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Personal Story

I Couldn't Get PrEP, and Now I'm Living With HIV

November 27, 2017

I'll never forget the day I discovered that I had HIV. It was a Monday, last October. I'd recently moved to San Francisco but was in Los Angeles for work when I got the call. The voice of the case manager on the other end sounded shaky, like he felt sorry for having to tell me something so important over the phone. My head swirled. How could this happen?

The thing is, I consider myself a knowledgeable person on the subject of HIV prevention. I practice harm reduction in my personal life, volunteered at the Berkeley Free Clinic when I was in college, and even worked on a campaign with Centers for Disease Control and Prevention (CDC) last summer called, "Start Talking. Stop HIV." As a queer man of color, I'm aware that I fall into a high-risk category for HIV infection. It's an issue that hits close to home.

Two days after getting the news, I went to San Francisco General Hospital to participate in a medical study of people with early stage HIV. The case manager I'd spoken to on the phone had recommended that I go. I was uninsured at the time, and he explained that this was one way I could get free medications and treatment. As I sat in a waiting room, I couldn't stop repeating to myself: "This could have been avoided. This could have been avoided. ..."

Yes, I could have worn a condom, but I believe in harm reduction, and the notion of wearing a condom is almost as oppressing as abstinence. I always have open communication with my lovers, and if folks want to wear a condom, I respect that. Aside from open communication, I'd been taking other precautionary measures that made me think I didn't need to. I'd been using Truvada (tenofovir/FTC), an HIV prevention pill also known as PrEP (pre-exposure prophylaxis), that's been proven highly effective. The drug has been U.S. Food and Drug Administration-approved since 2012, and I started taking it in 2015. At the time, I was unemployed and didn't have health insurance, so my supply came from friends who had prescriptions and, on several occasions, from a former partner who was in the "bottle business," selling HIV meds on the black market. For nearly a year, I managed never to miss a dose.

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Then, in early 2016, my connections dried up. At first, I tried getting PrEP through Medi-Cal, but the enrollment process took way longer than I expected. After waiting several months for the government insurance to kick in, I turned to the Los Angeles LGBT Center for help, but I was told that they couldn't write me a prescription unless I had insurance. Even then, I was told, it could take up to another month to get the medication. I thought paying out of pocket might be an option, until I learned that PrEP would cost me $1,500 per bottle. I felt as if my access to this potentially life-saving medicine was being stalled by bureaucratic hoops, and not even the largest LGBT center in the world could help me if I didn't have health insurance.

Meanwhile, acting on word-of-mouth information about how long PrEP stays in the body, I'd continued having unprotected sex for about two weeks after my last bottle of Truvada ran out. Taking advice from non-professionals was a huge mistake and gave me an overinflated a sense of security. In that respect, having access to a doctor who could give me accurate information about PrEP would have certainly helped.

Unaware that I'd likely already been exposed to HIV, I began telling white lies to the eligibility workers at the LGBT Center to get the medicine. I knew that if I told them I'd been exposed, they would give me a 30-day treatment consisting of Truvada and a smaller pill called Tivicay (dolutegravir). The people at the Center told me that they would do this for me only once and that I should try to get insurance as soon as possible, which is exactly what I was trying to do.

As part of the agreement, I had to check in with a counselor at the Center, who proceeded to tell me that I was being "reckless." The word felt like an admonishment, when all I was trying to do was protect myself. This wasn't the first time I'd felt stigmatized by a medical provider. Several years ago, I had to argue with a doctor at Kaiser Permanente to convince him that I should get tested for sexually transmitted infections every six months, as opposed to the yearly testing he recommended. These interactions made me feel disposable, as if my life wasn't valuable enough to justify the resources I was seeking to protect myself.

