared against a placebo or other treatment to conclude that they work beyond the placebo effect or already existing, readily available treatments.”
  • “Participants in psychedelic studies usually know if they are in the treatment or control group, which artificially increases the apparent efficacies of psychedelics in clinical studies.”
  • Small sample sizes can affect the statistical power and generalizability of the findings. “Small samples also mean that results are not representative. For example, participants with severe or comorbid mental health problems are commonly excluded from psychedelic studies, and therefore results may look better in these studies than in real-world psychiatric settings.”
  • Many studies do not include long-term follow-ups of participants. “Studying how these people are feeling a few days or weeks after they receive treatment is not sufficient to establish that they are indeed cured from depression.”

Fried and van Elk also have a useful checklist for assessing the quality and scientific rigor of psychedelic research in their 2023 study “History Repeating: Guidelines to Address Common Problems in Psychedelic Science,” published in the journal Therapeutic Advances in Psychopharmacology.

Journalists should also remind their audiences that the drugs are still illegal under federal law and can pose a danger to health.

In California, the number of emergency room visits involving the use of hallucinogens increased by 54% between 2016 and 2022, according to a January 2024 study published in Addiction. Meanwhile, the law enforcement seizure of psychedelic mushrooms has risen dramatically, increasing nearly four-fold between 2017 and 2022, according to a February 2024 study published in the journal Drug and Alcohol Dependence.

Below, we have curated and summarized five recent studies, mostly systematic reviews and meta-analyses, which examine various aspects of psychedelic drugs, including legislative reform; long-term effects; efficacy and safety for the treatment of anxiety, depression and PTSD; and participation of older adults in clinical trials. The research summaries are followed by recommended reading.

Research roundup

Psychedelic Drug Legislative Reform and Legalization in the US
Joshua S. Siegel, James E. Daily, Demetrius A. Perry and Ginger E. Nicol. JAMA Psychiatry, December 2022.

The study: Most psychedelics are Schedule I drugs federally, but state legislative reforms are changing the prospects of the drugs’ availability for treatment and their illegal status. For a better understanding of the legislative reform landscape around Schedule I psychedelic drugs, researchers collected all bills and ballot initiatives related to psychedelic drugs that were introduced into state legislatures between 2019 and September 2022. They used publicly available sources, including BillTrack50, Ballotpedia and LexisNexis.

The findings: In total, 25 states considered 74 bills, although the bills varied widely in their framework. A majority proposed decriminalization but only a few would require medical oversight and some would not even require training or licensure, the authors write. Ten of those bills became law in seven states — Colorado, Connecticut, Hawaii, New Jersey, Oregon, Texas and Washington. As of August 1, 2022, 32 bills were dead and 32 remained active.

The majority of the bills — 67 of them — referred to psilocybin; 27 included both psilocybin and MDMA; 43 proposed decriminalization of psychedelic drugs.

To predict the future legalization of psychedelics, the authors also created two models based on existing medical and recreational marijuana reform. Using 2020 as the year of the first psychedelic decriminalization in Oregon, their models predict that 26 states will legalize psychedelics between 2033 and 2037.

In the authors’ words: “Despite the relative rapidity with which some have embraced psychedelics as legitimate medical treatments, critical questions about the mechanism of action, dosing and dose frequency, durability of response to repeated treatments, drug-drug interactions, and the role psychotherapy plays in therapeutic efficacy remain unanswered. This last point is critical, as a significant safety concern associated with drugs like psilocybin, MDMA, or LSD is the suggestibility and vulnerability of the patient while under the influence of the drug. Thus, training and clinical oversight is necessary to ensure safety and also therapeutic efficacy for this divergent class of treatments.”

Who Are You After Psychedelics? A Systematic Review and a Meta-Analysis of the Magnitude of Long-Term Effects of Serotonergic Psychedelics on Cognition/Creativity, Emotional Processing and Personality
Ivana Solaja, et al. Neuroscience & Behavioral Reviews, March 2024.

The study: Many anecdotal reports and observational studies have reported that psychedelics, even at microdoses, which are roughly one-tenth of a typical recreational dose, may enhance certain aspects of cognition and/or creativity, including coming up with new, useful ideas. Cognition is a “range of intellectual functions and processes involved in our ability to perceive, process, comprehend, store and react to information,” the authors explain. There are established relationships between impaired cognitive functioning and mental health disorders.

Due to limitations such as a lack of rigorous study designs, various populations in the studies and lack of documented dosage, it’s difficult to draw any conclusions about changes that last at least one week as a result of consuming psychedelics.

The authors screened 821 studies and based on the criteria they had set, found 10 to be eligible for the review and meta-analysis. The drugs in the studies include psilocybin, ayahuasca and LSD.

The findings: Overall, there was little evidence that these psychedelics have lasting effects on creativity. Also, there was not sufficient evidence to determine if this group of psychedelics enhances cognition and creativity in healthy populations or improves cognitive deficits in the study populations.

Pooled data from three studies showed lasting improvement in emotional processing — perceiving, expressing and managing emotions.

The studies offered little evidence suggesting lasting effects of psychedelics on personality traits.

In the authors’ words: “Results from this study showed very limited evidence for any lasting beneficial effects across these three psychological constructs. However, preliminary meta-analytic evidence suggested that these drugs may have the potential to cause lasting improvement in emotional recognition time. Future studies investigating these constructs should employ larger sample sizes, better control conditions, standardized and validated measures and longer-term follow-ups.”

The Impact of Psychedelics on Patients with Alcohol Use Disorder: A Systematic Review with Meta-Analysis
Dakota Sicignano, et al. Current Medical Research and Opinion, December 2023.

The study: Researchers are exploring the psychedelics’ potential for the treatment of alcohol use disorder, which affected nearly 30 million Americans in 2022. The authors of this study searched PubMed from 1960 to September 2023 for studies on the use of psychedelics to treat alcohol use disorder. Out of 174 English-language studies, they selected six studies that met the criteria for their analysis.

The findings: LSD and psilocybin are promising therapies for alcohol use disorder, the authors report. However, five of the six trials were conducted in the 1960s and 1970s and may not reflect the current treatment views. Also, four of the six studies included patients who had used psychedelics before participating in the study, increasing the risk of bias.

In the authors’ words: “Despite the existence of several clinical trials showing relatively consistent benefits of psychedelic therapy in treating alcohol use disorder, there are important limitations in the dataset that must be appreciated and that preclude a conclusive determination of its value for patient care at this time.”

Older Adults in Psychedelic-Assisted Therapy Trials: A Systematic Review
Lisa Bouchet, et al. Journal of Psychopharmacology, January 2024.

The study: People 65 years and older have been underrepresented in clinical trials involving psychedelics, including the use of psilocybin for the treatment of depression and anxiety. About 15% of adults older than 60 suffer from mental health issues, the authors note. They wanted to quantify the prevalence of older adults enrolled in psychedelic clinical trials and explore safety data in this population. They searched for English-language studies in peer-reviewed journals from January 1950 to September 2023. Of 4,376 studies, the authors selected 36. The studies involved psilocybin, MDMA, LSD, ayahuasca, and DPT (dipropyltryptamine), which is a less-studied synthetic hallucinogen.

