Dr. Anthony Fauci reflects on 40 years since the first case of HIV: ‘I thought it was a fluke’
Dr. Anthony Fauci, who has been this country’s public guide through the storm of COVID-19, also got his start in the midst of another pandemic: HIV/AIDS, which first appeared in the United States 40 years ago this June.
“I thought it was a fluke,” Fauci, National Institute of Allergy and Infectious Diseases director since 1984, tells Yahoo Life. “And then one month later, 26 — curiously, all gay — men, otherwise previously well, were presenting not only with the strange pneumonia, but with also an unusual cancer called Kaposi’s sarcoma and other opportunistic infections.”
Since that time, medical treatments have evolved so well that AIDS, the avoidable result of HIV when left untreated, is no longer a death sentence. (In 1992, AIDS was the leading cause of death among men ages 25 to 44.)
The symptoms were discovered to be sexually transmitted, and later referred to as GRID (gay-related immune deficiency) due to its disproportionate impact on gay and bisexual men — the term fueled misconceptions and stigma around gay men that still exists today. It wasn’t until September 1982 that the Centers for Disease Control and Prevention first used the term “AIDS,” which stands for acquired immune deficiency syndrome.
The four-decade anniversary is “very moving for me because I remember quite clearly my first encounter 40 years ago when we had the first cases that came out,” Fauci says.
“I made a decision at that point that this had to be a new infectious disease,” he continues. “There was nothing else that could explain it. So I decided to start studying here at the National Institute of Health, bringing these men in who were very, very ill. I did that right from late 1981 to the present day. So I have 40 years of this journey that went from frustration and pain to the discovery on the part of our institute, in collaboration with pharmaceutical companies, drugs that turned out to be totally lifesaving and transforming.”
Since 1981, nearly 33 million people globally have died from AIDS-related illnesses. In that time, the medical community has made tremendous strides, largely due to NIH’s research.
Antiretroviral drugs, introduced in the mid-1990s, have changed the well-being of millions of people living with HIV around the world, saving their lives and maintaining their dignity — so much so that their lifespan is now just as long as people living without HIV.
Even more so, thanks to the global consensus Undetectable Equals Untransmittable (U=U), health organizations like the CDC and the World Health Organization have endorsed the fact that when a person living with HIV is on treatment and their viral load (the volume of virus found in the body) is suppressed, or undetectable, it is impossible for them to transmit the virus to others.
That realization alone has changed the mindset of people living with HIV and those who love them, who for so long had been plagued by fear and shame anchored by old misconceptions.
Recent developments like PrEP (pre-exposure prophylaxis), a daily pill strategy that when taken routinely makes it nearly impossible to contract HIV, has also been instrumental in preventing transmission.
“I feel tremendous relief and optimism and hope,” Bruce Richman, founder of the Prevention Access Campaign, which built the U=U consensus, tells Yahoo Life. “We're at a place now where we have the medications and services that can keep people with HIV healthy, and then prevent the transmission of HIV. So we’re at a point where people with HIV can have quality health care and treatment. They can live healthy lives and not have to worry about passing HIV on to their partners. Along with PrEP, we really have, as people say, the tools to end the epidemic. And that’s exciting to me.”
However, Richman adds, while these discoveries are an “absolute revelation,” treatments are still “out of reach for far too many people with HIV” due to barriers in access to health care as well as from social stigma.
COVID connections
While we’ve come so far in terms of understanding HIV, Richman notes it’s important to honor the emotional trauma of the COVID-19 pandemic and understand how parallels with the HIV epidemic have affected longterm HIV survivors.
“The pandemic has kind of re-traumatized so many people with HIV who are reminded of the early years,” he says. “There was such fear of passing on this deadly virus to the people that you love, and that’s something that people with HIV have lived with for decades — and now that is extended to the global human population. So I think [COVID] has brought up a lot of feelings and memories and pain. I think this kind of underscores the need for more mental health service counseling and more community for people with HIV, especially long-term survivors.”
Fauci, who in the last year has educated the world on the effects of COVID-19, much like he did during the HIV epidemic, acknowledges that the government was slow in responding to the AIDS crisis. “I think I can say we all tried our best,” he says. “Obviously, in the beginning we didn’t fully understand the disease. We didn’t fully understand the impact. We were putting bandages on hemorrhages.”
As part of the lagging government response, Fauci often found himself at the center of criticism from activists, particularly those involved with the radical protest group ACT UP. But because he was open to learning and adapting, much of that tension was able to get resolved — including with the gay activist firebrand and writer Larry Kramer, who went from being “an adversary” using “provocative, theatrical” protest to get Fauci's attention to being a close friend. (Kramer died in 2020.)
