Health Disparities In Real Life
By Adrian Shanker
Cover of Bodies and Barriers: Queer Activists on Health by Adrian Shanker.
Phrases like “health disparities” sometimes sound scientific, research-focused, or even worse: clinical. But for queer people it’s not just research jargon, it’s our lived experiences. And it’s personal.
I’m a full-time LGBT community advocate and the founder of an LGBT community center in Allentown, Pennsylvania. I’ve been engaged in LGBT advocacy for 15 years. But I wasn’t always passionate about LGBT health equity. I didn’t really understand the inequity until 2015 when my organization received a grant to measure LGBT health disparities in Pennsylvania. In partnership with the Pennsylvania Department of Health, we collected data to measure the health challenges our community was experiencing. I assumed there would be some differences between LGBT people and the majority population, but the results were shocking to me: LGBT people experience health disparities across the board, affecting every part of our body and every part of our lives. Compared to the majority population, LGBT people experience higher rates of chronic diseases and cancer risk paired with lower rates of routine screenings and satisfaction with healthcare. In 2018, we re-administered the needs assessment with 4,700 LGBT Pennsylvanians participating. The same results were confirmed. Houston, we have a problem was all I could think about as I pored over the data, trying to make sense of what to do about it.
Why is it that LGBT people consume tobacco at double the rate of the majority population? that LGBT people assigned female at birth are not receiving cervical Pap tests as regularly as cisgender heterosexual women? and that so few LGBT people have a primary care doctor? It’s not random. As Liz Margolies of the National LGBT Cancer Network writes, “This is what health disparities look like in real life. […] Please don’t pull out that inaccurate trope that ‘cancer doesn’t discriminate.’ I’ve heard it way too many times, and I’ve lost my patience with explaining. Yes, rogue cells are rogue cells, but we cannot tease out the lives of the errant cells from the social conditions in which the whole body lives.”
LGBT people experience health disparities because of social and cultural experiences with discrimination, violence, and harassment. These stressors lead us, as a community, to engage in higher-risk behaviors. Huge numbers of us have had negative past experiences in healthcare settings that make us lukewarm, at best, about going back for even routine tests, such as cancer screenings. So the health disparities we experience are not surprising. They are the result of receiving care through systems that weren’t made for us.
As a result, LGBT people experience HIV and cancer incidence at increased rates. During the COVID-19 pandemic, health disparities leave us with additional vulnerabilities for infection with the dangerous virus. The California Department of Public Health (CADPH) has well established the problematic link between smoking and COVID-19. First, smoking doubles the risk of contracting respiratory infections. Then, if infected, smoking doubles the risk of getting even sicker from COVID-19. This finding has been backed up by five research studies, including one that was published in the New England Journal of Medicine that says that smokers are 2.4 times more likely than non-smokers to get really sick from COVID-19.
So what do health disparities feel like in real life?
Alisa Bowman writes about navigating pediatric care for transgender youth: “During several doctor’s visits, I’d even mentioned telling signs — how my child refused to go to the bathroom at school, for example. There had been plenty of openings. Yet our pediatrician never once asked us questions about our son’s gender nor suggested that our child might be trans. It was akin to treating a child with high blood sugar and never once saying anything to the child’s parents about type 1 diabetes.”
And Sean Strub writes about challenging HIV stigma: “today when a newly diagnosed person is given this life-changing news, they are put on treatment, told to come back in three months, and ejected onto the sidewalk, expected to go about their lives as if it was no big deal. Yet, HIV stigma makes many of us reluctant to share this news with our friends and families.”
In real life, health disparities feel like a door being closed. It feels like the invalidation of our identities. It feels like what clinicians call barriers to care. During a pandemic, these barriers to care are especially dangerous. Compared to the majority population, far fewer of us have an existing relationship with a primary care doctor. If we start experiencing COVID-19 symptoms, who are we going to call? The answer can’t be ghostbusters.
The problem for us LGBT people is that these barriers are all around us. They are hard to escape, perhaps especially for those of us living outside of major metropolitan areas.
So, what do we do to eradicate these health disparities? There are really three answers: behavioral changes, clinical changes, and policy changes.
Behavioral Changes: The LGBT community has always been our own healthcare advocates. The lessons from the early HIV/AIDS activists are but one example. We cannot wait for the government, health insurance companies, pharmaceutical companies, and health care networks to prioritize our health. We can instead take our health into our own hands. We can do this by increasing risk awareness and educating ourselves and others about risk-aware decision making. We can do this by reminding each other to receive our routine screenings.
Clinical changes: Healthcare professionals need to better accommodate LGBT patients. Far too often, LGBT patients are asked to teach their doctors about their own health needs. This is never appropriate. Clinicians need to learn about the healthcare LGBT people need and provide medically relevant care to us in culturally responsive settings. There are many opportunities for continuing medical education in LGBT health, and affirming clinicians will take advantage of these learning opportunities. Clinical spaces can also improve. This includes making sure that intake forms are not unnecessarily restrictive, that waiting rooms are welcoming and friendly environments, that clinicians ask us about our bodies and lives, and that they do so in respectful and authentic ways.
Policy changes: From health insurers declining coverage of testosterone for transmasculine clients to government regulators allowing the internal condom to go “prescription only”, policymakers can also do much better when it comes to LGBT health. First, they can ensure that health equity is the starting point when crafting any health policy. Regulations and guidances covering discrimination in healthcare need to include LGBT people. During this pandemic, policymakers need to ensure that LGBT demographic data is being collected regarding COVID-19 diagnosis, hospitalizations, and mortality. As activists, we can remind policymakers at all levels – from school board members to federal legislators, from health insurance regulators to health network administrators – that the policies they make have a profound impact on LGBT people in their communities.
The healthcare system is currently being pushed to its limits and is broken for many Americans, but for LGBT people this broken healthcare system is leaving our queer bodies behind. In place of marching in the streets this year as we normally march for pride and liberation, let this be the year we demand health equity: the attainment of the highest quality of health for all people and the eradication of the health disparities that shorten LGBT lives. Because without our health, we don’t have our pride.
Excerpts in this article are from Bodies and Barriers: Queer Activists on Health, available wherever books are sold!
Adrian Shanker is editor of Bodies and Barriers: Queer Activists on Health (PM Press, 2020), a new anthology of essays by 26 queer activists from around the world. He is also executive director of Bradbury-Sullivan LGBT Community Center in Allentown, Pennsylvania.