40 Years Later: Stigma and Progress Collide Since the Onset of the AIDS Crisis
On June 5, 1981, the Center for Disease Control published an article detailing unusual infections and immune system malfunctions in five previously healthy gay men in Los Angeles. By the time the article was printed, two of the five men had died; the remaining three would meet the same fate shortly thereafter.
And so began, forty years ago, the United States' haphazard attempts to understand, diagnose, and advocate for people with what was first called GRID, which stood for gay-related immunodeficiency, then the deriding term "gay cancer." Human Immunodeficiency Virus/Acquired Immunodeficiency Syndrome (HIV/AIDS) did not even enter the public lexicon until a year later. But what to call it was just the beginning.
In the 40 years since the AIDS crisis began, over 700,000 people in the United States have died of the disease, per the Kaiser Family Foundation; the CDC notes that some 13,000 continue to die from it each year. It is an epidemic whose infections and fatalities are ominously mirrored by today's global health emergency, though the response and action around each have differed.
"As one of our members stated: Can you imagine how many of our friends might still be around if the country had responded so quickly to HIV as it did to COVID-19?" says Vincent Crisostomo (he/him), Director of Aging Services at the San Francisco AIDS Foundation. "Just like the AIDS crisis, only time will tell us how many people might have survived COVID-19 had the previous White House administration responded appropriately at the beginning stages of the pandemic. I hold the view that the COVID-19 pandemic offers us the opportunity to right those issues related to health, social, and racial justice."
The history of AIDS in the United States is one marked by stigma, fear, and, to this day, an immense lack of care for those (often already marginalized communities) living with HIV. The 40 years since its onset have seen activists rise up to provide care when the government would not, art and cultural touchstones that make sense of the crisis' chaotic early years and enduring legacy, and research paving the way toward a healthier and more equitable future.
It is a sweeping history. Pushing it forward — step by step, law by law — are countless organizers, nonprofit employees, and healthcare workers whose efforts, often unseen and unthanked, ensure we remember the toll HIV/AIDS continues to take, the progress we have made as an LGBTQ community, and the action that's needed to serve those most impacted by the disease.
On this anniversary, we offer a snapshot of where we are now: A portrait of survivors' and advocates' continued efforts.
A Tale of Two Generations
Given the near-half-century between the onset of AIDS and the present, two major generations have emerged: Older queer people with the lived experience of witnessing the crisis unfold, and a younger cohort of queer teens and millennials, born in the mid-1990s and later, who were not alive during the peak of the crisis. There is not just an age gap between these two generations.
For many who watched their friends die and lived in fear throughout the 1980s and '90s, their experience is one still defined by trauma, something that may be harder to comprehend for a younger generation who came of age during a time of greater representation in the media and lived through the seismic changes during the Obama years with its landmark Obergefell v. Hodges case.
The first generation had Tony Kushner's "Angels in America," a momentous theatrical (and later film) tribute to the queer love and political war that defined the Reagan years and his administration's failure to act; the next one had Matthew Lopez's "The Inheritance," first produced in 2018, which looked to bridge the gap between such older and younger gay men.
But it would be short-sighted to equate the younger generation with a lack of experience with, or understanding of, the consequences of HIV/AIDS. A 2012 report from the CDC noted that every year, amongst those who are infected with HIV, one in four of them is between 13 and 24 years old.
"I do find it is important to connect with people from different generations. Personally, I find it beneficial to talk with those that share the same status as me," says Austin Abernathy (he/him), a 27-year-old Houstonian who is HIV-undetectable. "I want to know how they came to terms with their status, who did they rely on, how have medicines changed since they were diagnosed. I like to seek advice from people within my own micro-community to see how we are more alike than different."
Support for our elder generation can, unfortunately, be slim. "In San Francisco, 70% of the people living with HIV are over the age of 50," says Crisostomo from the San Francisco AIDS Foundation. "The city has very few services that directly target and support this demographic known as 'The AIDS Generation.' This highlights a significant need for this aging population. In the last few years, there have been efforts made to get older people living with HIV to be designated a population of greater need into the Older Americans Act."
This population battles more than just ageism and isolation; in a world defined by the pandemic, and with so many working, connecting, and communicating online, there is also what Crisostomo calls a digital divide. "Most of our members lack the access and capacity to the technology that is needed to maximize the experience," says Crisostomo of the challenges of connecting with others during this time.
"We've also seen a 'graying' of the epidemic with people ages 50 and older now accounting for the largest demographic of those living with the disease," says Kelsey Louie (he/him), CEO of Gay Men's Health Crisis, the world's first HIV and AIDS service organization. "Despite biomedical advances, older adults with HIV continue to experience high rates of stigma, isolation, and depression."
Those who are a part of this "greying" generation are not only sidelined but are also, in many ways, an untapped resource. As this generation ages and ages, we are left with fewer and fewer voices to be the primary resources to share the wisdom and lived experience of two of the most defining eras in queer American history: the 1969 Stonewall Riots and the AIDS crisis that followed.
