Four decades ago, the world changed.
On June 5, 1981, the first report was released that documented the diagnosis of Pneumocystis carinii pneumonia (PCP) in otherwise healthy, gay men in Los Angeles, California, according to the Centers for Disease Control and Prevention (CDC). PCP is generally seen in people with weakened immune systems.
Considered the first official record of the start of the HIV epidemic, the report of these early cases marked the start of a devastating public health crisis that has persisted for 40 years.
This crisis has especially affected vulnerable members of the greater LGBTQIA+ community and disproportionate numbers of People of Color.
Since the start of the crisis, 34.7 million people have died from AIDS-related illnesses globally, according to UNAIDS.
For many people, common media images and reports from the 1980s and ’90s of hospital wards full of sick and dying people, mass protests against government negligence, or the unveiling of the AIDS Memorial Quilt honoring those lost can make the crisis seem like it’s a distant part of history.
It isn’t. In fact, the CDC estimates that about 1.2 million people were living with HIV in the United States in 2018.
Advancements in medicine have introduced increasingly more sophisticated antiretroviral treatments — meaning that living with HIV isn’t a death sentence for people who achieve undetectable viral loads. It also means those who achieve undetectable viral loads are unable to transmit the virus to sexual partners.
The advent of preexposure prophylaxis (PrEP) treatments has created an effective preventive tool, shielding people from contracting the virus.
All of these changes over the years can give a false sense that it’s over.
But the HIV crisis is very much alive, with its impact on our society at large drawing striking parallels to the new public health crisis we’re facing: COVID-19.
Healthline spoke to two infectious disease experts embedded in treating HIV about how far we’ve come in managing it and what more we need to do to end this epidemic.
How far we’ve come — and still need to go
“We have light-years to go. We’ve made a lot of incredible progress, things you wondered if they were ever possible, but we still have big things to conquer,” said Dr. Alan Taege, an infectious disease expert at Cleveland Clinic in Cleveland, Ohio.
Taege recalled the early days of HIV, describing a challenging reality for doctors and healthcare professionals. With little information on this virus that was spreading, vague and unsure, all they could do was “offer comfort.”
No treatments existed in the early ’80s when it began. There was hospice care and some psychological assistance, but beyond that, there was an unknown virus compounded by the crushing weight of social and cultural stigmas tied to HIV and AIDS.
Taege highlighted a timeline of fits and starts.
There was some progress made and some encouraging signs, like the creation of AZT (azidothymidine), the first HIV antiviral. He said it was heralded for its relatively “quick” development period of about 6 years, but then “it only worked temporarily,” had a problematic clinical trial, and many who took it experienced severe side effects.
Then new drugs came along, and eventually he said we came to a point of “controlling the disease” — and controlling it well — but not curing it.
“We really have to give a lot of credit to the people who were living with this disease in the early days, the AIDS activists. If you read the history, they marched right up to Congress, to the seats of power, and they protested loudly, sometimes crudely, but they made their point,” Taege said.
Taege stressed that we are certainly in a better place 40 years later.
We went from “hopelessness to hope,” where the virus can be better managed.
In the past, what used to be difficult conversations with patients about how much longer they had to live, are now more encouraging words that they “can live a long, healthy life if they take their medication and take care of themselves,” Taege added.
Going forward, what would he like to see?
Taege said we have to get better medications, treatments, and care worldwide.
Oftentimes, a lot of discussions about HIV within the United States fail to capture the scope of the crisis worldwide, he explained. In many cases, discussions are very focused on the status of the crisis in the Western world and in developed, often predominantly white nations.
“We can’t just treat what’s inside the United States, or Europe or Australia. It would be nice to have medications become less expensive, and of course, for us to work toward a cure. That work is still challenging,” Taege said.
“We have the problem of how the virus, when it gets inside cells, it plants itself inside our DNA. We currently don’t have a way to get it out of there. That’s the last big hurdle in developing a vaccine, a cure, getting it out of the cells, extracting it from the body,” he added.
He said there’s really only one known case of eradicating HIV, and that was with a person who had leukemia and needed a bone marrow transplant. Taege said that kind of treatment would be incredibly “impractical in treating people all over the world.”
Addressing racial and economic disparities
Dr. Hyman Scott, MPH, the clinical research medical director at Bridge HIV and an assistant clinical professor of medicine at the University of California San Francisco (UCSF), told Healthline that it’s important to place the HIV crisis in conversation with the current reckoning over societal and medical racism today.