The findings: Of the 1,400 patients participating in the selected studies, only 19 were 65 and older. Eighteen received psychedelics for distress related to cancer or other life-threatening illnesses. In a trial of MDMA-assisted therapy for PTSD, only one older adult was included. Adverse reactions to the drugs among older patients, including heart and gastrointestinal issues were resolved within two days and didn’t have a long-lasting impact.

In the authors’ words: “Although existing data in older adults is limited, it does provide preliminary evidence for the safety and tolerability of [psychedelic-assisted therapy] in older patients, and as such, should be more rigorously studied in future clinical trials.”

Efficacy and Safety of Four Psychedelic-Assisted Therapies for Adults with Symptoms of Depression, Anxiety, and Posttraumatic Stress Disorder: A Systematic Review and Meta-Analysis
Anees Bahji, Isis Lunsky, Gilmar Gutierrez and Gustavo Vazquez. Journal of Psychoactive Drugs, November 2023.

The study: LSD, psilocybin, ayahuasca and MDMA have been approved for clinical trials on psychedelic-assisted therapy of mental health conditions in Canada and the U.S. However, major medical associations, including the American Psychiatric Association, have argued that there is insufficient scientific evidence to endorse these drugs for treating mental health disorders. To better understand the current evidence, researchers reviewed 18 blinded, randomized controlled trials, spanning 2008 through 2023. Most studies were conducted in the U.S. or Switzerland.

The findings: The studies overall suggest preliminary evidence that psychedelic drugs are mostly well-tolerated. Psilocybin and MDMA therapies may offer relief from depression and PTSD symptoms for at least a year. Most studies also used therapy and psychological support along with psychedelics.

In the authors’ words: “Despite the promising evidence presented by our study and previous reviews in the field, the evidence base remains limited and underpowered. Long-term efficacy and safety data are lacking,” the authors write. “Future steps should encourage and highlight the need for more robust larger scale randomized controlled trials with longer follow-up periods, and efforts to address regulatory and legal barriers through the collaborations between researchers, healthcare professionals, regulatory bodies, and policymakers.”

Additional reading

Therapeutic Potential of Psychedelics: History, Advancements, and Unexplored Frontiers
Juliana Marino Maia, Bruna Stefane Alves de Oliveira, Luiz G.S. Branco and Renato Nery Soriano. Progress in Neuro-Psychopharmacology and Biological Psychiatry, April 2024.

Aggressive Behaviours Associated with MDMA and Psychedelics: A Narrative Review
Negar Sayrafizadeh, Nicole Ledwos, M. Ishrat Husain and David J. Castle. Acta Neuropsychiatrica, February 2024.

MDMA-Assisted Psychotherapy for PTSD: Growing Evidence for Memory Effects Mediating Treatment Efficacy
Mesud Sarmanlu, Kim P.C. Kuypers, Patrick Vizeli, Timo L. Kvamme. Progress in Neuro-Psychopharmacology and Biological Psychiatry, January 2024

Psychedelic Therapies Reconsidered: Compounds, Clinical Indications, and Cautious Optimism
Jennifer M. Mitchell and Brian T. Anderson. Neuropsychopharmacology, July 2023.

Psychedelics as Therapeutics: Gaps, Challenges and Opportunities
An NIH workshop with video recordings. January 2022.

Trends in MDMA-Related Mortality Across Four Countries
Amanda Roxburgh, et al. Addiction, March 2021.

The Therapeutic Potential of Psychedelic Drugs: Past, Present, and Future
Robin L. Carhart-Harris and Guy M. Goodwin. Neuropsychopharmacology, October 2017.

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Barriers to voting for people with disabilities: An explainer and research roundup https://journalistsresource.org/home/barriers-to-voting-for-people-with-disabilities-an-explainer-and-research-roundup/ Tue, 06 Feb 2024 18:55:27 +0000 https://journalistsresource.org/?p=77402 Voters with disabilities face a range of barriers, while compliance with disability access laws at polling sites is under-enforced.

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Major public health and medical associations in the U.S., including the American College of Physicians, American Medical Association and the American Public Health Association have recognized voting as a social determinant of health and have called for equitable access to voting, including for people with disabilities.

A growing body of research shows that voting and health are intertwined. People affected by poor health or disabilities are less likely to cast a ballot than the general population, and as a result, have less sway over who gets to be in power and what policies are made.

When previously disenfranchised people, including people with disabilities, vote, policies that benefit everyone and better health outcomes follow, according to County Health Rankings & Roadmaps, a program of the University of Wisconsin Population Health Institute.

About 42.5 million Americans have disabilities, according to 2021 data from the U.S. Census Bureau. A disability is any condition of the body or mind that makes it more difficult for a person to do certain activities or interact with the world around them, according to the Centers for Disease Control and Prevention.

In the November 2020 election, individuals with disabilities voted at a 7% lower rate than people without disabilities, according to the Disability and Voting Accessibility in the 2020 Elections survey by the U.S. Election Assistance Commission and Rutgers University. More than 11% — nearly 2 million people with disabilities — said they faced difficulties voting.

Voters with disabilities face a range of barriers, including inaccessible voting places, lack of accessible voting machines, and state laws that restrict voting by mail or criminalize assisting a person in voting, according to the American Civil Liberties Union.

When the Government Accountability Office officials visited 167 polling places during the 2016 general election, only 17% were fully accessible for people with disabilities who wanted to vote in person. The most common barriers were steep ramps, lack of signs for accessible paths to the building, gravel parking lots or lack of parking options.

In 2023, at least 14 states enacted 17 restrictive voting laws, which will take effect for the 2024 general election, according to the Brennan Center for Justice, a nonpartisan law and policy institute at New York University. Most of the laws limit mail-in voting, shorten the window of requesting a mail ballot or ban drop boxes. Even though these laws don’t target people with disabilities, they create additional barriers for them.

People who live in institutions like nursing homes, those who are under legal guardianship and people with mental illness are also less likely to vote than the general population, research has shown. In some cases, these people are prohibited from voting by state law.

Several states bar individuals under guardianship or conservatorship from voting, according to a 2022 study published in the Election Law Journal.

“Out of 50 states and the District of Columbia, 35 have constitutional provisions that specifically do not allow mentally incapacitated individuals to vote and thirteen state constitutions are silent on whether an individual with limited capacity can vote. Most states require a court order to disenfranchise individuals with limited capacity either as part of the appointment of a limited guardianship or as part of the voter registration process,” according to a 2022 explainer by the American Bar Association.

Although federal elections are mainly conducted under state laws and policies, several federal laws specifically address accessibility issues for voters with disabilities in states and counties, according to a 2021 report by the U.S. Government Accountability Office. Those provisions are included in the Americans with Disabilities Act of 1990 and the Help America Vote Act of 2002. The U.S. Election Assistance Commission, which sets guidelines for counties and states, has a dedicated page for voting accessibility. And those guidelines can be enforced by the Department of Justice.

Below, we have gathered four studies that examine the relationship between voting in the U.S. and disabilities. The research roundup is followed by several story ideas and interview questions for journalists.

