Ryan White and I would be the same age if he were alive today. He's not. He died in 1990 at the age of 18, right before he was going to graduate from high school, of an AIDS-related respiratory tract infection.
For the final few years of White's life he became famous—a household name—fighting for the right to attend school in Indiana at a time when Americans were still not entirely certain about how the human immunodeficiency virus (HIV) was spread. He was a hemophiliac who became infected from a blood transfusion, but at the time, most of American culture thought of HIV and AIDS as something that only afflicted gay men and those who injected street drugs.
White's court fight with the local school board became a cultural rallying point to drive an important point home: HIV and AIDS were going to kill off a whole lot of people unless Americans got serious about addressing the risks.
If you were a closeted gay teen, like I was, White also represented a fearful look at a dangerous future. I reached sexual maturity as a member of a high-risk class. My early adult life was shaped by the full awareness that I could very easily share White's fate.
White was one of more than 18,000 people in the United States to die of AIDS-related illnesses by 1990. But life today for people who have HIV and for those who are at risk of infection is remarkably, wonderfully different than it was in his time. While HIV has not yet been cured, medical research across nearly 35 years has brought us to a place where the virus can be fully suppressed. Not only are HIV-positive people able to enjoy normal life spans, they're also able to be sexually active with HIV-negative partners without the risk of passing on the virus.
In 1995, AIDS was the top killer of Americans between the ages of 25 and 44, according to Centers for Disease Control and Prevention (CDC) data. By 2016, HIV-related illnesses no longer cracked the top 10 causes. More people now die of kidney disease.
'You Can Live a Happy Life'
The decline in the spread of HIV and the dramatic drop in AIDS-related deaths are among the biggest health-related good news stories of the first part of the 21st century.
"It's an uplifting story with a lot of twists and turns," explains Myron S. Cohen, a professor of medicine, microbiology, immunology, and epidemiology at the University of North Carolina at Chapel Hill. He would know: He's partly responsible for one of the story's more significant chapters. In 2005, Cohen organized a massive international study of more than 1,700 primarily heterosexual couples where one partner was HIV-positive and the other was HIV-negative. As the quality of drug therapy had been improving, a theory needed to be explored: Do these treatments suppress HIV levels to the point that the virus could not be transmitted to partners?
"Can that drug, when you treat somebody, also render them less contagious?" Cohen asks. "We've spent forever working on that question."
His team got part of the answer in 2011, when an oversight board stopped Cohen's study prematurely after an important discovery. As part of the testing, HIV-positive members of one group were given immediate access to drug treatment, while the other group was scheduled to delay drug treatment until later. A review determined that only one participant in the group given drug treatment had infected his or her partner during the trial, compared to 35 partners in the other study group. They restarted the study and offered the drug therapy to all HIV-positive participants, not just one group.
When the effort concluded, researchers found just eight cases in which an HIV-positive person on drug treatment infected his or her partner. In four of those cases, the transmission likely happened before the medication kicked in.
Science magazine named this discovery its "Breakthrough of the Year" for 2011. Since that time, more and more research has arrived at the same conclusion. The study Cohen led focused on heterosexual transmission, but similar results are bearing out among gay men. A study released this May in The Lancet tracked more than 700 male couples in Europe where one man was HIV-positive and on suppression drug therapy and the other was HIV-negative. During the eight years the couples were monitored, not a single study participant transmitted the virus to his partner.
This research has all led to a significant shift in how HIV prevention and treatment are approached as public health issues. In the virus's early days, when HIV infection was likely to lead to AIDS-related illnesses and death, most public service messages offered dire warnings against unprotected sex and encouraged regular HIV testing among those at risk. As medical advances made HIV more manageable, the warnings continued—but for those who had become infected, new messages stressed the positive outlook. HIV was no longer a death sentence, and people who were infected could live healthy lives with treatment.
Advances in research also led to the discovery that people who are HIV-negative could take the same medications used to treat people with HIV and thereby resist becoming infected themselves. A drug called Truvada, manufactured by Gilead, was approved for use to treat people who were infected with HIV in 2004. Subsequent tests found it was also effective in preventing the virus's spread when taken by those who were not infected but were sexually active with those who were. In 2012, Truvada was approved as a form of pre-exposure prophylaxis (PrEP)—a preventive medication for those in high-risk categories.
We're now seeing a new public health approach, one designed to push HIV-positive people to seek treatment by helping them understand that this will actually stop them from infecting others. The campaign's message is "undetectable=untransmittable," or "U=U" for short. It simply means that if an HIV-positive person's viral load has been suppressed enough through treatment that it doesn't show up in blood tests, then that person is unable to infect others. The treatment for HIV is also the mechanism to prevent the spread of HIV.
The campaign was launched in 2016 (with Cohen as an endorser of its message statement) via the Prevention Access Campaign, a group that partners with organizations across the world to spread the "U=U" message. According to Bruce Richmond, the founding executive director of the campaign, the goal is to reach even further into at-risk communities and reduce the HIV stigma that keeps people from getting tested or treated.