Those initial reports of the early days of the epidemic 40 years ago were really centering on cases of “mostly white, gay men.”
“What’s interesting is after that, it was a Haitian immigrant, a Black woman — all these Black and brown people and immigrants afterwards — that is never discussed when we have this reflection of the start of the crisis,” Scott explained.
“It’s very problematic in addressing disparities in HIV and HIV care,” Scott added. “You don’t have to go very far on the left and the right of this to see that we were seeing these cases among Black and brown people from the very beginning.”
Scott said there are a lot of parallels between the current COVID-19 pandemic and HIV when it comes to racial disparities.
Communities of color are disproportionately affected by both public health crises — and oftentimes, the narratives surrounding progress in both ignore these populations.
The current discourse around COVID-19 in the United States celebrates the proliferation of the vaccine, for instance, while the virus is still running rampant in Black and brown communities.
Similarly, Scott pinpointed the discussion around advancements in HIV care and prevention. PrEP, for example, is widely used and disseminated among white CIS gender gay men in urban areas.
Rates of adherence and public health education around the preventive drug are much lower in rural, poorer areas, and especially communities of color.
Scott said that in reflecting back on 40 years of HIV, we have to be mindful of the fact that 4 decades is a long time. Needs change, and what might have been important to highlight in the early 1980s is different from what needs to be the focus now.
“The world is in a different place, yes, we have access to more support and treatment, but that support might be different,” Scott said.
“If you think of the economics of individuals who are African American or Latinx, individuals who are trans, the intersectionality of Black trans women in the south is different than that of white gay men in one of the coasts,” Scott explained. “We have to really be thoughtful in determining what needs to be done, how it’s done, and reflect [on] the needs of populations most at risk.”
Scott also pointed out that not enough investments have been made in our society to close some of the gaps in treatment and care for these vulnerable communities.
He said the larger cultural discussion over racial equity and social and economic reform in our country all feed into the issue of where we are now with HIV.
He said the data that shows places where there are huge disparities are also places where HIV isn’t always the main concern for a lot of individuals who are most disproportionately affected by it.
“You have to put this all in the context of other concerns like racism and transphobia and violence and economic disenfranchisement and educational disenfranchisement and investment,” he added. “There are a lot of layers and the big challenge is how do you address all of them.”
Scott stressed that a lot of the prominent voices making policies and publicly addressing these issues also don’t necessarily have experience being embedded in or understanding these communities.
He said the most effective approach for HIV with these populations is one that’s community driven.
“There’s this idea out there that these are people who are ‘hard to reach,’ well, no they’re not, you just don’t know how to reach them,” he said. “You might not be invited to those spaces, it’s not about them — it’s about you as a person trying to get into a space where there are reasons why you might not be invited.”
We have the tools to end the epidemic
Scott said we have the “tools to end the epidemic” at our disposal, but as a society, we aren’t doing enough to address issues that are inextricably linked to HIV.
“The disparities in health track with disparities in income and opportunities in education and environmental justice, in safe spaces and schools, and stigma and substance use. There’s all these social determinants that are impacting the health of people living with and at risk for HIV,” he said.
Taege said a big roadblock for better outcomes is the fact that so many people of poorer socioeconomic status in this country don’t have access to healthcare or direct contact with a professional who can give them the care, testing, treatment, and education they need to manage their health and treat HIV.
While advances in medicine have yielded better medications and understanding, lack of advancement in American healthcare and its approach to building trust within Black and brown communities is one of the key barriers for us ever moving past the epidemic.
Both Taege and Scott agreed that stigma still exists.
While there has been a lot more positive media representation for people living with HIV — for example, you can now regularly see TV ads for HIV medications on prime-time television — misinformation about how the virus is transmitted, who has a higher chance of developing it, and ugly prejudices around people living with HIV still persist.
Taege said he would like to see a day when HIV is talked about just like any common, chronic condition.
Trying to detach it from that sense of shame, from the damage that has been done culturally by some people who have linked it to transphobia and homophobia, is a constant battle for advocates, activists, providers, and the greater communities of which people living with HIV are a part.
However, it’s not all bad news.
Scott and Taege both said they believe a vaccine is “not science fiction” but a reality on the horizon.
The next challenge, the salient call to action, is to make sure it is equitably distributed. As is all too often the case with medical advancements, it can’t just be reserved for the connected in affluent parts of the world.
Ending the global HIV crisis 40 years after it started means crafting global, community-driven solutions.
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