The subtitle of your book includes the words “tamed AIDS,” and the epilogue talks about the last red-hot days of the AIDS epidemic and the era of protease inhibitors. Where do you see things standing now as far as the AIDS epidemic is concerned?
The exciting news—and that’s what the book is about—that it’s possible to survive an HIV infection. It is exciting to note that 18 million people are alive on those drugs today. But that’s only half the number of people who are infected. Without the drugs, they will experience an HIV infection the same way we did in the plague years here in New York. So, access to health care and access to medication are key to saving lives.
The other aspect is that the epidemic is still growing. We still have nearly the same number of transmissions in the U.S. every year that we had in 1996 and 1997. That is a failure of the public health system to get information to people that empowers them to remain negative and to bring people into health care who are infected and get them on effective treatments, so they would be rendered no longer infectious. Two very simple goals—at least simply stated goals—but in order to get there, we really need political will that hasn’t been mounted in the last 15 years.
Photograph by Ken Schles
Do you fault the Obama administration for not doing enough in this area?
It’s fair to say not enough, because we haven’t dented those significant numbers. We have brought the number of people who die down to relatively low numbers, but that was true at the beginning of the Obama administration.
Do you think that has happened for lack of activism?
I don’t think anything can be blamed on a lack of activism, frankly. I think activism can take credit for the things that it accomplishes but shouldn’t be held to account for the things that it wasn’t able to accomplish.
It’s going to take a mountain of activism to try to open up the health care system to the people who are most at risk. In this country, it’s mostly people in the South; it’s almost exclusively people of color. They are mostly queer. The most at-risk population is transgender women. And they’re mostly extremely young, under the age of 24. That’s where the epidemic is still raging, and that’s a population of people who are utterly disenfranchised from the health care system.
If we were to bring them into care and build a system and pathway for them to enter care, we could arrest the epidemic right there.
In the book, you write a lot about the missed opportunities for preventing and treating the opportunistic infections associated with AIDs. In the history of the plague, that seems to have been a major fork in the road? Was it a turn that should have been taken?
Of course it should have been taken. It was plain from, at least by 1982, that people were not dying of AIDS. They were dying of a cluster of opportunistic infections. For most of those infections there were already theories in place about prophylaxis. Many of them didn’t have any treatment ideas, but the prophylaxis ideas—the prevention ideas—were solidly in place.
We knew what it was like to be immunocompromised before AIDS. We knew that largely from the world of organ transplantation where drugs are given to suppress the immune system in order to avoid rejection. And in that model, we saw many of these opportunistic infections, chief among them, pneumocystis pneumonia [PCP], the most perilous of the opportunistic infections and the cause of deaths of most people with HIV infection back then.
There were demands on the part of activists to the public health system and public health service to set standards of care that would teach doctors across the country how to keep their patients from getting PCP, and therefore, to keep their patients from dying. And that was rejected time and again by the NIH and the leadership of the NIH.
Particularly Anthony Fauci, correct?
Specifically, Anthony Fauci. And what I found when I was reporting the book—I was able to prove the many times that activists went to him and implored him to send out alerts to physicians about preventing PCP. And the many times that he rejected that call—for various reasons. He rejected it mostly by saying there’s no study that proves that the drugs that prevent PCP in transplantation will work in gay people with HIV. And so, the activists said, “Call for a study,” and he said, “I’m not in a position to tell people what to study.”
That series of rejections, that twisted argumentation, masked a total disregard for the lives of the people who were dying of the disease. From the first time he was first implored to do this until he actually did it, almost 17,000 people died of PCP. That’s a crime.
Has he responded to your book?
He has not. But I’ve spoken to him about this in the past, and he takes no personal responsibility for it. None.
One of the main personalities in your book is Joseph Sonnabend.
And he’s wrong for the right reason.
He was saying that in a situation like this, don’t aggregate these things. Separate these things. There were all these systems that were being impacted, and all these diseases that were being manifested, people with HIV infection—or people with this immune disorder; it was well before we identified HIV. And he said, “Don’t throw everything behind the chase for an exciting new bug.”
You’re almost certain to be given some sort of award for discovering a new virus. And he was saying, “F--- the awards. Let’s find out what’s happened to the individuals in their bodies, and let’s find ways to keep him alive.”
In the end, he hardened against the possibility of a retrovirus causing this kind of harm in people. Ultimately, he reversed that position, but for a long time, he was kind of overstating his opposition to the virus.