The findings show…

  • People with disabilities are less likely to vote than people without disabilities and state laws that restrict voting further limit their ability to vote.
  • Voting rates vary depending on the type and level of disability. For instance, people with hearing disability tend to vote at a similar rate as the general population while the voting rate among people with mental disabilities has been shown to be 18% lower than the general population. Also, people with more functional limitations, including difficulty speaking and reading, were less likely to vote than people who didn’t have those challenges.
  • Compliance with disability access laws at polling sites is under-enforced. There is no national ADA certification or permitting process to ensure that voting locations are accessible.
  • Some states have competency laws that prevent certain groups of people with disabilities from voting, such as people who have legal guardians, even though such arrangements might have nothing to do with the person’s ability to vote. In many states, only a judge may decide whether an individual shouldn’t have the ability to vote.
  • People living in nursing homes and assisted living facilities are enthusiastic to vote but face numerous hurdles to cast a ballot.

Research roundup

Disenfranchisement and Voting Opportunity Among People With Intellectual and Developmental Disabilities
Sarah Nelson Lineberry and Matthew Bogenschutz. Journal of the Society for Social Work & Research, Winter 2023.

The study: The paper examines predictors of voting among people with intellectual and developmental disabilities who received state-funded disability services in Virginia. The authors used data from the state’s 2017-2018 and 2018-2019 National Core Indicators In-Person Survey — a collaborative project of the National Association of State Directors of Developmental Disability Services and the Human Service Research Institute. The sample included 1,620 people.

The findings: People with more severe intellectual and developmental disabilities, those with guardians, and those who have not attended advocacy events are less likely to vote than their peers, the study finds. Having a key to one’s home and being able to lock one’s bedroom door were associated with an increased likelihood of voting. Social workers have the opportunity to help increase voting opportunities for people with intellectual and developmental disabilities, the authors write.

In the authors’ words: “Results suggest that people with severe or profound levels of [intellectual and developmental disabilities] have a particularly limited voice in American democracy, which should serve as a call to action for advocates to do more to ensure that voting opportunity the most fundamental of democratic rights — is accessible to all people.”

Also: Voting Rights for Persons with Serious Mental Illnesses in the U.S., published in 2019 in the Psychiatric Rehabilitation Journal provides a detailed overview of the issues.

Defending Voting Rights in Long-Term Care Institutions
Nina A. Kohn and Casey Smith. Boston University Law Review, 2023.

The study: Nearly 2.2 million Americans live in long-term care facilities in the U.S., including nursing homes and assisted living facilities. There’s a growing consensus among scholars and policymakers that “a person has the cognitive capacity to vote so long as they can somehow express a voting choice,” the authors write. And contrary to common assumptions, most long-term care residents don’t have substantial cognitive disabilities. Researchers reviewed nursing home inspection reports from 2016 to 2021 to better understand barriers to voting.

The findings: The authors’ review of nursing home inspection reports finds evidence that residents are enthusiastic about voting. But they identified more than 100 documented instances of nursing homes violating residents’ voting rights. Long-term care residents face systemic disenfranchisement, including “burdensome election procedures, profound isolation, and widespread failure by facilities to provide required assistance prevent long-term care residents from voting,” they write.

In the authors’ words: “Indeed, even a few, targeted cases defending the voting rights of long-term care residents could undermine the harmful assumption that this population does not have the ability to vote and that their voting rights are — as some states suggested amid the COVID-19 pandemic — ‘non-essential.’”

Designing Accessible Elections: Recommendations from Disability Voting Rights Advocates
Ihaab Syed, et al. Election Law Journal, March 2022.

The study: The article analyzes some of the main reasons why barriers to voting for people with disabilities persist and offers insights into how local and state election officials can improve election policies, practices and procedures.

The findings: One of the main reasons for voting inaccessibility is a complex and decentralized system of administering elections. Laws are under-enforced and there’s a failure to ask for the perspective, preferences and needs of people with disabilities. Most states don’t have a deadline for counties to designate polling places, let alone require an audit of the site for accessibility. The DOJ, which has the authority to issue regulations and litigate actions, has not been very active, researchers write. Also, policymakers must account for the fact that some people with disabilities will prefer or need to receive in-person assistance, and electoral policies must not interfere with their ability to get assistance from the person of their choice, they write.

In the authors’ words: “In closing, we urge election officials (and policymakers at all levels of government) to take seriously a slogan that has become a powerful rallying cry in the disability rights movement: ‘Nothing about us without us.’”

Disability and Voting Accessibility in the 2020 Elections: Final Report on Survey Results Submitted to the Election Assistance Commission
Lisa Schur and Douglas Kruse. February 2021.

The study: This paper is based on a nationally representative survey of 2,569 U.S. participants: 1,782 with disabilities and 787 without disabilities. The survey was conducted by SSRS, a well-established survey firm.

The findings: The 52-page report is filled with data, but here are some highlights.

  • People with disabilities are more likely to be older and non-married, less likely to have high school or college degrees, and less likely to be Hispanic or Latino, compared with people without disabilities.
  • The incidence of voting difficulties for people with disabilities dropped markedly, from 26.1% in 2012 to 11.4% in 2020. However, the overall rate of difficulties for voters with disabilities in 2020 was almost twice the rate for voters without disabilities (11% compared to 6%).
  • 30% of people with cognitive impairment and 24% of people with vision impairment reported difficulty in voting at a polling place, compared with 9.8% of people without a disability.
  • Mobility limitations were most common (48%) among people with disabilities, followed by cognitive (24%), hearing (18%), and vision (12%) impairments. (Some respondents fell into more than one category.)
  • 49% of people with disabilities voted at a polling place or election office in 2020, compared with 56% of voters without disabilities.
  • 55% of people with disabilities, including those with mobility limitations and those needing help with daily activities used mail ballots, compared with 44% of voters without disabilities.
  • 74% of people with disabilities used early voting and voting by mail, compared with 69% of voters without disabilities.
  • 53% of people with disabilities said they follow politics most of the time, compared with 42% of people without disabilities.

In the authors’ words: “The results show significant progress has been made in voting accessibility since 2012. This reflects well on the efforts of the EAC, election officials, policy-makers, and disability organizations. Nevertheless, voters with disabilities remain significantly more likely than those without disabilities to experience voting difficulties, indicating that more work needs to be done to improve accessibility.”

Also: The authors conducted another survey during the November 2022 elections, finding comparable results to 2020 but better accessibility than in 2012.

Disability and Election Administration in the United States: Barriers and Improvements
April A. Johnson and Sierra Powell. Policy Studies, November 2019.

The study: The authors examine whether lower voter turnout among people with disabilities is directly related to voting procedures, including voter registration, voter identification regulations and methods of ballot submission. They analyzed data from the 2012 and 2016 Cooperative Congressional Election Study, a survey of more than 50,000 Americans conducted by polling firm YouGov before and after presidential and midterm elections.

The findings: Overall, 30% of people with disabilities in 2016, and 37% of people with disabilities in 2012 specifically cited “disability or illness” as the main reason why they did not vote. Registering oneself to vote was a substantial barrier for people with disabilities. Also, voting by mail, instead of early voting or same-day registration, may be more inclusive for people with disabilities.

In the authors’ words: “One of the most disturbing discoveries presented here is that election administration also affects one’s psychological state. Electoral systems which impose or magnify perceptions of intimidation at the polls among any group of persons should garner both serious attention and pointed remedies,” the authors write. “We agree and believe that poll workers may benefit from more specialized training, specifically with regard to accommodations for those with cognitive, physical, or emotional limitations. Such administrative efforts may serve to reduce the ‘chilling effect’ of perceived hostile voting conditions.”

