The Equality Spotlight Episode 3: ‘Ending HIV’ and Bonus Interview Content from Our Partners

This week’s episode, “Ending HIV: Science, Stigma, and Solutions”, spotlights amfAR, The Foundation for AIDS Research, which is one of the world’s leading nonprofit organizations dedicated to the support of AIDS research, HIV prevention, treatment education, and advocacy. Since 1985, amfAR has raised nearly $900 million in support of its programs and has awarded more than 3,800 grants to research teams worldwide.

In this episode, we sat down with Kevin Robert Frost, CEO of amfAR, to better understand what it actually means to “cure” HIV, why stem cell breakthroughs aren’t scalable (yet), and what it’ll take to close the gap between what’s scientifically possible and what’s equitably available.

Below is a bonus interview with Kevin that takes you deeper into the conversation.

Why did amfAR decide to focus so heavily on finding a cure?

“About a little more than 15 years ago, we made the decision to put most of our resources behind finding a cure. We believed that the science had developed to the point where this was possible. Of course, if you go back 15 years ago, ‘cure’ at that time was considered a four-letter word in the scientific community. People didn’t use the cure word. But we felt very strongly that if we didn’t talk about where we wanted to go, we’d probably never get there.”

What are the common threads across the seven people we now say have been cured?

“All seven people who were cured had stem cell transplants, but we’re not entirely sure that it’s the transplant itself that cured them. These are very complex cases, and several of the transplants were done in slightly different ways. At least one of the cures was done with a donor who didn’t have the CCR5 mutation, which had been a key factor we thought was required. That opens up a whole new pathway of thinking about what may be possible in the context of cure. We’re now seeing that it might not be the CCR5 mutation—or even the transplant alone—but possibly something like graft-versus-host disease playing a critical role.”

What makes stem cell transplants too risky to scale?

“Stem cell transplants are a very complex and often dangerous procedure that’s mostly intended for people with cancer. For people living with HIV, the risks associated with stem cell transplants often outweigh the potential benefits. You’re talking about significant mortality risks and complications that would be unacceptable for the general population. That’s why we say these aren’t scalable solutions. The goal now is to understand what made those seven cures work and find safer, simpler ways to replicate the outcome.”

So what is amfAR actually funding right now in terms of cure research?

“There are two major schools of thought around curing people with HIV. One is the ‘shock and kill’ approach, where you’re trying to reactivate the virus in reservoirs so it can be destroyed. The other is gene therapy, which is really where our focus is right now. That includes gene editing tools like CRISPR, but also approaches that try to mimic the CCR5 mutation and basically ‘close the door’ that HIV uses to enter cells. We believe gene therapy holds the most promise for a scalable cure—not just for people who happen to have the right genetic match or the right clinical scenario.”

Why is it so difficult to declare someone “cured” of HIV?

“You can’t prove the absence of something. Even in the seven cases widely accepted as cured, we can’t say with 100 percent confidence that they have no HIV left in their bodies. What we do is follow them over time. If there’s no evidence of viral replication and no virus shows up in biopsies after, say, 18 months off treatment, we become more confident. But it’s not like flipping a switch—there’s no biomarker yet that tells us when someone’s definitely cured.”

What’s standing in the way of long-acting injectables like Apretude reaching more people?

“I’m tremendously frustrated at our collective inability to deliver Apretude to the people who need it most. Insurance companies and pharmaceutical companies are standing in the way, and I don’t think we've done a very good job on the rollout. There’s also a tremendous amount of back-office work required at clinics—approvals, testing, regulations—that make it even harder to prescribe. Some clinics have just stopped offering it entirely. I think if you talked to anyone about Apretude, they’d tell you that it's far underperformed what they thought it would do once it became available.”

So what gives you hope?

“I don’t believe you’re ever going to wake up one day and see a headline in The New York Times that says ‘Cure for AIDS Found.’ Research rarely works that way. What I’ve always said is that there will be three phases: first, we cure some of the people some of the time; then, more of the people more of the time; and eventually, most of the people most of the time. That’s how progress happens. It’s incremental, but it’s real.”

How can platforms like Grindr help in this effort?

“A site like Grindr could serve as an early warning system. Let’s say there’s a rise in HIV cases in Tennessee—Grindr could push a targeted message to users there saying, ‘Here’s what we’re seeing, here’s how to protect yourself.’ It doesn’t have to be complicated. It just has to be clear and localized. The power to reach people where they are—that’s what makes platforms like this so important in the fight.”

If you could tell the world one thing about HIV, what would it be?

“It’s just a virus. And what I mean by that is, HIV stigma so often gets wrapped up in the behaviors that lead to infection—especially sex. But who cares? If it was sex, so what? People shouldn’t be stigmatized because they had sex.”

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