We Have Antiretrovirals and PrEP. So Why Hasn’t the HIV Epidemic Ended?

Last week, the United Nations (UN) issued a declaration renewing its call to eliminate of HIV/AIDS by 2030, to be accomplished in part by boosting spending on eradicating the disease in lower- and middle-income countries. The U.S. was one of eight countries that didn’t sign the declaration.

The UN action was the latest in a string of efforts to end an epidemic that began 47 years ago, in 1981. “Let me just make a promise to those children and all others who have contracted this disease: I will do all that God gives us the power to do to find a cure for AIDS,” President Ronald Reagan, who had just visited a pediatric AIDS ward, said in a speech to the Presidential Commission on the Human Immunodeficiency Virus Epidemic in July 1987, the first year he addressed the issue publicly. “We’ll not stop, we’ll not rest, until we’ve sent AIDS the way of smallpox and polio.”

Following the introduction of the first antiretroviral drug that same year, HIV has gradually gone from being a near-universal death sentence to a manageable chronic disease. The addition of pre-exposure prophylaxis (PrEP) drugs has also greatly reduced the virus’s spread. But despite these innovations, the disease remains a problem, with more than 32,000 Americans diagnosed with HIV annually. So why hasn’t it been eradicated by now?

“The big reason why is that we don’t have political leadership,” Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, a nonprofit organization focused on patients with those illnesses, said in a phone interview. “You need national leadership. This is the role of the CDC and they’ve been sidelined.”

Demetre Daskalakis, MD, MPH, former director of the CDC’s Division of HIV Prevention, agreed. When Jay Bhattacharya, MD, PhD, was acting director of the CDC, “he said that one of his top priorities was ending the HIV epidemic by using technologies like long-acting injectables such as lenacapavir [Sunlenca, Yeztugo] or cabotegravir [Apretude] or the cabotegravir-rilpivirine combination [Cabenuva], and then days later they proposed a budget to cut the entire piece of CDC that would be able to implement such a thing,” he said last month at the annual meeting of the Association of Health Care Journalists (AHCJ).

“The natural [response] then, is, ‘Well, that’s OK, because NIH will do implementation science and we will be able to scale up long-acting injectables using research funds,'” Daskalakis continued. “But research funds go away. CDC is there for the duration. So a nice 5-year project that will scale up HIV prevention that then ends with no next step means people will not get what they need to be able to get HIV prevention. It is a laudable goal that he wants to end HIV, but you can’t do it if your boss cuts the entire budget.”

The budget cuts also are threatening continuity of care, Athena Cross, DrPH, vice president and chief programs officer of AIDS United, a nonprofit dedicated to ending the HIV epidemic, said at the AHCJ conference. “In Richmond, Virginia, a clinic closed with [about] a week’s notice to the 500 patients that were going to that clinic who had nowhere else to go. Then the place that they were sent to was in a shelter, and it had even less access to the healthcare that they needed.”

In terms of controlling the epidemic, “the research is that if you are undetectable, you’re untransmissible,” Cross said. “This is why we want to make sure that people have access to their medication, that they stay on the medication, and that’s what’s super important.”

A state-and-federally funded program to help low-income HIV/AIDS patients — the AIDS Drug Assistance Program (ADAP) — is also being squeezed, she added. Recently Florida tightened eligibility for its ADAP program, “which meant that 16,000 people lost access to their HIV medication. There is [a court] injunction now that has sort of halted some of that, but we do know that multiple states are replicating these same types of policies and restrictions.”

Between the federal and state budget tightening and the loss of philanthropic investment in HIV, “from every single angle, this community, the work that happens in the space is being squeezed, and it’s becoming harder and harder for us to be able to make sure that people have access to care and prevention,” said Cross.

Daskalakis, who is now chief medical officer of the Callen-Lorde Community Health Center in New York City, said that when he was in Atlanta and worked at a health clinic for low-income patients there, he noticed that two other issues — a higher rate of uninsured patients in Georgia, which hasn’t expanded Medicaid; and greater stigma toward the LGBTQ+ community — also affected access to HIV care.

“[Because of] racism, sexism, homophobia, and transphobia, the people that I was seeing were less likely to go to the [places] that were doing the HIV treatment and prevention because they were stigmatized,” said Daskalakis. “I think the combination of pretty significant stigma, smaller numbers of places that can do the work, and the fact that insurance access is so poor compared to other parts of the country, it is a perfect syndemic storm … that results in people not coming to care.”

And then there’s one other thing to consider, according to Schmid. “We’re also a product of our success — people are living longer; they aren’t dying like they used to, so people don’t see it as a major health issue,” he said. “It needs to be on peoples’ minds, and it’s not on their minds anymore.”