“When he did get my attention, I reached out to him ... and then I became one of his physicians, I saw him here at NIH,” Fauci recalls. “And he became a very, very dear friend who was very, very close to me. I mean, I think that we could say that we loved each other.”
He also addresses past and present outcry from HIV activists about the fact that an HIV vaccine — not to mention a cure — has been slow to be produced, especially given the hundreds of millions of dollars poured into research. But unlike COVID-19, a vaccine for which took less than a year to research, approve and export, HIV is a virus that is much more difficult to control, he says.
“The body does not make a very good immune response against HIV, and the virus figures out ways to invade the body's immune system,” explains Fauci. “It continually mutates. It integrates itself into the genome of cells. So the reason for not getting a vaccine yet for HIV, when in 11 months we got a vaccine for COVID-19, is merely the nature of the body's capability of responding to those individual viruses.”
Still, “it’s not for a lack of trying,” Fauci assures. “All you need to do is take a look at the therapies that we’ve gotten for HIV and how we’re trying to get therapies that you don’t have to give every day. ... We’ve put an extraordinary amount of effort into trying to cure this virus.”
Communities disproportionately affected by HIV and hope for the future
Twenty five years ago, a Joint United Nations Programme on HIV/AIDS, UNAIDS, was created to help coordinate work across multiple UN agencies. In that time, UNAIDS has made significant progress in the fight against AIDS and has achieved many milestones people once perceived as too audacious.
"I’ve learned much from many decades of this work," Regan Hofmann, UNAIDS director, a.i., U.S. Liaison Office, who has been living with HIV for 25 years, tells Yahoo Life. "But one of the most central lessons to me in the fight against AIDS is the power of people speaking up — to educate, to advocate and to agitate, if necessary. The stigma, discrimination and criminalization associated with HIV/AIDS remain debilitating. We change those things with our personal stories and by using our voices and relationships to help people understand that HIV is just a virus, nothing more, nothing less."
The work of such activists has paid off. Last week, United Nations Member States gathered for the 2021 United Nations High Level Meeting on HIV/AIDS. At the meeting, nearly every nation in the UN agreed to support the ambitious 2021 Political Declaration on Ending AIDS. If the targets contained in the declaration are met by 2025, it will put the world back on track to end AIDS as a public health threat by 2030.
The goal, which the U.S. government has vowed to attain through various streams of funding and research — including more education about PrEP — has shined a light on systemic issues faced by Black and brown communities, both disproportionately affected.
According to a 2018 report from the CDC, Black people accounted for 13 percent of the U.S. population and yet they were 42 percent of new HIV diagnoses that year, while Latinos made up 27 percent of new diagnoses.
Much of that disparity has to do with a lack of access to health care, education about treatment and prevention, information on sex health (including language barriers), and various other local matters that many grassroots organizations and NGOs have tackled head-on in the last several years.
Meanwhile, criticism surrounding the pharmaceutical industry — largely stemming from the early days of HIV, when activists rose up to demand researchers prioritize HIV research for life-saving medications — still reverberates.
“The history of AIDS reveals that the coalition was able to beat HIV but they couldn't overcome capitalism,” Sarah Schulman, author of the new Let the Record Show: A Political History of ACT UP New York, 1987-1993, tells Yahoo Life.
“So even though the medications exist by which an HIV-positive person should be able to live a normal lifespan, the profit motive of global Pharma keeps that from happening. Not only do we need a logical, fair and coherent health care system in America, we in fact need a global health care system that surpasses economic inequality and gender and racial discrimination.”
Fauci says the criticisms against big Pharma are fair, but for his role he is looking ahead to the future and points to several reasons to be optimistic about the fight to end HIV.
“We’ve made spectacular success in therapies and prevention,” Fauci says. “What we can look forward to are three things actually: One is to end the epidemic in the United States by 2030. The other things are ... scientific: One of them is to ... develop a safe and effective vaccine, as difficult as it is to perhaps use some of the things we learned from the development of the vaccine with COVID-19 to apply that to HIV.
“And then thirdly, one which is going to be difficult but not impossible is to actually find the cure. So we have good drugs to suppress the virus. We want to get rid of that virus so that a person doesn’t have to take medications on a daily basis.”
Adds Hofmann, "We know what we need to do, how to do it and whom we need to reach. Robust budgets, enabling social and legal environments, strong political will and the ability to address inequalities will allow us to save the lives of millions of men, women and children living with and at risk for HIV. Their survival depends on whether world leaders keep their newly made promises on HIV/AIDS."
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