The Health Divide: Fresh focus on ableism in health care, DEI backlash, and breast cancer disparities persist
(Photo by Sean Gallup via Getty Images)
People with disabilities often experience barriers to health care, ranging from inaccessible medical offices to biased providers. Now, the National Institutes of Health (NIH) is contributing nearly $30 million to better understand the impact of discrimination this population faces.
Specifically, 10 research studies over five years will explore how ableism impacts pregnancy, childbirth, and postpartum outcomes among Medicaid patients who face intellectual or developmental disabilities, the agency said in a release. Other projects will look into how people with low vision access the health care system and ways that providers can overcome “ableist beliefs” when caring for children who are blind or visually impaired.
STAT reporter Timmy Broderick, a disability in health care reporting fellow, published a Q&A last week with Theresa Cruz, director of the National Center for Medical Rehabilitation Research, the group running the NIH program. These projects underscore a broader shift in the way governmental agencies are understanding and addressing health disparities for people with disabilities, Cruz said. While a medical model focuses on disability as the outcome of a disease or injury, the social model looks at disability as “a construct that comes from a person’s ability and their environment,” Cruz noted.
Using the social model could offer important insights on what might appear perplexing from a purely medical standpoint. For example, why might people with low vision or deafness experience different maternal outcomes? Similarly, why would people in wheelchairs have different cancer screening rates?
“When you look at that, it has nothing to do with the disabling conditions, it has everything to do with the barriers and the environment,” Cruz told Broderick. “If you’re not able to access the mammography, you might not be able to access your screenings or an adjustable exam table. You might not get your pap smears. Those are things that have nothing to do with the cause of the wheelchair use, that’s the environment putting up a barrier between health behaviors.”
Nationwide, more than one in four adults has some form of disability, ranging from cognition and mobility to hearing and vision difficulties, reports the Centers for Disease Control and Prevention.
Health equity contrast in the presidential election
The winner of the U.S. presidential election will shape the course of future epidemics and related health inequities the country is facing, write the authors of a perspective article in The New England Journal of Medicine this month.
Two glaring health inequities the authors highlight early on: the rates for both maternal mortality and firearm mortality are more than 2.5 times higher in Black populations than non-Hispanic White populations. There are also striking health inequities linked to education and income level, such as the use of synthetic opioids and childhood obesity rates.
“Harris and Trump seem to endorse divergent explanations: structural barriers and privilege versus individual merit and grit,” the authors write. That might translate into expanded government services and oversights on the Harris side, or deregulation and an emphasis on individual choice for Trump, write the two authors, at Harvard Kennedy School and Ohio State.
The article offers a roadmap of key issues health reporters might pursue in their own election coverage. These topics range from funding on health equity initiatives to the impact of taxes on Medicare’s solvency. Among the other threads to keep an eye on: Affordable Care Act funding, medical debt, care for incarcerated populations, reproductive rights, and mental health challenges — especially among young people.
Impact of anti-DEI measures on health
Early this year, the Utah legislature passed a bill dismantling diversity, equity, and inclusion (DEI) efforts in public schools and universities. In an opinion piece published this month in The Salt Lake Tribune, medical student Magali de Sauvage explores some of the health ramifications of that legislation, which will likely lead to less diverse medical students and health care providers.
She points to the growing Latino immigrant population in Utah, and the need for a health workforce that better reflects that diversity. The benefits of better Latino representation among medical providers extends beyond language to the trust that can come from a shared cultural background. The bill “will likely hinder the recruitment and retention of diverse medical students and healthcare professionals, negatively impacting health outcomes for immigrant patients,” de Sauvage writes.
The Utah move is set amid a rapidly shifting DEI landscape nationwide. Since 2023, state lawmakers throughout the country have introduced at least 85 anti-DEI bills, writes Akilah Johnson in a recent Washington Post article. Academics interviewed in the article describe “a climate of fear” in which professors may find their names on a “watch list” and funders ask for the word “racism” to be removed from health research projects. Work that was once prioritized in the wake of the 2020 racial reckoning movement is now considered high risk.
“Other efforts to address systemic racism and inequality — in education and corporate America — have encountered resistance, but the stakes are especially stark with health care because centuries of inequities yield life-or-death consequences,” Johnson writes.