"We're moving away from fear-based campaigns," Richmond says. "We're realizing terror and fear about people with HIV doesn't work. We're using the carrot, not the stick. The focus is really on medicine and staying on care. You can live a happy life and won't pass on HIV.…That's a revolutionary message."
'Study After Study Has Shown It Does Work'
There's a challenge, though, in actually getting the word out. The "U=U" campaign boasts hundreds of partnerships with organizations in 97 countries. Richmond explains that he's working with Vietnam's Ministry of Health on a national rollout in Hanoi, for example, translated to "K=K." But he says he's actually struggling to get the word out here in the United States, even though the campaign has significant support from HIV researchers, the National Institutes of Health, and the CDC.
According to data collected and examined by the Henry J. Kaiser Family Foundation, the U.S. lags behind Canada, Japan, the United Kingdom, Australia, France, Sweden, and many other developed countries in its HIV viral suppression rates. And these aren't small differences: Just 54 percent of Americans with HIV are receiving enough medical treatment for the virus to be considered "suppressed." In the United Kingdom and Switzerland, that number is 84 percent. New incidences of HIV infection had been falling for years in the United States, but that statistic has hit a plateau. About 38,500 Americans are still becoming infected annually. An estimated 15 percent of Americans who are infected do not know it.
Polling from Kaiser shows that there are significant gaps in the average American's awareness of advances in this space. People realize that fewer are dying of HIV-related illnesses and that treatment has improved, but many don't realize how much better it has gotten. In a poll from March, only 52 percent of respondents understood that drug therapy was effective in stopping people with HIV from infecting their partners. Only 42 percent knew that PrEP drugs even existed. But that's still an improvement, since just 14 percent knew about PrEP in 2014.
President Donald Trump announced in his State of the Union address in February that he wants to eliminate HIV in the United States within 10 years. State of the Union promises are often aspirational expressions of goals that may not exactly be realistic. This goal didn't come out of the blue, though. It was pushed up to the president by experts in public health. Is it actually achievable?
"Given the HIV treatments that we have as well as the prevention options that we have, theoretically, yes," responds Jennifer Kates, vice president and director of global health and HIV policy for the Kaiser Family Foundation. "Realistically, it's challenging. It's hard. The details are in proven public health interventions. It's building on years of knowledge and know-how. It's something we couldn't have said 10 or 15 years ago."
The true goal isn't complete elimination of HIV in the next decade, she says. Rather, it's to reduce new infections by 75 percent in five years and by 90 percent in 10 years. Trump's 2020 budget proposes $291 million for this effort, targeting areas where new infections are most notable.
Accomplishing that feat can't just involve targeting people whose sexual activity puts them at risk. Consider needle exchange programs, where intravenous drug users are able to replace the dirty tools they use to get high without worrying about getting arrested. Such programs were developed in the 1990s, despite the ramping up of the drug war at the time, because they served the important goal of reducing the spread of HIV. Yet needle exchange programs are still often attacked by those who believe they're encouraging drug use, which they don't like seeing in their neighborhoods.
The day after Trump's State of the Union address, the administration's commitment to reducing HIV was challenged from within when the U.S. attorney for the Eastern District of Pennsylvania filed a lawsuit to stop the city of Philadelphia from allowing a safe injection facility to be built. These sites are places where drug users can safely shoot up under the watchful eye of professionals who can quickly respond to overdoses and help those who are addicted seek treatment. Like needle exchange programs, they are harm reduction efforts that lower the risk of HIV transmission without trying to punish the underlying drug use. The United States doesn't have any of these facilities yet, and the Department of Justice is threatening legal action against any locality that tries to build one.
If the Trump administration is serious about advancing HIV prevention, it should rethink how it's using the opioid overdose crisis to breathe new life into the war on drugs. "Syringe access is an issue that's been politicized for many years," Kates says. "But study after study has shown it does work."
'This Depended on a Lot of Altruism'
While an increase in federal attention and spending is undeniably a part of the picture, the dramatic three-decade shift in the fate of those infected with HIV wasn't a top-down effort. Kates notes that community-level education and advocacy were at the tip of the spear. The fight against HIV also brought into focus the concept of the patient as an advocate for his or her own care, not just a passive recipient of outside treatment. People with HIV and AIDS became experts on their conditions and played a significant role in helping to push policy.
The medical advancements didn't just happen "out of the clear blue sky" or by government fiat, Cohen says. It took a lot of work, and a good chunk of it was philanthropy-driven. About a fifth of the funding for all disease treatment research and development comes from philanthropic sources, accounting for more than $650 million annually, according to data from the global health think tank Policy Cures Research. In 2017, about $144 million of that money was devoted to HIV research. That's nearly equal to the $149 million that the pharmaceutical industry itself spent researching HIV drugs in 2017.
"This depended on a lot of altruism from a lot of people, both infected and uninfected," Cohen says. "It's a great story, but it was decades in the making."
And the story is not over. Researchers are now working on an injected version of PrEP that would require only one shot every few weeks instead of a daily pill. Results of those tests are expected in 2021.
For somebody like me, whose entire early adulthood was framed by a fear that I might contract HIV and die, the looming end of this crisis is a triumph.