In 2020 and 2021, the research, development, and distribution of vaccines for COVID-19 unsurprisingly held a tight grip on the media spotlight. Meanwhile, waiting in the pharmacological wings was a widely anticipated long-acting antiretroviral therapy (LA-ART) for HIV, approved by the U.S. Food and Drug Administration (FDA) in January. The approval of Cabenuva (cabotegravir/rilpivirine), a first-of-its-kind, once-monthly injectable regimen, ushered in a celebratory new chapter in the development of HIV treatments that offer safe and effective alternatives to daily pills.
LA-ART also provides a simplified model of treatment that includes less frequent dosing and side effects common to any medical injection like pain and tenderness at the injection site, rash, fever, and fatigue. Despite the lifesaving impact of antiretroviral therapy (ART), some individuals using oral HIV medications may battle with the lack of privacy and stigmas associated with daily use. For autonomous adults, LA-ART provides a space for confidential administration outside the surveillance of family members, intimate partners, and coworkers.
Not a Panacea for Inequities in Access
Alongside the excitement for LA-ART lingers the disquieting inequities that appeared during the early days of AZT through the evolution of NRTIs and the expansion of NNRTIs. Black Americans have been disproportionately affected by HIV/AIDS since the epidemic’s beginning, and that disparity has deepened over time. While ART has helped millions of people living with HIV lead healthier lives, Black people living with HIV are more likely than other racial groups to postpone or discontinue medical care and become hospitalized. Add to that that in the U.S., Black people living with HIV have higher rates of virologic failure on ART and of death when compared to white individuals. As for Black women, we represent the majority—nearly 60%—of new HIV infections among U.S. women.
As we roll out Cabenuva and other LA-ART regimens, it will first be critical to examine the structural causes behind these disparities, from racism and stigma to lack of access to affirming health care and, in some cases, the prohibitive costs of these lifesaving medications. Health “equity” and “access” cannot be relegated to marketable phrases to be splashed in grant applications, hospital brochures, and on the Helvetica web pages of millennial start-ups. “Equity” and “access” movements, especially those geared toward HIV prevention and treatment, must make concerted efforts to reach the communities of Black women (cisgender and transgender) who are omitted from the conversation and lose their lives as a result.
If LA-ART is to become a tool for improving HIV treatment outcomes among Black women, it will require robust education, affordability, and widespread availability—and we’re not there yet.
To gain a better understanding of the access and other issues surrounding HIV care for Black women, I wanted firsthand accounts of what Black women had to say about LA-ART, because our voices are so chronically silenced. Through a series of deeply affirming and candid interviews, I learned about how the complexities of Black women’s socioeconomic, psychospiritual, age, national, cultural, and sexual identities affect how we survive and thrive with HIV—and their honest perspectives on this new HIV regimen and whether it might fit into their lives. These are not the kind of insights that can be pared down to easily digestible and scalable strategies; rather, they require frequent revisiting. I learned that in order to heal, Black women must form exclusive intimate communities made for us and by us.
Maneuvering Mental Health and HIV
Breona Pittman, Southeastern Transgender Resource Center Courtesy of the subject
Dali Adekunle: What is it about the state of mental health among Black trans women that endangers their HIV health success?
Breonna Pittman, senior manager at the Southeastern Transgender Resource Center in Norfolk, Virginia: It’s often unstable. You know the younger generation, you can’t tell them much, but I think that we can learn from each other. Personally, I help everybody because I don’t think I know everything, and I can learn from everyone.
A lot of the girls who started their transition sometimes don’t know right from wrong, but once they start going through it, going out in public, people staring, etc. some girls, mentally, aren’t ready for that. It takes a lot of building up your confidence to actually live in your truth, and many people think that this is a game when this is our lives.
So, we have to be mentally prepared. And when things don’t go as expected, then you’ve got to learn how to push through. Some girls don’t push through, they break. We even have to talk to girls about the side effects of hormone therapy. Depression is common. That’s another thing that people don’t know.
Adekunle: You’re so right: The conversation about side effects with HRTs (hormone-replacement therapies) and antiretrovirals isn’t as candid as it should be. There are really amazing highs and lows involved with all medications, treatments, and surgeries.
Pittman: Exactly. I had a botched surgery when I was young, and I’ve been having to live with what I did to my body. I tell younger girls who are excited about gender-affirming surgeries and SRS to not cut corners because I didn’t have anybody to guide me or the resources that they have.
Adekunle: You’re trying to bridge the education gap between generations.
Pittman: That’s why I tell my stories about being formerly incarcerated. That’s why I’m honest. Why make the same mistakes that I did, when the girls could just ask me?
We’ve had a few deaths within the community, with trans women being murdered or overdosing, and you’ve got to understand that frequent drug use is something you often deal with alone. A lot of what trans women see on TV and hear in the media about how they are treated prevents them from getting help with their drug use and definitely not with their mental health.
When you’re in such a bad mental state, taking your HIV medications isn’t a priority. Your priority is surviving or trying to find a little bit of happiness during your day. Your priority is not being killed by your lover. You’ve got to be in the mindset of wanting to take care of yourself because the denial can eventually hurt you, no matter what kind of treatment you decide to pursue.
Vanessa Apea, MPH, Queen Mary University LondonCourtesy of the subject
Vanessa Apea, MBBS, M.P.H., consultant physician in Sexual Health and HIV and honorary senior lecturer at Queen Mary University London, United Kingdom: Within the U.K., one of the developing standards of care that I find very powerful is integrating and connecting patients with peer mentors; i.e., people living with HIV supporting other individuals newly diagnosed with HIV.
