What if there were a pill, taken daily, that could drastically reduce your risk of contracting HIV? Barring an actual cure or fully preventative vaccine, it’s the holy grail in the fight against HIV/AIDS. It might surprise you to learn that it exists. It might also surprise you to learn that the FDA approved it for clinical trials almost four years ago.
The pill, distributed under its brand name Truvada, is a form of PrEP (pre-exposure prophylaxis). It’s similar to birth control in some respects. Taken daily, it drastically diminishes (by as much as 92 percent) the chance of contracting HIV after exposure to the virus. No serious side effects have been observed. Superficially, it’s a total triumph. But its use also serves to highlight issues of discrimination and difference in both the gay community and the queer community as a whole
Consider the way in which marriage equality was celebrated. Despite the fact that the ability to marry benefits a small subset (and disproportionately the subset in the least need of enfranchisement) of the queer population, it was lauded by many as the culmination of the gender and sexual non-normative movements.
This misguided sense of finality demonstrates the work that still needs to be done—in terms of both policy and societal acceptance. Queer people of color, gender non-conforming queers, undocumented queers, transgender men and women, low-income queers, and other marginalized members of the queer body remain at huge risk of disease and violence, despite the fact that #lovewins. Among these diseases is HIV/AIDS, contraction of which has risen in black and Latino gay communities. Transgender women of color are drastically more likely to contract HIV than their white counterparts, and even they are drastically more likely to contract it than other members of the queer community.
The queer community is very much divided along these lines. Race, income, masculinity (or lack thereof), documented status, positive/negative status, and gender identity all act as potential bases for discrimination, both inside the community and by others acting upon it.
How do these divisions manifest themselves in healthcare in the pursuit of medications like Truvada?
Though out-of-pocket the pill costs as much as $13,000 per year, most insurance covers it (both private and public). There are even commercial medical assistance programs to help low-income or uninsured people get coverage for it. So, in theory, marginalized members of the queer community have access to it.
So, why aren’t many of them taking it?
The first reason is navigating the complexities of the health care system. Familiarity with the jargon of the industry is paramount to proactively seeking Truvada treatment. Words like copay, coinsurance, premiums, and deductibles form a vocabulary necessary for pursuing treatment. As a result, successfully negotiating this system presupposes confidence in dealing with physicians and drug company representatives, indicators of a certain degree of affluence.
Affluence often implies a life with regular visits to the doctor, and this results in a more comprehensive understanding of the right questions to ask regarding health, to whom these questions should be asked, and an understanding of the terminology that is necessary to ask these right questions. It’s also important to remember that large subsets of low-income communities only gained health insurance with the passing of the Affordable Care Act. Essentially, these people are new to the system, one that wasn’t “for” them until recently.
More insidious is the way in which queer people are discriminated against in dealing with the healthcare system (private doctors' offices, public clinics, LBGT clinics, student health services, the ER). Queer people, especially queer people of color and transgender men and women, report instances of discrimination and substandard care at extremely high rates. This discrimination takes many forms: verbal abuse directed at the patient’s queer identity, an unawareness of queer healthcare needs, outright refusal of care, to even in some cases physical roughness or abuse. A study by Lambda legal found that 51.8 percent of trans/gender non-conforming respondents fear that they will be refused care if they attempt to access health care. In the same study, 25.9 percent of trans/gender non-conforming respondents of color have experienced verbal abuse by their medical professional. Lambda Legal also acknowledges that their survey respondents were “somewhat more privileged than the LGBT population as a whole (in terms of income level, education level, and access to health insurance),” and that as a result, the degree of discrimination and substandard care is likely understated for the LGBT community as a whole.
These reasons, combined with other barriers, like documented status, language proficiency, lack of familial support, make it objectively more challenging for marginalized queer people to get medical care. The discrepancy in PrEP coverage is a product of a healthcare system that does not accommodate nor support queer people, especially those of coverage.
To fix these tragic issues, we need to better equip healthcare professionals to understand the backgrounds and difficulties faced by marginalized members of the queer community. Cultural competency and sensitivity training are vital to the effort to better serve those that the healthcare system has disenfranchised. We need legislation that requires that all health care facilities that receive government funding implement these staff education programs. We need to continue to spread awareness of drugs like Truvada and their accessibility in communities that are disproportionately uninsured or otherwise underserved by the healthcare system. We need to continue to critique mainstream queer rights organizations on their priorities, encouraging them to pursue issues that—if remedied—would benefit the most disenfranchised members of the queer community, not just the ones closest to “mainstream” status. On a broader level, we need to continue to attack the systemic biases that are the root of discrimination and substandard care: racism, homophobia, transphobia, and classism.
Spencer Campbell PO '19 is an intended history major from New Rochelle, New York. He enjoys hiking, queer politics, and Frank Ocean.