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When pharmacist Ruth Madievsky decided to specialize in HIV/AIDS care, she didn’t realize how important it was to know the stories of those who came before her.
I joined Twitter mostly to connect with other writers and enjoy the lobotomizing bliss of a perfect meme. For a while, my bio was just a list of publications and a link to my website. Then, in 2018, I received my HIV pharmacist credential and helped create an inpatient HIV pharmacist service at my hospital. I decided to add “HIV pharmacist” to my bio. That’s when the messages started coming. People from all over the country began reaching out, asking for help. Occasionally, these were clinical questions, but mostly, they were about how to pay for medications. When I first started getting these messages, I had a couple thousand followers. People weren’t asking for help because I was a “big account” or had insider knowledge on insurance workarounds. They were reaching out to me, a complete stranger, because the health care system had failed them.
On the other side of that cynicism is awe.
One of the first messages was from a man living on the East Coast who’d been quoted an outrageous copay for pre-exposure prophylaxis (PrEP), a once-daily medication that reduces the risk of getting HIV through sex by 99 percent and through injection drug use by 74 percent. Even with insurance, his annual cost was thousands of dollars. If he couldn’t find a way to reduce the cost, he wouldn’t be able to get on PrEP, he told me. I sizzled with rage reading his message. PrEP should be free for everyone, period. Restricting access is morally bankrupt, not to mention completely illogical from a public health perspective. And yet, despite PrEP clinical trials being almost fully taxpayer funded, the arcane logic of our health care system has kept PrEP incredibly underutilized (as of 2019, only about 1 in 5 people who could benefit from PrEP had received a prescription). Even as I write this years later, after the federal government has mandated insurers to cover PrEP at no cost, some insurers are still in violation of this rule. And that doesn’t even begin to address the hurdles faced by the uninsured.
They were reaching out to me, a complete stranger, because the health care system had failed them.
I wanted to help this man, but I didn’t have an answer for him. My HIV pharmacist training was all clinical; I could manage drug interactions and resistant mutations, but no one had taught me how to handle medication access issues within my own state, let alone across state lines. I did a deep dive on patient assistance programs, manufacturer coupons, and national- and state-funded grants. It was confusing as hell. Navigating the esoterica of these programs felt like it necessitated a second doctorate degree. Eventually, I cobbled together a resource list for free or low-cost PrEP in his state. I was happy to perform this service and assumed it was a one-off thing. But not long after, I got a similar message from someone else.
We were taught how to medically manage HIV, and that’s about it.
The more I tweet about HIV/AIDS, the more messages I get. I get texts sometimes, too, from friends who have friends who need help. It’s shifted the way I think about my role as a health care provider and about how we educate clinicians-in-training. In pharmacy school, our few lectures on HIV/AIDS were devoid of historical context beyond a handful of grim statistics and the dates in which different antiretrovirals were released. We were taught how to medically manage HIV, and that’s about it. We weren’t told that the CDC’s definition of AIDS largely excluded women until 1993 or that marketing campaigns for PrEP have mainly advertised to queer white men and ignored communities of color, trans people, and women. We weren’t told that former president Ronald Reagan’s then communications director, Pat Buchanan, claimed AIDS was “nature’s revenge on gay men,” or that more than 20,000 Americans died before Reagan began to address the epidemic, after years of refusing to even utter the word AIDSin public. We didn’t learn about ACT UP, the grassroots political coalition largely responsible for putting pressure on the government and pharmaceutical companies to find treatments for HIV. No one told us about political funerals, about activists scattering the ashes of their dead loved ones across the White House lawn. We weren’t taught that most of the 700,000 people who died of HIV/AIDS in the United States were queer men of color who succumbed to state-sanctioned neglect.
The more I learn, the angrier I get about everything schools are not teaching young clinicians.
Sure, it would be challenging to cram four decades of mass death and coalition activism that forced the hand of an indifferent government into four hours of clinical pharmacology lectures. But basic history about how people with HIV desperately and strategically fought for effective treatments, and the challenges they continue to face today, should be the bare minimum. The more I learn about HIV/AIDS through literature and art, and from listening to people within the HIV/AIDS community, the angrier I get about everything professional schools are not teaching young clinicians.
Why become a health care provider if you aren’t invested in advocating for your patients?
In his essay collection, How to Write an Autobiographical Novel,writer and activist Alexander Chee wrote, “Understand that those of us in my generation who lived in San Francisco had to overcome the false impression that no one like us had ever existed before, because the ones who might have greeted us when we arrived were already dead.”