Suggested story ideas and interview questions

  • Are your area’s polling places accessible to people with disabilities? To start, read GAO’s 2021 and 2017 reports to understand barriers, laws and solutions. The U.S. Department of Justice has an accessibility checklist for polling places. Also, the National Institute of Standards and Technology within the Department of Commerce examines technological barriers to the voting process for people with disabilities.
  • Ask your local election officials how they are making voting places more accessible to people with disabilities. Do they have data on what percentage of polling places are fully accessible and how that rate has changed over time?
  • Speak with advocacy groups and disability rights activists about barriers to voting in your state and county.
  • What barriers do people in nursing homes, assisted living facilities and other institutions face in voting in your state or county? The National Disability Rights Network has a helpful explainer to get you started.
  • What are your state’s voting laws for people under guardianship? Start with this 2022 explainer from the American Bar Association and this 2023 report by the National Disability Rights Network. This 2018 guide for voters with mental disabilities by the Bazelon Center for Mental Health Law also explains the basics.
  • Are your area nursing homes assisting their residents who want to vote? You may be able to find past violations in nursing home inspection reports.
  • Also, don’t forget to use proper style. The National Center on Disability and Journalism has a language style guide. The Arc, an advocacy organization for the rights of people with intellectual and developmental disabilities has a Journalist’s Guide to Disability for Election 2024.

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EMTALA and abortions: An explainer and research roundup https://journalistsresource.org/home/emtala-explainer/ Wed, 24 Jan 2024 14:56:23 +0000 https://journalistsresource.org/?p=77255 Under a federal law, hospital emergency departments must provide appropriate emergency medical treatment to any patients who need it. But now the U.S. Supreme Court is considering a case that questions the law's precedence over state-level abortion bans.

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For nearly four decades now, a federal law known as the Emergency Medical Treatment and Labor Act, or EMTALA, has given Americans the right to receive care at emergency departments, regardless of income or insurance status. The law applies to all kinds of emergencies, including pregnant people in labor, or those for whom an abortion may be medically necessary to preserve their health or save their life.

Since the U.S. Supreme Court struck down the constitutional right to abortion in June 2022, some experts have worried that EMTALA would clash with states that restrict or ban abortions. So far, two states — Texas and Idaho — have ongoing lawsuits with the federal government, claiming their state bans and restrictions on abortion take precedence over EMTALA. And on January 5, the Supreme Court said it would consider Idaho’s case, which centers on the relationship between EMTALA and the state’s abortion ban.

Legal experts worry that if the Supreme Court rules in favor of Idaho and allows states to shape their own laws for pregnancy emergencies without regard to EMTALA, then the states could apply the same logic to all other forms of emergency medical care that currently covered under the federal emergency law.

“So, states could start carving out HIV care, or mental health, or serious and chronic conditions that they deem too futile or not worth the time and energy of emergency department,” says Sara Rosenbaum, a professor emerita of health law and policy at George Washington University’s Milken Institute School of Public Health, who has written extensively about EMTALA.

Through memoranda and various efforts, federal health officials have emphasized that EMTALA takes priority over state laws.

Most recently, on January 22, the 51st anniversary of Roe v. Wade, the Department of Health and Human Services and the Centers for Medicare & Medicaid Services introduced new resources for the public and health providers to learn about their rights to receive emergency medical care under EMTALA. The announcement was part of a wider effort by the White House to strengthen Americans’ access to contraception, medication abortion and emergency medical care.

The Department of Health & Human Services has issued other notices about the application of EMTALA, including a memorandum in September 2021 after a Texas abortion ban case, in July 2022 after the overturning of Roe and following an executive order by President Joe Biden, and in May 2023 following the investigation of two hospitals in Missouri and Kansas that violated EMTALA.

“If a physician believes that a pregnant patient presenting at an emergency department is experiencing an emergency medical condition as defined by EMTALA and that abortion is the stabilizing treatment necessary to resolve that condition, the physician must provide that treatment,” states a Biden administration memorandum in July 2022. “When a state law prohibits abortion and does not include an exception for the life of the pregnant person — or draws the exception more narrowly than EMTALA’s emergency medical condition definition — that state law is preempted,” by the federal law.

Abortion rights advocates have filed lawsuits over several states’ strict abortion bans, Axios reported in September. Rosenbaum said she’s preparing an amicus brief on behalf of the American Public Health Association and more than 100 law and policy scholars before the Supreme Court makes its decision on Idaho’s case.

EMTALA in brief

EMTALA was introduced in 1985 with bipartisan support in response to a spate of “patient dumping” cases, which refers to emergency departments refusing care to patients who are indigent and have no health insurance, including patients who were in labor. President Ronald Reagan signed it into law in 1986, when Roe v. Wade was still law of the land.

Under EMTALA, hospitals must examine and stabilize patients, regardless of insurance status, citizenship or other factors.

“It essentially is the closest thing we have in this country to a human rights statute,” says Rosenbaum.

The law applies to all hospitals with emergency departments that participate in Medicare (only about 1% of non-federal community hospitals don’t participate in Medicare, according to the American Hospital Association). The Department of Health and Human Services oversees and enforces EMTALA.

Physicians and hospitals can be fined up to $50,000 per incident of failing to comply with EMTALA and are at risk of exclusion from Medicare and Medicaid programs for repeated violations. Physicians’ malpractice insurance does not cover EMTALA violations.

While EMTALA is an important safety net for people without health insurance, it doesn’t guarantee free care, and patients may still be billed, as the authors of a 2018 study published in AIMS Public Health explain.

Emergency departments and pregnancies

EMTALA covers not only conditions that threaten life but also conditions that can impose severe and long-lasting health impacts. That includes pregnancy-related complications and emergencies that may require medically necessary and life-saving abortions, even though abortion is not specifically mentioned in the law.

The majority of people who have emergencies related to pregnancy go to an emergency department, according to a 2023 study published in the American Journal of Emergency Medicine. At least a third of pregnant women go to an emergency department at some point during their pregnancy, studies have shown and up to 15% suffer from a potentially life-threatening condition during the first trimester.­

A 2020 study of 2.8 million women in Ontario, Canada, who were pregnant between 2002 and 2017, finds that 40% visited an emergency department, mostly during the first trimester or soon after giving birth.

The most common conditions during the first trimester were threatened abortion (the technical term for vaginal bleeding at less than 20 weeks of gestation), hemorrhage (severe bleeding), and spontaneous abortion (miscarriage), according to the study.

Other emergency medical conditions involving pregnant patients may include but are not limited to ectopic pregnancy — which is when a fertilized egg grows outside of the uterus and can be a life-threatening emergency, complications of pregnancy loss, or high blood pressure conditions such as severe preeclampsia.

Dr. Glenn Goodwin, an emergency physician in Florida, says at every shift there’s a first-trimester pregnant patient who’s bleeding.

“I’d say probably 10% of our ER visits are somewhat OB-related, whether it’s a first-trimester bleed, or whether it’s abdominal pain in pregnancy,” Goodwin says. “How many of those cases are actually life-threatening? Very, very few.”

EMTALA and state abortion bans

Since the end of Roe in June 2022, 14 states have enacted a total ban on abortion, four states ban abortion after six or 12 weeks, and seven after 15 or 22 weeks. Abortion is legal, including beyond 22 weeks, in 25 states and the District of Columbia, according to the KFF, a nonpartisan health policy research organization.

