Justice in terms of health and healthcare is systemically denied on the basis of race and ethnicity, income, gender, age, ability, orientation — that much is clear. What isn't as widely understood is how tightly health disparities, especially around HIV/ AIDS in the US, are tied to one issue in particular: Housing.
Jason Rosenberg, a national organizer at Housing Works and ACT UP NY member, told me that findings from a 2016 study support what organizers have long known anecdotally: safer, more stable housing is correlated with better access to healthcare, stricter adherence to antiretroviral therapy and longer lives. "There is no ending the HIV/ AIDS epidemic without ending homelessness," he explained to me via email. "Housing is healthcare, and as we should know, healthcare is a human right." Policy that protects low-income communities from housing insecurity — particularly queer youth experiencing homelessness — in turn lowers HIV/ AIDS seroconversion and transmission rates. "If your HIV prevention strategy does not include ending homelessness, it is not an HIV prevention strategy."
Troubling, too, is how endemic varying degrees of homelessness actually are among youth. According to a 2017 study of 26,161 youth and young adults, one in 10 adults between 18 and 25 experienced a form of homelessness between 2016 and 2017. Gradations of homelessness ranged from couch surfing with friends or family to sleeping in shelters or on the streets. Black youth were at an 83% higher risk for homelessness; queer youth at a 120% higher risk. Dana White is a program officer at True Colors United, and their work revolves around housing queer youth. "Housing is crucial to HIV prevention," they told me via email. "For LGBTQ young people experiencing homelessness, as they do disproportionately, it's common they're having to survive in ways that pose greater risk to their sexual health and safety."
One recent policy change from Gilead Sciences — who produces the only two medications approved for use as PrEP, Truvada and Descovy — is a key concern at Prep4All, a by-patient, for-patient organization fighting to secure universal access to HIV medications for all. In short, it concerns which state you live in.
Kenyon Farrow is the managing director of advocacy and organizing at Prep4All. "Right now, one major catastrophe we're headed toward is that [Gilead's policy change] will mean clinics in states that didn't expand Medicaid will lose huge sums of revenue, which will make it more difficult for uninsured folks in those states to access PrEP," he says. "This means largely Black and Brown folks in states [including] Texas, Florida and Georgia, which have huge populations and lots of LGBTQ folks" — approximately 1.3 million people between all three states identity as LGBTQ, per Gallup's state-level estimates from 2012 — "will be thrown off PrEP in just two months." Farrow went on to say that if Medicare doesn't expand in the impacted states; if the CDC doesn't allow clinics to use grant money for PrEP services; if a national PrEP program isn't quickly put in place to outweigh the shortfall: "We're definitely going to see HIV rates spike in some of the most impacted communities as it is."
What's especially infuriating about this probable spike in HIV rates is how completely unnecessary it is, given how effective the drugs themselves are. I should know: I was a test subject in HPTN 083, the first study to compare the efficacy of a long-acting injectable drug called Cabotegravir against daily oral PrEP in 4,570 men who have sex with men (MSM) and trans women. I volunteered in Harlem, but other testing sites were erected in Argentina, Brazil, Peru, South Africa, Thailand and Vietnam. In short, Cabotegravir is nothing short of miraculous, considering how far we've come since 1981: the injections I received were 89% more effective at preventing HIV infections than Truvada, and only needed to be administered once every eight weeks.
"If your HIV prevention strategy does not include ending homelessness, it is not an HIV prevention strategy." —Jason Rosenberg, national organizer at Housing Works and ACT UP NY member
Between the HIV Vaccine Trials Network and the AIDS Clinical Trials Group, medicine has advanced far beyond our cultural imagination of HIV/ AIDS science in the US — much less abroad, where adult HIV/ AIDS prevalence exceeds 19% in African countries including Eswatini, Lesotho, Botswana and South Africa, per the CIA. Just last week, a one-dose HIV treatment — possibly a cure — was approved for human trials. If drugs like Cabotegravir were readily available to all, HIV/ AIDS could conceivably end: Cabotegravir both prevents and treats HIV, but is only FDA-approved to treat at press time. Prevention would be revolutionized.
But in 2021, the efficacy of drugs isn't the problem anymore: access is. Truvada costs just $6 a month to produce: Its development was almost entirely paid for by US taxpayers. And yet, Gilead sells it back to us for 266 times more at $1,600 a month. Where is the justice in that?
Dr. Diana G. Finkel is an assistant professor and director of the Infectious Diseases Fellowship program at Rutgers New Jersey Medical School. Her legacy of care makes her something of an unsung saint: 16 years addressing health disparities in marginalized populations. Having coordinated community care for marginally housed queer youth, immigration detainees and people who use drugs, she explained to me what her work as both a healthcare provider and a principal and co-investigator in HIV clinical trials has taught her about the correlation between meeting material needs and ending HIV/ AIDS. "Safe housing, income, and access to healthcare services and unemployment benefits for everyone — without discrimination due to age, legal and socioeconomic status — would greatly improve our ability to end the epidemic," she told me. Status-neutral healthcare around HIV can help doctors instill confidence and trust in patients, she said, but whether patients seek care at all is another question entirely. "Individuals who are not housed, have no income and have food insecurity will not prioritize HIV prevention or care over immediate survival needs."
Over the past week, I've posed one question to everyone interviewed for this piece: "What does the future of HIV prevention look like in your eyes?" Between them all, the answers that emerged brought into focus the kind of world I want to live in: A world within our reach.
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"In the promising direction we're headed now with HIV prevention tools, there's still the issue of access," White explained. "This is where targeted universalism in care and prevention is key. If it's accessible and effective for the homeless, Black, trans, young person, then it will be for the middle class white gay man with his private insurance." Rosenberg echoed them and reiterated the importance of culturally competent healthcare: "It is equally important that we ensure that [people living with HIV] and communities that are at greater risk to seroconverting are living well. This includes creating equitable PrEP distribution models across the country, safeguarding treatment access, and making sure that the science behind U=U — (or, Undetectable = Untransmittable) — is easily accessible."
"Prevention needs to be normalized into routine care everywhere and into all healthcare conversations," Dr. Finkel explained. "Black and Latinx MSMs and members of the trans community should be able to access PrEP — both oral and injectable long-acting — at venues outside traditional office settings, such as pharmacist-prescribed PrEP, mini-clinics, college health centers, high school clinics and through telehealth." The ability to access PrEP "in their own space and time," she said, would remove barriers for many young people. Reflecting on the efficacy of PrEP in relief with the inefficacy of healthcare systems to deliver it, Farrow called its lack of implementation "a total failure, especially for Black and Brown folks."
Still, he has hope. "I am excited by new long-acting options for PrEP coming down the pipeline, which will make staying on PrEP easier for some folks as well as removing the stigma of having a bottle of pills," a surefire win in terms of access. "But, I am afraid that if we don't make PrEP affordable with as few barriers to entry as possible, we will see another 10 years go by with our goal of ending the epidemic [amounting to] no more than hollow promises."
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Story by Kobi Naseck / Photography by Matías Alvial