Meanwhile, however, I have to point out—and this is all anecdotal—I don’t believe any doctor in the world kept patients alive longer than he did.
Your book is about the history of activist politics and science. In this publication, we write a lot about insurance coverage. You touch on that—that people hid their status to get around pre-existing conditions, etcetera. Do you think lack of insurance and the way health care is paid for in this country was a factor in AIDS blossoming into such a fearsome epidemic?
We saw the plague develop first among affluent gay men in New York, San Francisco, and Los Angeles, and in a couple capitals in Europe. They were men who were well connected with their medical networks and could afford medical care.
By the very late ’80s, the epidemic exploded in a population of people who were in just the opposite kind of demographic—poor African Americans and Latinos and the IV drug–using population. That’s where it really caught fire.
If we had had a health care network—including insurance—back then that would have been working with that population—and I can guess that population was probably 80% or more uninsured and unconnected to health care—we wouldn’t have seen it explode to the proportions that it did. Seven hundred thousand people—American people—have died of AIDS in the past 30 to 35 years. The majority of them were on the outside of any aspect of insurance in health care.
What do you think about what Trump and the Republicans are planning to do with the ACA and repeal and replace? Do you think that’s going to make the AIDS epidemic worse in this country?
I don’t know what their affirmative plans are, so I can’t really speak to them.
The ACA was a start, a good start, but it didn’t solve the problem of reaching the most unreached populations in the AIDS epidemic. We know how to stop the spread of HIV. We can stop it. And we do that by bringing people who are infected into care and making them not infectious. It’s that simple.
ACA was not able to do that, and I have no idea what Trump’s people are thinking about for replacing it. But we do know that almost every one of his cabinet level appointees has a solidly anti-gay and anti-transgender mindset and philosophy. And knowing that’s where this epidemic is still being ping-ponged around, I doubt that we’re going to see an investment there to keep that community safe.
The issue of drug approvals and drug testing is a fascinating part of the story that you tell—the push to get “drugs into bodies” and the counterpush for quality research. And then the Concorde study comes out, showing AZT wasn’t nearly as efficacious as many thought. You’re probably aware that people are now talking about deregulating the FDA and faster approvals. How do you see what’s going on now and the era your book covers?
It was a very similar era. It was Reagan’s America, in which deregulation was the guiding light. And one of the areas where the Reagan administration took its aim was at the FDA. They believed that the FDA was unnecessary, in large part; a red tape machine for drug marketing. And the activists initially sided with them. They used that. They used the pages of the Wall Street Journal to continue their campaign to get access to whatever drugs they deemed would be helpful to them. And that was, to their defense, absent any actual research. There was no research being done in the early days of the epidemic. Literally, four years before anybody opened a test tube to try to figure out if they had a compound that would work against the retrovirus.
Those campaigns made sense, but as activists became more educated and more certain of what they needed to come out of Big Pharma, they realized that they needed a very strong FDA to keep harmful drugs from getting out to people and to keep drugs from dominating the market just by having worked their way through the system quickly without proving any sort of long-term efficacy.
Activists realized they needed a very strong FDA to keep harmful drugs from getting out to people and to keep drugs without proven long-term efficacy from dominating the market.
We saw it happen. So, AZT in 19 weeks, or however long that first study was, seemed to have this great impact. And the FDA cut off further study with AZT, and approved it and sent it out to the market. And for almost 15 years, AZT dominated the AIDS treatment marketplace, without anyone knowing what the long-term impact of the drug would be. And it took that European study, the Concorde study, to show finally that it had no positive impact on longevity, in any way. Meanwhile, a lot of research into more palatable drugs was stymied because the marketplace was cornered. And given that realization, when the protease inhibitors came to market, the activitists did what they could to strengthen the FDA and making sure that they’re not approving a drug without really knowing what it was going to do.
So, I think that’s the environment that we’re going to find ourselves in again—sick people feeling initially like they might benefit from a deregulated FDA, but in the long term, not benefitting.
One legacy of the AIDS epidemic is that patient groups are now involved in drug development. But there’s some concern that some groups have been co-opted by pharma.
I’m very excited by the fact that almost every pharmaceutical company has a community advisory board—a CAB—and brings the voices of the patient population. It’s essential that they be there to advise the researchers, but also to bring really detailed news back to the affected community.
There’s always a potential for co-optation, but that’s certainly no reason not to continue engaging in these areas. It might be an argument for letting the community that’s impacted appoint their own CAB members, and that’s what people in HIV demanded in the early years and won.