What leads to confusion among health providers is the vague language of the law in states that have abortion bans.

For instance, many states with strict abortion bans have exceptions to “prevent the death” or “preserve the life” of the pregnant person, according to an analysis by KFF.

Arkansas, Idaho, Mississippi, Oklahoma and South Dakota have exceptions to save the life of the pregnant person, but do not have any exceptions for protecting their health.

Other states with abortion bans have exceptions that consider protecting the health of the pregnant person — not just their life — permitting abortion care when there’s a serious risk of substantial and irreversible impairment of a major bodily function. The Texas abortion ban says physicians must determine whether an abortion is necessary based on their “reasonable medical judgment.”

“These exceptions are not clear how much risk of death or how close to death a pregnant patient may need to be for the exception to apply, and the determination is not explicitly up to the physician treating the pregnant patient,” according to the KFF analysis.

A KFF 2023 National OBGYN survey, including 569 physicians, finds more than half of those who practiced in states that banned abortion were concerned about their legal risk when deciding on the necessity of abortions.

In an opinion piece published in the Annals of Internal Medicine in January 2023, Dr. Eli Y. Adashi and I. Glenn Cohen write, “physicians in restrictive states face extremely difficult choices between protecting pregnant persons and the threat of legal sanctions.”

Out of frustration with confusion in his own emergency department, Goodwin, the Florida emergency physician, set out to do a study in 2022 on state abortion laws and whether they conflicted with EMTALA.

He and his co-authors find that the overturning of Roe “does not prohibit termination of pregnancy in the setting of life-threatening conditions to the mother, including ectopic pregnancy, preeclampsia, and others,” but they recommend that “physicians be mindful of the rapidly-evolving laws in their particular state, and to also practice in accordance with Emergency Medical Treatment and Active Labor Act (EMTALA). Patient safety must be prioritized.”

Goodwin completed his study before the Supreme Court said that it will consider whether EMTALA takes priority over Idaho’s restrictive abortion ban. The oral arguments are scheduled for April.

Before states like Florida passed a 15-week abortion ban except for saving the patient’s life, things were much clearer for emergency physicians like Goodwin.

“We never really considered any legal ramification at all,” Goodwin says. “The patient came in and all of our brains were just focused on the medical aspect of care. Since this law change, we have to consider some of the legal aspects of it.”

He gave the example of a patient who’s 15 weeks pregnant, has been bleeding for days and is miscarrying, but still has a fetus with a heartbeat.

“At that point, the conventional medical treatment will be to just give an abortive medication, because there’s really no chance of this fetus living and the mother is bleeding,” he says. “And you don’t want her to continue bleeding because that would be a risk.”

But Florida’s 15-week abortion ban makes the decision complicated. For Goodwin, whose hospital doesn’t have a labor and delivery unit, the solution would have been to transfer the patient to another hospital that has a labor and delivery unit, instead of proceeding with the standard treatment in his own emergency room.

Goodwin also worries that the ongoing legal battles will further reduce the number of medical students who will choose to specialize in Ob/Gyn.

“You have Ob/Gyn hopefuls saying they don’t want to train in states like Mississippi because they’re not going to learn how to do an abortion,” Goodwin says. “And however you feel about abortion, it is kind of a crucial aspect of Ob/Gyn training because there are times where you have to do it as a life-saving procedure.”

An April 2023 report by the Association of American Medical Colleges shows that the number of applicants for Ob/Gyn residencies dropped in all states in 2023, but had the steepest decline in states with abortion bans. In those states, applications dropped by 10.5% compared with the previous year.

To help journalists prepare to cover the upcoming Supreme Court hearing, we’ve gathered several research studies on EMTALA, including analyses of hospitals’ general compliance issues since the law was passed. The studies were published both before and after the overturning of Roe.

Research roundup

A National Analysis of ED Presentations for Early Pregnancy and Complications: Implications for Post-Roe America
Glenn Goodwin, et al. The American Journal of Emergency Medicine, August 2023.

The study: The study, published before the Supreme Court took up EMTALA, uses data from the National Hospital Ambulatory Medical Care Survey, from 2016 to 2020, to evaluate trends in pregnancy-related emergency department visits that could be impacted by restrictive abortion laws. The dataset included 4,556,778 pregnancy-related emergency department visits in the U.S. The authors also analyzed the state laws.

The findings: Nearly 80% of the visits in the study were for patients between 18 to 34 years old. This age group also made up 76% of visits for pregnancy complications, including ectopic pregnancies, and 80% of visits for miscarriage or threat of miscarriage in early pregnancy. This age group also accounted for all visits for complications following an induced abortion or a failed abortion.

A quarter of the patients were Black and 70% were white. By ethnicity, 27% of the patients were Hispanic.

Almost 71% of the visits were due to complications after an induced abortion occurred in patients who lived in the South. Such visits were also twice as likely to occur in non-metro areas.

Nearly 50% of the patients were covered by Medicaid, compared with about 25% with private insurance. About 10% had no insurance.

The takeaway: Pregnancy-related emergency department visits comprise a significant proportion of emergency care, the authors write. The overturning of Roe “does not prohibit termination of pregnancy in the setting of life-threatening conditions to the mother, including ectopic pregnancy, preeclampsia, and others, but the resultant uncertainty and ambiguity surrounding the constitutional change is leading to an over-compliance of the law, necessarily obstructing reproductive health care,” they write.

Penalties for Emergency Medical Treatment and Labor Act Violations Involving Obstetrical Emergencies
Sophie Terp, et al. The Western Journal of Emergency Medicine, March 2020.

The study: There’s no question that EMTALA applies to active labor, which is the only medical condition — labor — included in the title of the law, the authors write. They review descriptions of EMTALA violation settlements involving labor and other obstetric emergencies, listed on the Office of the Inspector General website between 2002 and 2018.

The findings: Of 232 EMTALA violation settlements, 17% (39) involved active labor and other obstetric emergencies. Settlements involving obstetric emergencies increased from 17% to 40% during the study period. Of those, 18% involved a pregnant minor. Most violations involved failure to screen and/or stabilize the pregnant patient.

Of the 39 cases, the Southeast had the most number of violations — 38%, including eight violations in Florida and five in North Carolina.

The takeaway: “Recent cases highlight the need for hospital administrators, emergency physicians, and obstetricians to evaluate and strengthen policies and procedures related to both screening exams and stabilizing care of patients with labor and OB emergencies, even if the hospital does not provide dedicated OB care,” the authors write.

Complying With the Emergency Medical Treatment and Labor Act (EMTALA): Challenges and Solutions
Charleen Hsuan, et al. Journal of Healthcare Risk Management, November 2017.

The study: Despite the passage of EMTALA in 1986, hospitals continue to violate it, which includes refusing to examine or stabilize patients, or making inappropriate transfers to other hospitals. In the first decade after the law was passed, nearly one-third of U.S. hospitals were investigated for EMTALA violations. “And as of 2011, almost 30 years after the Act was passed, 40% of investigations still found violations,” they write.

The authors explore the reasons for not complying with EMTALA and suggest ways to improve compliance. Their analysis is based on 11 interviews with hospital officials, hospital associations and patient safety organizations that review clinical data on EMTALA violations in Georgia, Kentucky, North Carolina, South Carolina and Tennessee. The South had the highest number of EMTALA complaints at the time, compared with other U.S. regions.