Reflecting on these experiences over the last several weeks, I began to wonder whether other people had similar difficulties getting PrEP or felt stigmatized in the process of doing so. I spoke to one queer man of color, Marvin, who said he was denied PrEP on two separate occasions at his university health center. The first time he was told he couldn't get a prescription because he didn't meet their criteria for being "high risk," which, according to Marvin, essentially amounted to being a sex worker, which he is not. Marvin said the second time a provider at the center wouldn't give him PrEP it was because they feared he would then stop using condoms altogether. His narrative resonated with me as another example of a health provider, consciously or not, attempting to regulate the sex life of a queer man of color, as if we couldn't be trusted to do so ourselves.

Recent studies suggest that my and Marvin's experiences aren't all that rare. Despite the fact that PrEP is now widely accepted as an effective HIV-prevention method, only a fraction of the people who need the drug are getting and using it. A CDC survey found that 68% of American gay men knew about PrEP in 2015, and 50% said they would use it. Yet, only 4.9% had actually done so. To take it even further, studies show PrEP users are disproportionately older, white men. A 2014 CDC survey of over 400 gay and bisexual men in San Francisco, for example, found that whites were five times more likely to use PrEP than Latinos, and four times more likely to use PrEP than men of color as a whole. According to an article in Poz Magazine, Gilead Sciences, the maker of Truvada, estimated that only 9% of all prescriptions filled were for black men -- a shabby figure when you consider that black men in the U.S. accounted for 45% of HIV diagnoses in 2015.

Government medical experts have said that PrEP's effectiveness is no longer in doubt and have called on medical providers to expand high-risk patients' access to PrEP. This gradual growth in awareness has led PrEP usage to increase overall, but it still isn't getting into the hands of those who need it the most, for a variety of reasons. One is that racial biases and assumptions held by medical providers, although difficult to measure, are real and can impact clinical decisions, including whether or not a patient is prescribed PrEP. One study showed that providers assumed that, if prescribed PrEP, black men would be more likely to increase condomless sex; therefore, providers were less likely to prescribe PrEP to black men than white men.

Another barrier is cost and the relative scarcity of PrEP programs for the uninsured. In doing research for this piece, I learned that even in San Francisco there are only a couple of ways to get free PrEP if you're uninsured: through a patient assistance program sponsored by the pharmaceutical company Gilead, and through a city program that allows uninsured youth under the age of 24 to get free PrEP at two participating youth clinics in the city. The main problem with each is that there isn't nearly enough awareness that they exist, and that's true for clinicians and potential consumers.

I wrote to Miranda Nordell, a PrEP coordinator at the San Francisco Department of Public Health, and asked what could be done to make PrEP more readily available. She confirmed that PrEP training for primary care providers and pharmacists is a big need, and that "costs associated with the medication can be a significant deterrent for folks, and that is likely in part due to a lack of knowledge about various assistance programs." She also wrote that, "[i]f we want to get to zero new HIV infections, we really need to start offering PrEP more widely to young adults under the age of 18," and suggested that PrEP education be a part of every high school and college sex education curriculum.

The good news is that things are trending in the right direction. Infection rates are on the decline. With every advance in HIV prevention and treatment, the stigma surrounding HIV positivity is reduced. But things aren't moving fast enough for queer people of color, who are still stigmatized. Our sexual freedom is both non-existent and hyper-existent. The stereotype of men of color as hypersexual persists, and it manifests in nuanced ways: in medical practices, policies, and gatekeepers that police our bodies. These attitudes, coupled with inadequate health education and resources in our communities, bring consequences. In 2016, the CDC released data showing that, if current rates persist, 50% of black and 25% of Latino men who have sex with men will contract HIV within their lifetime.

PrEP has proven effective at preventing HIV infection, and there is simply no acceptable reason why anyone, least of all queer men of color, should be denied access to it. It's time for PrEP to be made widely available to anyone who needs it, regardless of skin color, sexual practices, or insurance status.

Giuliani is a UC Berkeley alumni who double majored in English and Gender & Women's Studies. He is a Sidley Austin Pre-Law Scholar and wrapping up his two-year clerkship with Munger, Tolles & Olson before he begins law school.


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