Last fall, the MacArthur Foundation announced their annual “genius awards.” One name in particular stood out: Gregg Gonsalves, 55, an assistant professor of microbial diseases at the Yale School of Public Health.
In the 1980s, Dr. Gonsalves was a leading member of the AIDS advocacy group Act Up; he went on to found or support a number of domestic and international AIDS organizations.
The foundation cited his contributions in “training a new generation of researchers who, like himself, work across public health and human rights sectors, scholarly research, and activism to correct disparities in global public health.”
Writer and activist George M. Johnson instructs us, on National Black HIV/AIDS Awareness Day, on the role we all play in the
The late activist and writer Joseph Beam once deemed the act of a Black man loving another Black man a “revolutionary act.” I imagine that doing so, while also living unapologetically with HIV, is doubly insurgent. But that’s perhaps the only way to describe the life and work of George M. Johnson. A writer, activist, and soon-to-be author, he’s committed to the work of toppling the patriarchy, challenging anti-Blackness, and confronting homophobia, transphobia, and HIV stigma wherever he sees it.
With over 40,000 Twitter followers and a much larger community that reads his words at Teen Vogue,Entertainment Tonight, The Root, Ebony, and countless others, Johnson is outspoken and defiantly visible as a Black gay man living with HIV, with which he was diagnosed at 25. Now, he’s set on being the resource he wishes he had when he was younger for other folks who are or might become HIV positive.
On National Black HIV/AIDS Awareness Day, Out spoke to Johnson about his activism, the state of HIV advocacy, and what those living with the virus and those not can do to combat stigma.
The STD explosion has led to a debate over a possible connection since the introduction of the HIV prevention pill.
PrEP is not a cure for HIV, and it also is not 100 percent effective, but, taken as directed at the same time once a day, it comes pretty close — up to 99 percent successful in preventing HIV, according to Palmetto Community Care, formerly Lowcountry AIDS Services, in North Charleston.
The drumbeat of safe sex practices hasn’t changed among health officials. Abstinence, using condoms and being in a monogamous relationship are still the best ways to help prevent STD infections.
But the naked truth is people don’t always follow that advice.
“After they start taking PrEP, we don’t see a great shift in risk behavior,” said Aaron O’Brien with Roper Hospital’s Ryan White Wellness Center.
He puts condom users into two groups: those who use them regularly and those who don’t, and, based on his talks with patients, that doesn’t change much once they start taking the pill.
Adam Weaver, prevention program manager at Palmetto Community Care, agrees with O’Brien.
“What we are finding is that the people we are putting on PrEP aren’t changing their condom use,” he said.
They also don’t believe PrEP’s introduction, in and of itself, contributed to the explosion in STDs.
They say it has more to do with better reporting since people taking PrEP must check in with their doctor or provider every three months or so for regular testing.
The state of the HIV epidemic in the United States is a global embarrassment. Currently, we spend more than any other country per person on domestic HIV treatment, yet by almost every metric, our epidemic is worse than that of other wealthy nations. So why the discrepancy between cost and outcome? The problems are multifactorial, including systemic racism, classism, transphobia, and homophobia. Oddly enough, however, egregious price gouging by the pharmaceutical industry has gotten almost no attention, despite its central role in hampering America’s HIV response. High drug prices distort our nation’s fight against AIDS, forcing the health care system to pay massive markups to pharmaceutical companies and leaving relatively little for other vital services. As a result, we continue to line the pockets of pharmaceutical executives rather than addressing the broad social and environmental barriers to effective HIV treatment and prevention.
I remember the time when I was little, before I had a degree or the knowledge to verbalize that something was wrong: All I knew was the feeling of suffocating. Continually fighting to breathe, fighting to get through, fighting to wake up each morning.
I am not sure whether I was angry at nature or nurture. Whether I was angry at my inability to never fit in, to never seem to know how to shut up or just fold. My inability to accept a “yes” and just swim along the tides. Would HIV have been more bearable if I simply knew how to assimilate? I get a house with a white picket fence, monogamous sex, church three times a week, stay at home? Would it have been more bearable if I had known my mother, black HIV-positive woman, before she gave me up?
Why is that? Well, I think it’s because I didn’t grow up in a black household. My adoptive mother was a Boriqua queen who ran the house and the heart of my father (both were born and raised in Puerto Rico). I was black and, back then in 2000s when everyone my age thought being “Spanish” was looking like JLo or Pitbull, I wasn’t allowed to claim what my Afro-Latina stepmother did. (She often told me she was black, and once, that my white-passing father’s family did not want my caramel-toned stepmother in the family.) While I value her experiences, I needed to see other little black girls with Latinx last names and who loved merengue just as much as I did. There was no “Afro-Latina” then in the South Florida where I grew up. I had no right to be as proud of my parents’ culture as they were, although I was raised as stereotypically as you can get: loud bilingual momma, yuca and yellow rice on the stove, a mechanic father with plenty of machismo. There was no one to help me navigate the world as a black woman. Maybe my anger came because I understood things I couldn’t yet speak.