The findings: There were five main reasons for non-compliance: financial incentives to avoid unprofitable patients; ignorance of EMTALA’s requirements; high burned of referral at hospitals that receive EMTALA transfer patients; reluctance to jeopardize relationships with transfer partners by reporting borderline EMTALA violations; and opposing priorities of hospitals and physicians.

The authors propose four ways to improve compliance with EMTALA: align federal and state payment policies with EMTALA; amend EMTALA to permit informal mediation sessions between hospitals to address borderline EMTALA violations; increase the hospital role in EMTALA training and spread information; and increase the role of hospital associations.

Emergency Medical Treatment and Labor Act (EMTALA) 2002-15: Review of Office of Inspector General Patient Dumping Settlements
Nadia Zuabi, Larry D. Weiss, and Mark I. Langdorf. The Western Journal of Emergency Medicine, May 2016.

The study: The Office of Inspector General (OIG) of the Department of Health and Human Services enforces EMTALA. The study examines the scope, cost, frequency and common allegations leading to mandatory settlements against hospitals and physicians for patient dumping. The enforcement actions are listed on the OIG website, where you can find more recent cases.

The findings: Between 2002 and 2015, there were 192 settlements, with fines adding up to $6.4 million. The average fine against hospitals was $33,435 and against physicians was $25,625. 96% of the fines were against hospitals.

The most common settlements were for failing to screen the patient or stabilize them in emergency situations. There were 22 cases of inappropriate transfer to another hospital and another 22 cases for failing to transfer to a facility that could care for the patient. In 25 cases, hospitals failed to accept an appropriate transfer. In 30 cases hospitals turned away patients because their insurance or financial status. Thirteen cases involved a patient in active labor.

Examining EMTALA in the Era of the Patient Protection and Affordable Care Act
Ryan M. McKenna, et al. ASIM Public Health, October 2018.

The study: The authors examine the characteristics of hospitals that violated EMTALA between 2002 and 2015 — before and after the implementation of ACA in 2014 — using the OIG database and matching them with a national hospital database.

The findings: There were 191 EMTALA settlement agreements during the study period, although the analysis included 167 cases after excluding others due to lack of data. Settlements decreased from a high of 46 in 2002 to a low of six in 2015, a decline of 87%. The settlements were most common in hospitals in the South (48%) and urban areas (74%). The average settlement for hospitals was $31,734, adding up to $5,299,500 during the study period.

The takeaway: There was an overall downward trend in violations of EMTALA, even though the study can’t establish that the implementation of ACA caused the downward trend. The authors suggest the reduction in EMTALA violations could be due to two factors: “First, in shifting hospitals’ payer mix away from self-pay, the insurance expansion of the ACA reduces the risk of uncompensated care to systems,” they write. “Second, the ACA helped improve access to health care at facilities other than the ED.”

Additional reading

Will EMTALA Be There for People with Pregnancy-Related Emergencies?
Sara Rosenbaum, Alexander Somodevilla and Maria Casoni. The New England Journal of Medicine, September 2022.

The Enduring Role Of The Emergency Medical Treatment And Active Labor Act
Sara Rosenbaum. Health Affairs, December 2013.

Emergency Medical Treatment and Labor Act: Impact on Health Care, Nursing, Quality, and Safety
Theresa Ryan Schultz, Jacqueline Forbes, and Ashley Hafen Packard. Quality Management in Health Care, March 2024.

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Hope: A research-based explainer https://journalistsresource.org/home/hope-research-based-explainer/ Tue, 09 Jan 2024 21:39:39 +0000 https://journalistsresource.org/?p=77168 Hope is complex, but as we embark on a challenging year of news, it’s important for journalists to learn about it. We’ve gathered several studies below to help you think more deeply about hope and recognize its role in our everyday lives.

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This year, more than 60 countries, representing more than 4 billion people, will hold major elections. News headlines already are reporting that voters are hanging on to hope. When things get tough or don’t go our way, we’re told to hang on to hope. HOPE was the only word printed on President Barack Obama’s iconic campaign poster in 2008.

Research on hope has flourished only in recent decades. There’s now a growing recognition that hope has a role in physical, social, and mental health outcomes, including promoting resilience. As we embark on a challenging year of news, it’s important for journalists to learn about hope.

So what is hope? And what does the research say about it?

Merriam-Webster defines hope as a “desire accompanied by expectation of or belief in fulfillment.” This definition highlights the two basic dimensions of hope: a desire and a belief in the possibility of attaining that desire.

Hope is not Pollyannaish optimism, writes psychologist Everett Worthington in a 2020 article for The Conversation. “Instead, hope is a motivation to persevere toward a goal or end state, even if we’re skeptical that a positive outcome is likely.”

There are several scientific theories about hope.

One of the first, and most well-known, theories on hope was introduced in 1991 by American psychologist Charles R. Snyder.

In a paper published in the Journal of Personality and Social Psychology, Snyder defined hope as a cognitive trait centered on the pursuit of goals and built on two components: a sense of agency in achieving a goal, and a perceived ability to create pathways to achieve that goal. He defined hope as something individualistic.

Snyder also introduced the Hope Scale, which continues to be used today, as a way to measure hope. He suggested that some people have higher levels of hope than others and there seem to be benefits to being more hopeful.

“For example, we would expect that higher as compared with lower hope people are more likely to have a healthy lifestyle, to avoid life crises, and to cope better with stressors when they are encountered,” they write.

Others have suggested broader definitions.

In 1992, Kaye Herth, a professor of nursing and a scholar on hope, defined hope as “a multidimensional dynamic life force characterized by a confident yet uncertain expectation of achieving good, which to the hoping person, is realistically possible and personally significant.” Herth also developed the Herth Hope Index, which is used in various settings, including clinical practice and research.

More recently, others have offered an even broader definition of hope.

Anthony Scioli, a clinical psychologist and author of several books on hope, defines hope “as an emotion with spiritual dimensions,” in a 2023 review published in Current Opinion in Psychology. “Hope is best viewed as an ameliorating emotion, designed to fill the liminal space between need and reality.”

Hope is also nuanced.

“Our hopes may be active or passive, patient or critical, private or collective, grounded in the evidence or resolute in spite of it, socially conservative or socially transformative,” writes Darren Webb in a 2007 study published in History of the Human Sciences. “We all hope, but we experience this most human of all mental feelings in a variety of modes.”

To be sure, a few studies have shown that hope can have negative outcomes in certain populations and situations. For example, one study highlighted in the research roundup below finds that Black college students who had higher levels of hope experienced more stress due to racial discrimination compared with Black students who had lower levels of hope.

Today, hope is one of the most well-studied constructs within the field of positive psychology, according to the journal Current Opinion in Psychology, which dedicated its August 2023 issue to the subject. (Positive psychology is a branch of psychology focused on characters and behaviors that allow people to flourish.)

We’ve gathered several studies below to help you think more deeply about hope and recognize its role in your everyday lives.

Research roundup

The Role of Hope in Subsequent Health and Well-Being For Older Adults: An Outcome-Wide Longitudinal Approach
Katelyn N.G. Long, et al. Global Epidemiology, November 2020.

