In just four decades, we’ve taken HIV from an almost assured death sentence to a manageable chronic condition.
We’ve just passed World AIDS Day on December 1. It’s a time to reflect on the massive accomplishments that can happen when researchers and community advocates come together to address a deadly pandemic head on and to honor the memories of those we’ve lost along the way.
Since the start of the HIV pandemic in the 80s, it’s estimated that 88 million people globally have been infected with HIV and 42 million people have died due to complications from AIDS.
Every year there are about 1.3 million new infections and more than 600,000 deaths worldwide.
Let us begin with the basics: What is HIV, and how does it lead to AIDS?
HIV stands for human immunodeficiency virus. It’s what is known as a retrovirus, because, unlike most things on the planet, it stores its genetic material as RNA, which it then converts to DNA inside a host cell.
This is the opposite of how most cell replication happens, hence “retro.”
HIV is a particularly nasty virus because it targets cells in the immune system. It infects certain types of white blood cells known as CD4 cells, replicates inside the cell, bursts out of the cell (destroying it), and then goes to look for more CD4 cells to start the process again.
By targeting these cells, HIV not only prevents the body from stopping the infection with HIV, but also makes people more susceptible to other infections that might not have been so severe with a fully functional immune system.
These infections are known as “opportunistic” infections and include things like tuberculosis, certain cancers, and certain pneumonias, among other things.
AIDS, or acquired immune deficiency syndrome, is the progression of untreated HIV.
Rather than being a virus itself, AIDS is the overarching name for a group of diagnoses.
In order to receive a diagnosis of AIDS, someone must be HIV positive and have either a CD4 cell count below 200 or have one of the 24 or so AIDS-defining illnesses.
For example, someone could be HIV positive with a CD4 count of 120, or someone could be HIV positive and have a diagnosis of a type of cancer called Kaposi’s Sarcoma. Both scenarios would fall under a diagnosis of AIDS.
Without treatment, progression from HIV infection to an AIDS diagnosis takes about 10-15 years.
Someone with untreated AIDS typically has a life expectancy of only 3 years after diagnosis.
But at the start of the epidemic in 1986, the CDC estimated that the average time between diagnosis and death was less than half of that.
The change in life expectancy is due to improved diagnosis, and thankfully there are some truly incredible advancements in prevention and treatment.
HIV first appeared in the U.S. in the early 1980s.
The infection itself had gone unnoticed, but suddenly young and otherwise healthy gay men began showing unusually high rates of rare pneumonias and cancers.
To a lesser extent, the diseases were also starting to show up in intravenous drug users.
In the early days of the pandemic, the disease was referred to as GRID: gay related immune deficiency, a name that would hinder progress against the disease for years to come.
By associating these illnesses with gay men, it caused the public to think it was a disease that only affected gay men and created a stigma that slowed the government response to the outbreak.
So much of the progress in the response to AIDS in the U.S. is largely, if not entirely, attributable to the work of the queer community.
The only money dedicated to researching the disease in the year it was discovered in the U.S. was donated by gay men after a community meeting.
The first community-based health response, known as the Gay Men’s Health Crisis, was founded by volunteers. One volunteer, Rodger MacFarlan, set up a hotline on his personal phone and received hundreds of calls.
The organization that would eventually become the San Francisco AIDS Foundation was established as a collaboration between a dermatologist who was treating Kaposi’s Sarcoma and community activists.
ACT UP, the AIDS Coalition to Unleash Power, was started as a grassroots movement by Larry Kramer with the goal of getting the government, public health agencies, and pharmaceutical companies to help those who were sick or at risk.
Their activism benefited everyone, because it was not just gay men who were dying of HIV in the U.S.
As early as 1982, the same rare diseases that had been showing up in gay men were starting to be seen in people with hemophilia, a rare genetic disorder that prevents blood from clotting and is treated by transfusing blood and blood products from donors.
By the time the U.S. government realized that HIV also spreads through blood and worked to secure the nation's blood supply, it’s estimated that 5000 hemophiliacs had been infected with HIV due to contaminated blood products, and 4,000 would die as a result.
Because the virus can be transmitted from mother to child during pregnancy or through breastmilk, infants began presenting with symptoms of AIDS.
In fact, it took the world some time to fully understand that HIV is transmitted through various bodily fluids of an infected person, including blood, breast milk, semen, and vaginal fluids.
Even though AIDS was showing up in children and people with no history of intravenous drug use, the stigma around the disease persisted.
Ryan White, an Indiana teenager, was diagnosed with AIDS at age 13 after being infected through contaminated blood products he needed to treat his hemophilia.
His family had to sue to force his school to let him attend, because people didn’t understand how the virus was transmitted and were fearful their children could “catch” it somehow.
The fight for awareness, care and de-stigmatization already required a herculean effort at a time when much of the population viewed the disease as a punishment for “alternative lifestyles.”
And the hostile social and political environments were only made worse by the all too familiar phenomenon of anti-science attitudes.