Marginalized Communities Continue to Be Affected Most by HIV
To understand the contemporary impact of HIV, it's important first to know who it continues to affect. As EDGE previously reported, Hispanic and Latino men are four times more likely to contract HIV than white men. Language barriers, stigma, homophobia, and religiosity are among the cultural factors that create this statistical imbalance, as are the many political ones: a person's immigration status may dictate whether they feel comfortable going to a doctor who would then ask for insurance or some kind of identification.
Black Americans similarly, compared to their white counterparts, face increased rates of contracting HIV. "Poor access to health information, delayed medical care, poorly managed chronic conditions, mass incarceration and economic instability are some of the factors which act as social determinants of health," says Coleman Goode (he/they), a manager of community organizing at the AIDS Foundation Chicago (AFC). "Black people living with HIV are still significantly less likely than white counterparts to receive ART [antiretroviral therapy] within a month of entering care. We understand that when people living with HIV are on ART and are able to achieve viral suppression and an undetectable viral load, they cannot transmit HIV to another negative partner, also known as U=U."
"There is a multitude of reasons the Black community is disproportionately impacted," they add. "In my queer Black experience, the impacts I see every day are rooted in generational trauma, intellectual property exploitation, and white supremacy culture/white culture, to name a few."
This uphill climb does not deter Goode. "AFC's many programs are constantly evolving to meet the needs of the most marginalized and the 45,000 people living with HIV in Illinois," they say. "One of our biggest current initiatives to end the HIV epidemic in Illinois by 2030 is the Getting to Zero plan. The goal is to, one: Have zero new HIV transmissions; and, two: Have zero people living with HIV who are not engaged in care. The AFC is one of the steering committee members for the Illinois HIV Action Alliance who is looking to end the criminalization of people living with HIV through SB655."
IPHA notes that Illinois Senate Bill 655 proposes to repeal "the statute creating the offense of criminal transmission of HIV" in that state.
Ged Kenslea (he/him), senior director of communications for AIDS Healthcare Foundation (AHF) in Los Angeles, similarly understands the ways in which stigmas persist — and who they are most likely to affect.
"Stigma and discrimination are sadly as prevalent today as they were during the first days of the AIDS epidemic: Against gay men, people of color, trans individuals, women, IVDUs [intravenous drug users], and more."
To uplift these marginalized populations, AHF builds community. The organization has a number of affinity groups to unite its people, including BLACC (Black Leadership AIDS Crisis Coalition), which unites cultural influencers and health advocates to revolutionize outreach to Black Americans and increase wellness HIV education; FLUX, which is dedicated to creating safe spaces and social events for trans and gender non-conforming individuals; LOUD (Latino Outreach & Understanding Division), which employs marketing efforts that authentically understand and speak to the diversity within the United States Latino population to communicate medical care and education efforts; and SPARK, a women's empowerment group.
Through AHF's mission of medical care and services and these ever-evolving affinity groups, "AHF is now the largest HIV/AIDS organization in the world, providing free life-saving HIV treatment and care in 45 countries," Kenslea says.
For Those in Rural States, 'It Feels As Though We Do Not Exist'
Race and ethnicity are two determinants in HIV statistics and care; geographical location is another. For rural states, in particular, resources can be scarce. In 2019, the Arkansas AIDS Foundation, one of the largest HIV service organizations in the state, shut down. Its closure left those in the Bible Belt more exposed, as the center had previously housed people living with HIV while simultaneously sinking into debt and coping with rocky leadership transitions.
Abernathy, in Texas, notes that one's resources as a person with HIV vary widely in the state.
"In Houston, there are plenty of adequate resources available for those living with HIV. If someone were to ask me where they could go get tested, I could easily point them to a location that would have information available and staffing of qualified and caring individuals," he says, citing Legacy Community Health and Montrose Center among them. "The same may not be able to be said about rural Texas. Your experience as a queer-identifying individual will be very different from Dallas to McAllen. Our elections are getting closer and closer to turning blue, so maybe that means one day a young queer person looking to be tested for HIV will be able to find adequate resources and a trustworthy doctor, free from judgment."
A few states north, the Wyoming AIDS Assistance was founded "to exist loudly in the wake of Matthew Shepard's murder, to tell people that we are not going to go anywhere," says Scott Cheney (he/him), president of that organization's board of directors.
Living in a western community, Cheney recognizes that to build and maintain an organization, members must wear multiple hats. "We are entirely a volunteer board, and we are also the drag queens that host events," he shares. "A stigma that exists is the idea that a man who dresses up as a woman and 'prances around 'is a degenerate with no future. The fact of the matter is we are successful in our main careers; I'm a healthcare executive, and my fellow queens are lawyers, community leaders, educators, and developers. We work all year for our organization to succeed, and we donate everything we raise, alongside hundreds of hours of time."
The challenges of rural areas are also unique; often, pharmacies will not stock the specific medication necessary for HIV-positive individuals. "We only have three HIV specialists in the entire state, and it is not uncommon for someone to drive three to four hours (one way) for a doctor's appointment," Cheney says.