The study: To explore the potential public health implications of hope, researchers examine the relationship between hope and physical, behavioral and psychosocial outcomes in 12,998 older adults in the U.S. with a mean age of 66.

Researchers note that most investigations on hope have focused on psychological and social well-being outcomes and less attention has been paid to its impact on physical and behavioral health, particularly among older adults.

The findings: Results show a positive association between an increased sense of hope and a variety of behavioral and psychosocial outcomes, such as fewer sleep problems, more physical activity, optimism and satisfaction with life. However, there wasn’t a clear association between hope and all physical health outcomes. For instance, hope was associated with a reduced number of chronic conditions, but not with stroke, diabetes and hypertension.

The takeaway: “The later stages of life are often defined by loss: the loss of health, loved ones, social support networks, independence, and (eventually) loss of life itself,” the authors write. “Our results suggest that standard public health promotion activities, which often focus solely on physical health, might be expanded to include a wider range of factors that may lead to gains in hope. For example, alongside community-based health and nutrition programs aimed at reducing chronic conditions like hypertension, programs that help strengthen marital relations (e.g., closeness with a spouse), provide opportunities to volunteer, help lower anxiety, or increase connection with friends may potentially increase levels of hope, which in turn, may improve levels of health and well-being in a variety of domains.”

Associated Factors of Hope in Cancer Patients During Treatment: A Systematic Literature Review
Corine Nierop-van Baalen, Maria Grypdonck, Ann van Hecke and Sofie Verhaeghe. Journal of Advanced Nursing, March 2020.

The study: The authors review 33 studies, written in English or Dutch and published in the past decade, on the relationship between hope and the quality of life and well-being of patients with cancer. Studies have shown that many cancer patients respond to their diagnosis by nurturing hope, while many health professionals feel uneasy when patients’ hopes go far beyond their prognosis, the authors write.

The findings: Quality of life, social support and spiritual well-being were positively associated with hope, as measured with various scales. Whereas symptoms, psychological distress and depression had a negative association with hope. Hope didn’t seem to be affected by the type or stage of cancer or the patient’s demographics.

The takeaway: “Hope seems to be a process that is determined by a person’s inner being rather than influenced from the outside,” the authors write. “These factors are typically given meaning by the patients themselves. Social support, for example, is not about how many patients experience support, but that this support has real meaning for them.”

Characterizing Hope: An Interdisciplinary Overview of the Characteristics of Hope
Emma Pleeging, Job van Exel and Martijn Burger. Applied Research in Quality of Life, September 2021.

The study: This systematic review provides an overview of the concept of hope based on 66 academic papers in ten academic fields, including economics and business studies, environmental studies, health studies, history, humanities, philosophy, political science, psychology, social science, theology and youth studies, resulting in seven themes and 41 sub-themes.

The findings: The authors boil down their findings to seven components: internal and external sources, the individual and social experience of hope, internal and external effects, and the object of hope, which can be “just about anything we can imagine,” the authors write.

The takeaway: “An important implication of these results lies in the way hope is measured in applied and scientific research,” researchers write. “When measuring hope or developing instruments to measure it, researchers could be well-advised to take note of the broader understanding of the topic, to prevent that important characteristics might be overlooked.”

Revisiting the Paradox of Hope: The Role of Discrimination Among First-Year Black College Students
Ryon C. McDermott, et al. Journal of Counseling Psychology, March 2020.

The study: Researchers examine the moderating effects of hope on the association between experiencing racial discrimination, stress and academic well-being among 203 first-year U.S. Black college students. They build on a small body of evidence that suggests high levels of hope might have a negative effect on Black college students who experience racial discrimination.

The authors use data gathered as part of an annual paper-and-pencil survey of first-year college students at a university on the Gulf Coast, which the study doesn’t identify.

The findings: Researchers find that Black students who had higher levels of hope experienced more stress due to racial discrimination compared with students who had lower levels of hope. On the other hand, Black students with low levels of hope may be less likely to experience stress when they encounter discrimination.

Meanwhile, Black students who had high levels of hope were more successful in academic integration — which researchers define as satisfaction with and integration into the academic aspects of college life — despite facing discrimination. But low levels of hope had a negative impact on students’ academic well-being.

“The present study found evidence that a core construct in positive psychology, hope, may not always protect Black students from experiencing the psychological sting of discrimination, but it was still beneficial to their academic well-being,” the authors write.

The takeaway: “Our findings also highlight an urgent need to reduce discrimination on college campuses,” the researchers write. “Reducing discrimination could help Black students (and other racial minorities) avoid additional stress, as well as help them realize the full psychological and academic benefits of having high levels of hope.”

Additional reading

Hope Across Cultural Groups Lisa M. Edwards and Kat McConnell. Current Opinion in Psychology, February 2023.

The Psychology of Hope: A Diagnostic and Prescriptive Account Anthony Scioli. “Historical and Multidisciplinary Perspectives on Hope,” July 2020.

Hope Theory: Rainbows in the Mind C.R. Snyder. Psychological Inquiry, 2002

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Seasonal holiday injuries: A research roundup https://journalistsresource.org/home/seasonal-holiday-injuries-a-research-roundup/ Wed, 20 Dec 2023 14:51:44 +0000 https://journalistsresource.org/?p=76977 Holidays are a time for celebration, but also a source of injuries. Several research studies examine both common and uncommon types and sources of seasonal holiday injuries, which usually peak on the week after Thanksgiving and continue until the end of the year.

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Winter holidays bring celebrations, family traditions, light decorations, special foods and delicacies, and indoor and outdoor activities.

But they can also bring injuries and health problems. Research shows a range of injuries in kids and adults stemming from swallowing Christmas ornaments and decorations, falling from a ladder when putting up lights — or falling from Santa’s lap, suffering burns from touching the candles on a menorah or from biting into a hot deep-fried donut. In some, binging on alcoholic drinks can induce atrial fibrillation, leading to a condition known as “holiday heart syndrome.”

Each year, nearly 18,400 people visit emergency rooms because of accidents with Christmas decorations, according to USAFacts, a non-profit organization that provides U.S. data and reports, using data from the Consumer Product Safety Commission. The peak of those injuries is usually the Sunday after Thanksgiving.

To be sure, compared with other holidays such as Memorial Day, Fourth of July and Halloween, Christmas has a lower number of injuries, a 2010 study found. But seasonal holiday injuries and health issues make headlines each year.

Earlier this month, a Michigan woman suffered significant burns after her robe caught fire at a church’s Christmas event, reported Hometown Life, a Gannett-owned publication. “Someone put a candle in the wrong place,” the fire chief told the news outlet. A 9-year-old boy suffered injuries after falling from a float in the West Alabama Christmas Parade, according to WVUA 23 News. And ABC News ran an explainer about holiday heart syndrome.

For journalists looking to inform their audiences about health-related holiday topics, we’ve gathered several studies. They’re listed in order of publication date.

Research roundup

Enjoy the Holiday Spirit, Not the Holiday Heart
Ali Syed, Benjamin D. Seadler, David L. Joyce. The Journal of Thoracic and Cardiovascular Surgery, January 2023.

Alcohol is typically part of holiday celebrations and gatherings in Western society. Short-term alcohol use in excess and binge drinking are linked with memory loss, impaired judgment, unintentional injury, violence and driving under the influence.