As human beings, whatever we are living with, whatever is presently in our lives, we are shaped by and helps determine our sense of self. When you have a stigmatizing condition that many people will tell you is “bad” and will tell you is associated with something negative, it is easy to absorb and internalize that messaging. That is one of the wonderful things about the peer mentorship program—the direct acknowledgement of those stigmas. Just hearing, “I’ve been where you are,” “I know what you’re thinking,” “I know how you feel, but you don’t have to continue feeling that way,” is so impactful; and providers need to know about it!
We talk about “cultural competence” and “cultural intelligence,” but I think that the bulk of the responsibility relies on providers having some cognition of the potential lived experience of their patients and giving them the space to explore that lived experience.
Adekunle: Wow. I don’t remember many medical encounters that have allowed me that space.
Apea: In my HIV work, we use a pretty rudimentary tool right now that can definitely be updated, but essentially patients tick off a form if they have any housing insecurities, immigration problems, etc. It elicits conversation because it assists the provider in stating, “I recognize that you are originally from Zimbabwe; you’ve moved to the U.K.; you’ve got family abroad; you’ve got two kids. I recognize that you may have financial challenges. I recognize that you may have difficulties with disclosure of your HIV status to your family in Zimbabwe. I recognize that because of your immigrant status, you may have barriers to accessing your medications regularly.”
What providers can do is then meet patients where they are psychologically and tailor their care accordingly. An increase in treatment options is fantastic, but if this piece isn’t addressed, I don’t see LA-ARTs as changing the patterns of disparities that we already witness.
Breakthrough Medicine, but at What Cost?
Stella Safo, M.D., Mount Sinai and New York Academy of MedicineCourtesy of the subject
Adekunle: What needs to change in the way these new LA-ARTs are marketed to high-risk communities? What needs to change in the way pharmaceutical companies are saturating patient communities or even speaking to physicians about these new therapies?
Stella Safo, M.D., M.P.H., assistant professor of Medicine at Mount Sinai and New York Academy of Medicine Fellow, New York City: There are a couple of things that make accessing new HIV therapies difficult; one of them is the insurance approval process and payment. For any new medicine, most of the time, insurance companies will not carry it on their formulary, which is essentially a list from the insurance company that says, “Yes, you can get this old medicine because we cover it,” or “No, you can’t get this new medicine because we don’t cover it.”
An insurance company that has a high burden of HIV patients on it may choose, if there are other drugs that are non-inferior but cheaper, to not fund the payments of Cabenuva because of the increased price. However, a different insurance company that may have a more varied patient population may pay for it. So, unfortunately, it may come down to a payment issue.
Cabenuva is $5,940 for the first injection, right?
Adekunle: It is, with subsequent injections that are around $4,000.
Safo: Exactly, so the total yearly price is entering multiple digits. The point that I want to make is that I’ve seen successful ART rollouts when pharmaceutical companies have a coupon set up that bridges the cost delay between when the patient wants to access the new therapy and when it is put on the insurance formulary.
Adekunle: I don’t think that I’m following. Can you repeat that one more time for my understanding?
Safo: Sure. When you have a new medication that costs so much every single month, what happens is that the people purchasing that medication are individuals who are very wealthy or individuals who have concierge medicine and can self-pay. You also have those who have excellent commercial insurance that contain wide formularies who can access the new medication. Everyone else who has something like Medicaid, Medicare, or lower-cost health insurance plans are probably not going to get the new treatment covered, and it creates an immediate barrier.
What pharmaceutical companies can do is provide financial assistance to the population of people who may not be able to immediately pay for the new medication until the “popularity” of the medication allows it to be added to their insurance coverage.
The Way Forward Starts With Data
Kiara St. James, New York Transgender Advocacy GroupCourtesy of the subject
Adekunle: Kiara, I’m not looking for a one-size-fits-all kind of solution, but I’m ready to see a potential next step. What’s a way that we can move forward?
Kiara St. James, co-founder and executive director of the New York Transgender Advocacy Group, New York City: Dali, in order for us to center all Black women, we must first collect data—having focus groups, and asking Black women if they feel comfortable in spaces that are mixed, if they feel comfortable in spaces with Black health providers, if they have certain side effects to different treatments. Once we have the data, that’s when we’ll have the means to push back on white supremacist health care standards. I would love for Black women to be a part of a national survey. You know, I’m a part of the Black Women’s Health Imperative; it’s a CDC-based organization, but even that organization doesn’t capture all the data that we need.
Adekunle: Absolutely, we need the data set reflecting Black women’s realities to be larger.
St. James: That way, we will be able to reallocate funding into Black organizations. President Biden just approved a measure to improve HIV services, but who’s going to get the brunt of that money? It’s not going to be us. Most of that money isn’t going to be siphoned into Black-led organizations.
Adekunle: It feels like we’re living in a twilight zone, right? Especially since health equity and access are buzzwords but the majority of chief medical officers and health center leaders are not people of color.
St. James: Listen, there are nuances that exist within our Black communities, but Black people are the only individuals who are equipped enough to address those nuances. Yet, we’re the ones who do the bulk of the work but only get the crumbs from the table. I don’t believe in diversity. I don’t believe in inclusion. I believe in running us our money.
In order to allow space for Black people to participate in surveys and their health care, we need options. You know, I’m working on a UBI [universal basic income] bill with a senator who represents my area of Flatbush [Brooklyn], and I’ve been thinking about and talking about UBI for the past two or three years.
Adekunle: I completely agree. Black women don’t often have time to invest in their health care because they are too preoccupied giving their labor.
St. James: Exactly. There are 42 mayors, and they’re all either Black or Latino, who have created UBI pilot programs—and the data show that the programs have been quite successful. The data shows that folks have stopped working to go back to school, or they stopped working for a business and became entrepreneurs.
The system that we operate in has been teaching us to be consumers … not giving us the tools to contribute to our collective freedom … or healing.