Can an HIV specialist address someone’s medical concerns without understanding this? Can they care for their patients without knowing what author and ACT UP member Vito Russo meant when he declared at ACT UP’s 1988 Department of Health and Human Services rally, “If I’m dying from anything, I’m dying from racism. If I’m dying from anything, it’s from indifference and red tape. … If I’m dying from anything, I’m dying from the fact that not enough rich, white, heterosexual men have gotten AIDS for anybody to give a shit. … Living with AIDS is like living through a war which is happening only for those people who happen to be in the trenches”?
Possibly. But why become a health care provider—and why specialize in HIV—if you aren’t deeply invested in understanding and advocating for your patients? This isn’t a rhetorical question. I literally ask my students this. Like me, most of them weren’t taught about ACT UP. Their HIV/AIDS knowledge comes primarily from medical lectures and films like Dallas Buyer’s Club and Philadelphia, which misrepresent or poorly contextualize the AIDS struggle. As Sarah Schulman wrote in her remarkable new book, Let the Record Show: A Political History of ACT UP New York, 1987-1993, “For decades the corporate cultural apparatus favored works—both creative and journalistic—that made straight people into the heroes of the crisis.”
I don’t want anyone to progress in their clinical training without knowing our country’s history
There are no quick-and-easy sources for getting students up to speed, as historical retellings of the AIDS crisis are understandably full of holes. They rely on the testimony of the living and can go only so far in speaking for the dead. David France’s stirring 2012 documentary, How to Survive a Plague, attempts to correct the record, but it focuses nearly exclusively on the white gay men in ACT UP whose indispensable contributions helped move the needle on AIDS justice. Schulman’s book challenges this version of events by highlighting the ways ACT UP’s incredible gains were achieved not only because of these men, but through the labor of a diverse coalition of activists, many of them women and people of color. Because the most marginalized members of the movement were the least likely to survive long enough to be interviewed for her oral history project, Schulman herself admitted, “Their full impact on the movement cannot be accurately assessed.” Even with the best intentions, each relitigation of AIDS history seems primed for its own historical corrective someday.
If professionalism means not talking about the ways our health care system is broken, who benefits?
This is a lot to pack into a short clinical rotation or a one-hour hard science lecture. At minimum, I try to provide a brief history lesson and a reading list. I don’t want anyone to progress in their clinical training without knowing our country’s long and ongoing record of treating people with HIV shamefully, how drug manufacturers and insurance companies gate-keep health care, and how these issues intersect with race, class, gender, and sexuality. Students are often surprised by how political the conversation gets. It doesn’t fit with what their training has taught them about “professionalism.” That breaks my heart too. Professionalism is useful in the sense that I don’t want my gynecologist to smoke a cigarette with one hand while giving me a Pap smear with the other. But when professionalism means not talking about the ways our health care system is riddled with racism, homophobia, transphobia, and misogyny, who benefits from our silence? Certainly not the patients we swore an oath to protect.
I tell my students that we have a moral obligation to speak openly about unethical practices and disparities within health care. I can’t guarantee they won’t face pushback for it, but I do think standards are changing. I’m seeing a lot more health care providers publishing scorching pieces about the social ills plaguing our profession. Last summer’s #MedBikini saga, in which the Journal of Vascular Surgery was obliterated on Twitter for publishing a study in which researchers created fake social media profiles to assess “the prevalence of unprofessional social media content among young vascular surgeons,” led to the article’s retraction and to thoughtful public conversations about how “unprofessional” topics like abortion, gun control, and LGBT rights are deeply relevant to public health.
Don’t specialize in HIV if you’re not willing to have these conversations, I tell my students. If you won’t fight for your patients, or even name the forces oppressing them, pick a different specialty (and consider why you went into health care in the first place). No, your employer won’t give you admin time to read Let the Record Show,nor will you be materially rewarded for doing so. Yes, the more you educate yourself on the history of HIV/AIDS, the more cynical you will become. But on the other side of that cynicism is awe. You will be awed by the way people have cared for one another under the darkest conditions and the incredible gains collective organizing has ushered in. Learn from and honor their struggle. Understand that, globally, the AIDS epidemic is far from over and that in the United States, this is particularly true for Black and Latino men who have sex with men, for transgender folks, for people living in the South. Make addressing barriers to health care an integral part of your professionalism. Do the kind of work that eliminates the need for your patients to ask random health care providers on social media for help.