"Wyoming is a small state that always gets forgotten," he adds, "and too often that feels as though we do not exist."
The Science Pushing Research and Treatment Forward
"When I look at where we are today, it's so gratifying that HIV no longer needs to result in death," says Dr. Claire Carlo (she/her), an internist and HIV specialist. Carlo currently works at the Boston Health Care for the Homeless Program, providing care to HIV-positive patients and treating Hepatitis C, but she got her start at St. Vincent's Hospital in New York City, "where I did my residency from 1986-1989," she says.
"We cared for many HIV/AIDS patients at a time when there were no effective treatments. St. Vincent's still had some wards, and there were so many HIV patients that at one point they were grouped together in an HIV ward — obviously something you would not do these days, due to patient privacy," she recalls. "There was a certain amount of fear in caring for these patients, since the mode of transmission was not known at that time. One of my patients organized a party for the entire ward, and the staff allowed it to happen, which is kind of remarkable."
Decades later, St. Vincent's filed for bankruptcy and shuttered, but its status as a pioneering center for HIV treatment and care lives on. Science advanced and medications were distributed. "We have incredibly potent, well-tolerated, and easy-to-take antiretroviral medications that, while not able to cure [HIV], can allow people to live normal lives," Carlo says. "Research has helped in a number of areas: The ability to diagnose the infection at an earlier stage, earlier treatment helps preserve the immune system and reduce transmission of virus to others, undetectable HIV viral load is untransmittable (U=U), PrEP to prevent infection in those with ongoing risk, and PEP to prevent infection in those with a known high-risk exposure. I can honestly tell my newly infected patients that they can live a normal life if they take antiretrovirals."
And that science continues to evolve: Earlier this year, International AIDS Vaccine Initiative and Scripps Research announced that a new HIV vaccine was being tested and showed promising results in early clinical trials. The test vaccine showed a 97% response rate among participants, and it stands out as it stimulates the creation of rare immune cells, ones vitally needed to start the body's antibody generating process that can fight a quickly spreading virus.
Such advancements are exciting, but "stigma remains a barrier to care," says Jenna Wimmer (she/her), a nurse practitioner at Hope & Help in Florida. "I've heard several stories of primary care providers that denied treating patients with PrEP, which shows the blatant lack of medical training for anyone that varies from what medical society has falsely decided is the 'norm.' "
Carlo agrees, noting, "These days, there's less stigma, but it's still a battle." Years ago, stigma was most prevalent around "the four H's — homosexuals, Haitians, hemophiliacs, and heroin addicts. I think about KS [Kaposi's Sarcoma] and the stigma if the purple lesions were visible on your body," she adds. "Fear made it harder for people to come forward and find out if they had the infection, thus leading to later diagnosis with more advanced disease. It was like putting out fires; you could try and treat the complications of HIV, but not the infection itself."
Today, when it comes to the health of those living with HIV, it remains reductive to divide one's well-being into two categories: Their physical and mental status. Often, one informs the other. "Another major challenge I have seen is the lack of familial support for individuals living with HIV, which leads to psycho-social trauma that compounds the difficulty of adapting to life with a chronic illness," Wimmer says.
As for what future discoveries might yield, Carlo remains optimistic. "If we have learned anything from this present pandemic, it's that cooperation in research can lead to breakthroughs quickly," she says. "There is a lot of reason for hope."
Hope for the Future
"I hope that within my lifetime a vaccine for HIV is released and FDA-approved," Abernathy says. "A weight would be lifted off my soul if I knew that future generations would not have to worry about HIV/AIDS."
In the meantime, building community and serving others is where many continue to put their energies. "We are currently celebrating 1.5 million patients around the world," says Eduardo Martinez (he/him), a mobilizer with AHF. "Thirty-one years after being told I was positive for HIV, that I had six months to live, here I am: Still living and helping others do the same."
"This year marks the 40th year of the HIV/AIDS epidemic — we can end the epidemic in our lifetimes," says Louie from GMHC. "But we must recommit ourselves to what it will take to accomplish that goal from prevention to care to advocacy. We all have a role in this fight, whether taking steps to protect ourselves from HIV infection, fighting stigma against people living with HIV and the LGBTGNC community, and ensuring all people living with HIV have access to the services they need for healthy lives."
These visions for the future include more than just prayers for a vaccine. "I would like to experience characters that are HIV-positive in a manner that doesn't center trauma," Abernathy explains. "There are works like 'Rent,' 'Dallas Buyers Club,' and 'It's a Sin' that have characters dealing with HIV, but I'm tired of seeing scenes of HIV-positive people crying and feeling helpless to the virus. I want to see a couple falling in love and discussing how to take care of their health while still loving life and one another."
"I want to be able to see characters like myself, a person who is taking care of their health and not about to die," he adds. "While I can live a happy and healthy life right now, just thinking about [the hope of a vaccine] does make my eyes water. I truly hope that I get to see this happen within my own long and prosperous life."