CDC report: Transgender high schoolers face mental health disparities
This month, the Centers for Disease Control and Prevention (CDC) released a report looking at transgender youth and mental health disparities. Among the key findings: In 2023, 3.3% of U.S. high school students identified as transgender, and another 2.2% as questioning if they are transgender.
The report, which used data from a nationwide survey of public and private high school students, represents the first nationally representative survey on transgender students. “The findings of this report suggest that more effort is necessary to ensure that the health and well-being of youths who are socially marginalized is prioritized,” the report states.
According to the CDC, transgender and questioning youth experience more violence, poor mental health, suicidal thoughts, and unstable housing. For example, about 26% of transgender and questioning students attempted suicide in the past year, compared with 5% of cisgender male and 11% of cisgender female students, the report found.
The survey also pinpoints striking disparities when it comes to school safety and bullying, with a quarter of transgender students reportedly skipping school because they felt unsafe.
While deaths are down, breast cancer disparities persist
The American Cancer Society’s 2024 breast cancer statistics, published in its flagship journal earlier this month, offers a trove of health disparity data for reporters.
The incidence of breast cancer continued a slight upward trend (1%), while the overall death rate maintained a steady downward trajectory. Between 1989 and 2022, the country’s overall breast cancer death rate declined by 44%, which represents more than 500,000 fewer deaths, according to ACS.
Within those trends, though, there are disparities by race that demonstrate the progress hasn’t been shared evenly. For example, mortality rates haven’t changed since 1990 for American Indian/Alaska Native women. Black women have a 38% higher mortality rate than White women, despite a 5% lower incidence of cancer.
The report sets the statistics amid the lingering after-effects of the Covid-19 pandemic, which interrupted routine and delayed routine breast cancer screenings. By 2021, mammography still had not returned to pre-pandemic levels and the long-term effects of these delays are still uncertain. One thing is clear, though: “Disturbances in care were greater and recovery slower in minoritized populations, which may further widen racial and ethnic disparities in breast cancer mortality,” report authors wrote.
Psychology Today offers an interesting post criticizing the “alarmist reporting” that followed the report’s release, some of which focused on small upticks in incidence rather than the steady decline in mortality. David Ropeik writes: “So the bad news about incidence is significantly offset by the reassuring evidence that breast cancer has become far more treatable.”
California will now report Indigenous Latino health data
In the wake of newly signed California legislation, the state’s Department of Public Health will now separate health data for Indigenous Latin Americans. Historically, Indigenous people from Latin America were grouped together in the broader Latino category, despite the fact that many people do not identify this way, explain reporters Jasmine Aguilera and Cassandra Garibay at El Tímpano.
The department will ultimately use the health data it collects on distinct Indigenous languages and nationalities in reports detailing health data and outcomes, including the leading causes of death and rates of major diseases. The hope is that collecting more data will help identify and address health disparities that may be obscured within the larger data.
What we’re reading:
- “Harris’ Emphasis on Maternal Health Care Is Paying Dividends With Black Women Voters,” by Stephanie Armour, KFF Health News
- “1 in 3 U.S. students experience racism at school: It's affecting mental health,” by Eduardo Cuevas, USA Today
- “How AI ‘twins’ could help fill women's health gap” by Megan Morrone, Axios
- “Black health and civil rights advocates rally against Georgia abortion ban after two mothers' deaths,” by Meimei Xu, WABE
- “Cash shortages and complex rules impede Native American health-care access,” By Arielle Zionts and McKenzie Beard, The Washington Post
- “How the end of federal abortion rights hurt LGBTQ+ parents,” by Orion Rummler, The 19th News
- “Medical debt snares millions of people. States, red and blue are passing laws to help,” by Noam Levy, KFF Health News
Upcoming News from the Center for Health Journalism:
In this webinar, we’ll examine the challenge facing many Americans when trying to access mental health care through commercial health plans, ask why these problems are so stubbornly persistent, and explore what can be done to lessen the gap between physical and mental health care in this country. We’ll also share story ideas and strategies, since these barriers to mental health care exist in every community. Register here!