As we’ve seen with COVID, the sudden emergence of a new and deadly virus can cause people to react with denial.
The refusal to believe that something so terrible might happen for no reason and the discomfort at not immediately knowing the “why” of a disease, can cause people to cling to explanations that let them continue to feel in control of a situation.
That desperation led to a massive market for AIDS denialism.
Some people denied that HIV causes AIDS, instead claiming everything from the “gay lifestyle” to HIV treatments could be responsible for AIDS.
Some even denied the existence of HIV altogether. All with disastrous results.
In 1987, the first treatment for HIV was approved.
Azidothymidine (also called AZT) worked by inhibiting HIV’s ability to infect cells to replicate in and destroy.
The drug was by no means perfect—initial prescribed doses were high and caused a lot of side effects, and were less effective if started too early.
But the research showed that the majority of people who took it still benefited.
Despite this, some prominent AIDS denialists locked onto the imperfect application of early treatments to falsely claim that the treatments themselves were the cause of disease, not HIV.
In 2000, South Africa was experiencing an extreme HIV epidemic. AIDS was the cause of 25% of all deaths in the country and ¼ of pregnant women were infected.
The country’s then-president Thabo Mbeki was considering if AZT should be used as a cost-effective treatment option to slow the disease.
Unfortunately, he met with some prominent denialists and decided that he too did not believe that HIV was the cause of AIDS and that AZT was designed to poison black people.
He made it illegal to prescribe the drug to pregnant women to prevent transmission to the fetus.
The South African government eventually changed their stance, but it’s estimated that Mbeki’s denialism resulted in 330,000 preventable deaths and 35,000 babies born HIV positive from 2000-2005.
Unfortunately, but rather unsurprisingly, AIDS denialism is making a comeback.
The COVID pandemic reignited the questioning of scientific research, and if you’re going to question the existence of a new virus, I guess you might as well revisit questioning the other recent deadly pandemic of HIV.
But this time around, the reach of AIDS denialism is significantly greater than before, and high-profile people with access to large platforms are spreading the misinformation.
Robert F. Kennedy Jr., President Trump’s nominee to run the Department of Health and Human Services, has often cast doubt that HIV is the cause of AIDS, or that HIV even exists at all.
He falsely claimed in his 2021 book that it’s unclear if researchers have ever been able to isolate the virus—despite the fact that it was isolated by scientists at the Institut Pasteur in 1983 and numerous times since.
He also falsely suggested that “the gay lifestyle,” including the use of the inhaled party drug poppers, was a contributing factor to the development of AIDS.
Though he doesn’t mention it by name, what RFK Jr. is describing here is “terrain theory,” the unsubstantiated rebuttal to the scientifically established concept of germ theory.
In terrain theory, the idea is that pathogens are inherently harmless, and the environment of the body being “unhealthy” is what leads to disease.
Despite the fact that multiple studies have shown no correlation between drug use and the progression to AIDS in HIV positive or negative people, the claim has also been repeated on the popular podcast The Joe Rogan Experience, a show with 18 million subscribers.
To claim that HIV doesn’t exist is, of course, absurd. But to claim that HIV is a harmless virus that only leads to disease in people who did not take care of their bodies, ultimately blaming those who died for their own deaths, is downright offensive.
Their sacrifices and the work of the community continue to pay off with advances in HIV.
In 1995, the rate of AIDS cases in the U.S. was 27.8 per 100,000 people. In 2023 it’s…not even counted like that. Instead, we look at new HIV infections, because we’ve been able to essentially stop the progression of disease and prevent it in populations at risk.
The invention of pre-exposure prophylaxis (or PrEP) medication means that at-risk people can reduce their risk of acquiring HIV from sexual activity by 99%.
Development of a vaccine for HIV has long eluded scientists, given that the virus attacks the immune system, but just this year results were published showing a twice yearly injection prevented 100% of HIV infections in women in South Africa and Uganda.
Continued advocacy has resulted in improved treatments for HIV.
We understand now that prolonged use of antiretrovirals will result in mutation of the virus, and we’ve been able to create a variety of treatments so a new option can be added when resistance is detected.
Thanks to drug development, a single pill a day has taken an HIV diagnosis from a doomsday countdown to a manageable chronic disease.
Though we do not yet have a simple cure for HIV (there have been an extremely small number of people who do seem to have been cured by stem cell transplants) the drugs we currently have work so well that people with an undetectable viral load are considered unable to transmit the virus to others.
In the U.K. in 2020, for the first time ever, there were more new diagnoses of HIV in heterosexual people than gay men. It’s a trend that’s persisted through 2023.
It highlights how well targeted HIV education and care for gay and bisexual men has worked and highlights that we need to do more to help heterosexual people understand their risk and the options available to them for treatment and prevention.
Although we have made incredible strides in the fight against HIV, there is still work to be done. Despite being 13% of the population of the U.S., Black Americans make up nearly 40% of new HIV diagnoses.