But a less commonly known consequence of binge drinking is alcohol-induced atrial arrhythmia, known as “Holiday Heart Syndrome,” which was first described in the 1970s, the authors write. (In the United States, 5% to 10% of new atrial fibrillation diagnoses are related to alcohol abuse.)

Symptoms include palpitations, shortness of breath, anxiety, weakness and chest pain.

The authors note that the exact biochemistry of the syndrome is unknown, but the correlation between atrial fibrillation and binge drinking is “undeniable.”

Avoiding A Crisis at Christmas: A Systematic Review of Adverse Health Effects of ‘Chrishaps’ Caused by Traditional Hazard Sources and COVID-19
Ursula Wild, David M. Shaw, Thomas C. Erren. Australian and New Zealand Journal of Public Health, February 2022.

This study aims to find out “which hazards have been scientifically associated with old Christmas essentials such as decoration, gifts, menus, and Santa himself, as well as new challenges associated with COVID‐19?”

The authors examined the findings of 30 studies, most of which were case reports or retrospective analyses, which are types of studies that examine data collected in the past.

The various hazards of Christmas included allergic reactions to poinsettias, Christmas trees and candles; swallowing of Christmas decorations; and falling from ladders, roofs and furniture. In one case, a patient had a supposed case of cyanosis — a condition where the skin, lips and nails turn blue — after receiving a blue bed linen as a Christmas gift.

Christmas dinners can also pose risks, such as higher cholesterol levels and weight gain, the authors write. Also, “two other risks from eating were documented: abdominal pain after eating without chewing and eating a piece of Christmas cake together with a plastic robin,” which was part of the cake decoration, they write.

Pediatric Ingestions of Christmas Past, Present, and Future: A Review of Holiday Trends, 1997 to 2015
Patrick T. Reeves, Jayasree Krishnamurthy, Eric A. Pasman and Cade M. Nylund. Clinical Pediatrics, February 2019.

The authors use National Electronic Injury Surveillance System data from 1997 to 2015, focusing exclusively on cases of children, up to 17 years old, who went to an emergency department due to ingesting Christmas decorations, including ornaments, bells and candles during December and January.

There were an estimated 22,224 such cases over the period studied. Children aged 2 and younger accounted for 84% of the cases. Almost 96% were either treated and released or examined and released without treatment.

The peak of such injuries occurred during the Christmas week.

 “Future advocacy efforts might focus on improving social awareness, parental education, or even federal oversight with regard to these possibly dangerous decorations,” the authors write.

“Oh the Weather Outside is Frightful”: Severe Injury Secondary to Falls While Installing Residential Christmas Lights
Michael R. Driedger, et al. Injury, January 2016.

The study examines the health outcomes of 40 patients in Canada who were admitted to a level 1 trauma center from 2002 to 2012 with severe injuries suffered due to falling while installing Christmas lights. The researchers found this activity can result in life-altering injuries.

In total, 95% of the patients were men with a mean age of 55. Most of the falls (65%) were from ladders and 30% of the patients fell from a roof.

The most common injury was to the head and torso. About 43% of the patients had spine injuries.

“Given the heights associated with this activity, as well as the often hazardous weather conditions, adherence to safety precautions is essential,” the authors write.

Seasonal Foreign Bodies: The Dangers of Winter Holiday Ornamentation
Andrew T. Trout and Alexander J. Towbin. Pediatric Radiology, October 2014.

Children can suffer minor or severe injuries if they swallow winter holiday decorations and ornaments. These injuries mostly occur in children under 5.

In this “pictorial essay,” the authors provide radiology images of a wide range of holiday ornaments they’ve seen in children, including whole glass baubles, large and small, metal hooks used to hang ornaments on trees, small plastic ornaments, individual Christmas lights and Hanukkah decorations, including spinning tops and foil-wrapped coins.

Radiologists play a key role in identifying these foreign bodies in children, the authors write.

“Around the winter holidays, ornaments and decorations can become a source of foreign bodies for pediatric patients, and familiarity with the appearance of these seasonal foreign bodies can be helpful in their identification,” they write.

Jewish Holidays and Their Associated Medical Risks
Jacob Urkin and Sody Naimer. Journal of Community Health, June 2014.

This study summarizes the findings from the existing literature regarding the health hazards related to celebrating Jewish holidays, including Rosh Hashana, Yom Kippur, Passover, Sukkot, Purim and Hanukkah.

The authors highlight several injuries related to Hanukkah, which lasts eight days — starting in late November or in December — and is observed by lighting candles on a candelabrum called a menorah.

“Most of the injuries in Hanukkah are related to burns in children who were carelessly handling lighted candles,” the authors note.

Children often receive foil-wrapped chocolate coins, or gelt, during Hanukkah. Another source of injury is children ingesting the foil covering gelt.

The most popular sweet during Hanukkah — deep-fried donuts called sufganiyot — can be a source of burns in the mouth.

“We assume that the reason for these injuries is that the fluid cream, jam or caramel at the center of the pastry tends to heat much quicker than the surrounding baked dough, especially when heated in the microwave oven. Then, without sensing its extreme heat at the center, the hungry subject will bite into burning hot fluid,” the authors write.

Epidemiology of Pediatric Holiday-Related Injuries Presenting to U.S. Emergency Departments
Anthony D’Ippolito, Christy L. Collins and R. Dawn Comstock. Pediatrics, May 2010.

The study investigates eight major holidays in the U.S. and finds that among children younger than 19, approximately 500,000 holiday-related injuries were treated at emergency departments between 1997 and 2006.

Labor Day, Memorial Day, Fourth of July and Halloween were the holidays with the highest number of injuries per year overall. Christmas, in fact, had the least number of injuries.

Among the study’s other findings:

  • Overall, boys sustained 62% of the injuries.
  • Nearly 30% of injuries were in children younger than 5.
  • The most common injuries were cuts, bruises, fractures and sprains.
  • Nearly 66% of the cuts were to the face.
  • The greatest proportion of deaths occurred around the Fourth of July and New Year’s.

“Parents should closely supervise children who are younger than 5 years on Thanksgiving and Christmas when the proportions of injuries were significantly greater among these younger children compared with the other age groups,” the authors write. “On New Year’s, those aged 15 to 19 years had a significantly greater proportion of injuries compared with all other holidays.”

The BMJ Christmas issue

The BMJ, a prestigious medical journal, has a well-established annual Christmas issue that includes a mix of light-hearted features and peer-reviewed research. Below are highlights from this year’s issue:

  • One study makes the case for the Barbie doll to expand her range of medical and scientific professions.
  • Another study draws a link between a new Doctor Who episode shown during the holidays, especially Christmas Day, and lower death rates in the following year across the UK.
  • To the relief of coffee drinkers, a study finds that coffee machines are not responsible for spreading disease in hospitals.
  • A small study finds putting a chair beside a patient’s bed in the hospital room nudged physicians to sit during the visit, which in turn resulted in higher patient satisfaction.
  • If you’re a fan of the Great British Baking Show, you’ll appreciate this study, which examines the health benefits and harms of Christmas recipes on the show. Results: you can have your cake and eat it too.
  • And if you’re popping the cork on a sparkling wine bottle on New Year’s Eve, be careful, because cork eye injuries can be significant, according to this study. It takes 0.05 seconds for the cork to travel from the bottle to your eye, the authors write. They also share a useful guide for opening a bottle of sparkling wine.

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