Stories of my biological mother are few and far between, pieced together and passed to me by the nursing staff of my former hospital in Broward County, where I was born in 1991. I know she was a woman living with HIV when there was inadequate treatment. I know she was black, a mother of at least nine children, dealing with drug addiction and HIV, and she never got to know me. I assume she used drugs because I was born with drugs in my system. I read my hospital report, which says that this beautiful black woman had more demons than I could ever come to understand. Before black spaces, I would have assumed she was doing drugs, running around sleeping with folks to fuel her life. Before black spaces, I would have read my chart and hated her more for passing so much onto me with little support — for making me deal with the so-much before I even learned how to walk. Truth is, black spaces helped me realize that she could only do as much as her chains would let her: I lived. I’m here writing and excelling. A black momma did that, not only did she, but with the weight of oppression on her shoulders. Mission complete. I think she did exactly as she was supposed to do with all against her.
The story was that she named me and that was it. Did she plan a name in the midst of her heightened addiction? Did she pray for forgiveness? To die? To separate from her blackness as I did? Was it her blackness that aided in her losing me to another momma? For a black women with HIV and children in the midst of drug addiction, police and jails and judgmental doctors and child protective services in the 1990s demonstrated a lot of disdain for her, her choices, and the children she birthed.
In light of the progress we’ve made over the past decades, it’s tempting to think that we are only steps away from a cure and that our previous advances will protect younger LGBTQ people for generations. While it’s empowering to feel confident in our current position, it is essential that we remember that all of this is fragile. According to a recent statistic from the Centers for Disease Control and Prevention, HIV and AIDS remain persistent problems globally. We’ve come a long way in preventing and treating HIV, but there is still much more to accomplish. Annual HIV infections and diagnoses are declining in the U.S., but progress has been uneven, and annual infections and diagnoses have increased among some groups. The declines can thankfully be attributed to targeted HIV prevention efforts, such as Truvada.
Truvada was approved by the Food and Drug Administration in 2012. But over six years later, the United States is failing miserably in expanding its use. Less than 10 percent of the 1.2 million Americans who might benefit from PrEP are actually getting it. The major reason is quite clear: pricing. With a list price over $20,000 a year, Truvada, the only PrEP drug available in the United States, is simply too expensive to become the public health tool it should be.
[…] The disparities in PrEP access are astounding: Its use in black and Hispanic populations is a small fraction of that among whites. In the South, where a majority of H.I.V. infections occur, use is half what it is in the Northeast. Women use PrEP at drastically lower rates than men, and while there’s no national data on PrEP and transgender Americans, it’s almost certainly underused. The issue of PrEP access has become an issue of privilege.
The ability of PrEP to greatly reduce new H.I.V. infections is no longer in question. In New South Wales, Australia, a program providing free access to PrEP led to a drop in H.I.V. diagnoses in the most vulnerable communities by a third in just six months, one of the fastest declines recorded since the global AIDS crisis began.
Research shows a strong correlation between mental health disorders and living with HIV or AIDS, a correlation that is often overlooked. According to the National Institutes of Health, people with HIV have an increased risk for developing mood, anxiety, and cognitive disorders and are twice as likely to live with depression as those who do not have HIV. A 2010 U.K. study showed that one-third of HIV-positive men who participated in the survey met the criteria for a post-traumatic stress disorder diagnosis.
For those living with HIV or AIDS, depression is more than just mental hell — it can be a silent killer. Studies show that if people living with HIV feel stigmatized or suffer from mental illness, they are less likely to take their medication properly, which not only puts their own health at risk by not suppressing the individuals’ viral load, but also raises the likelihood that they will pass HIV on to others. Individuals living with HIV and depression are also more likely to think about suicide or even attempt to take their own lives.
Despite what we know about the connection between mental health and HIV/AIDS, too few people living with HIV or AIDS, and those invested in their health and happiness, are getting the mental health support they need. That is why we are proud to announce the opening of the state-of-the-art GMHC Carl Jacobs Mental Health Clinic, which will allow us to incorporate innovative treatment and counseling into our service model. Services will be available to adult New Yorkers of all sexual orientations, gender identities, and income levels, regardless of HIV status.
Past traumas, stress, depression, reduced self-esteem, and other challenges can be grueling to deal with. We aim to offer holistic services that address not only our clients’ mental health issues, but their social, spiritual and health concerns as well. Meanwhile, the ability to reach more HIV-negative people with HIV-preventive interventions and mental health services will help us decrease new HIV infections.
Stigma and discrimination continue to be common barriers for people living with HIV. Fortunately, the media can play an important role in helping to remove these and other barriers. In my own survey of Latin American news articles mentioning HIV and AIDS, and in meeting with media professionals and advocates, I found that Latin American Media has room to improve its use of correct and destigmatizing language when talking about people living with HIV. Covering HIV both correctly and responsibly is important, because doing so is an essential part of raising awareness, debunking common myths, and giving voice to an already marginalized group of people.