The AIDS Crisis: Episode 8 - No Harm

Hey, this is Leon Napok. I'm the host of Fiasco, but you may also know me from the podcasts Slowburn, Think Twice, Michael Jackson, and Backfired the Vaping Wars. I'm excited to be sharing with you the next season of Backfired, titled Attention Deficit, which is now available exclusively on Audible. Backfired is a podcast about the business of unintended consequences.

The Surgeon General today prescribed education children he feels need to be yarned in school about the danger of AIN.

Now many people are not receiving information that is vital to their future health and well being.

Researchers say, a new class of drugs are working.

A cure for AIDS may soon be a possibility.

Felt like some grand act of mercy made manifest when we decided to make a season of Fiasco about the AIDS epidemic. The arrival of the Triple Cocktail in nineteen ninety six seemed like a natural place to end our story.

The most optimistic note since the terrible disease was first recognized.

These new so called to wonder drugs, the Triple Cocktail represented a monumental turning point, a bookend to the era when HIV meant certain death.

A new combination of drugs, including a new class called proteation inhibitors.

From the discovery of the earliest cases of AIDS, people had been imagining, dreaming of something like the Triple Cocktail, a medicine that could overpower the disease. It was easy to assume that the war on AIDS would be one with the development of a successful treatment.

I've really had about as close to a miraculous recovery, certainly more so than I ever imagined I would see.

But the Triple Cocktail did not end the epidemic. While it helped people who were already sick, new people kept getting infected, about fifty thousand the year after the Triple Cocktail became available, in fifty thousand more the year after that. In the decades since the treatment was introduced, nearly one million people in the United States have been diagnosed with HIV. And So, in this final episode of Fiasco, season five, I want to get into some of the reasons why

I want you to believe that we can make America work again.

To tell this part of the story, I want to go back to the early nineties, when a Democrat from Arkansas was running for president and promising a new approach to the AIDS crisis.

I think most Americans still don't know how many people are out there who are HIV positives.

If nothing else, Bill Clinton was willing to talk about HIV. Unlike his Republican predecessors, Clinton seemed less inclined to minimize or ignore the problem.

The president should type responsibility or the problems of the country and be honest enough to say, we might not solve them in a year or two, we may not solve them all in four years, but at least we're going to roll off our sleeves.

And go to work.

Let's get to work, Clinton for people for a change. At this point, scientists were still years away from developing what became the triple cocktail, but that didn't mean there was no progress to be made. After all, treating people who already had HIV was only one front in the war on AIDS. The other was preventing people from getting it in the first place, and that was hard for reasons that had nothing to do with science or medical research.

Anytime you're talking about sex and drugs.

It's a moral issue.

We need to crack down on drug abuse, not promote more drug addiction.

But we don't want people to use drugs. Well, that's great, there's no easy way to do that.

We had a strategy that would save people from getting infected.

And the question is why aren't they acting.

On this week's season finale, a new administration promises to turn the page on the HIV AIDS epidemic and instead gets wrapped up in old arguments about sex, drugs, and morality. Ricky Blutenthal was living in Oakland, California, studying sociology at Berkeley, and he came face to face with HIV. The year was nineteen ninety.

I was getting a PhD because I was interested in the problems of what we were then calling interstiti black people.

Blutenthal had started his research with a focus on gangs and drug distribution. Now he was part of a team that was studying the prevalence of HIV in people who used drugs in the Bay Area. Their data collection effort was centered on a neighborhood about twelve miles outside Oakland called the Iron Triangle.

And it's called Iron Triangle because it's there's a triangle formed by rail lines that cut through the community. It's like a very common thing that happens to historic African American neighborhoods, where they get split up and divided by undesirable infrastructure.

Blutenthal knew that racial disparities and health outcomes were structural and that if properly understood, they could be undone. By studying drug use and HIV and the Iron Triangle, he saw an opportunity to use social science to actually help people.

I had an advantage in that, you know, I'm African American, so I felt comfortable working in the community and being respectful engaged with people. So I didn't come in with a lot of hard attitudes about any of it, about drug use, about HIV, and so that gave me a chance to learn and then try to be responsive to the problems people were confronting.

As part of the study, the researchers administered HIV tests to lots and lots of people who used injecting drugs. At one point, it fell to Blutenthal to give a group of study participants the results.

You know, I had like a series of seven or eight counseling results that I had to share, and everyone was positive, and I just started crying. Remember, you know, this was a context of you know, it was five years before we had effective treatments for HIV, so essentially we were handing what felt like death sentences. I mean

What Blutenthal decided to do about it was help start a program in Oakland where people who used injecting drugs like heroin could obtain clean syringes for free instead of sharing contaminated ones with other people. It was a model that first gained traction in the Netherlands and crossed over into the United States in the mid eighties.

There are some cities where groups of individuals have set up privately run exchanges.

Me a heroin addict is a bad nothing.

I don't really feel I want to get AIDS to say, the clean needles work for me.

The premise of needle exchange was straightforward. When people who are using drugs together syringes, they end up sharing blood and if one of those people has HIV, the rest are at extreme risk for getting it to The reason so many people were sharing syringes was that they were hard to get, and the reason for that goes back to the War on drugs, which began under Richard Nixon in nineteen seventy one.

America's public enemy Number one in the United States is drug abuse. In order to fight and defeat this enemy, it is necessary to wage a new, all out offensive.

Nixon's offensive led to a host of new laws around the country aimed at making it harder for people to use drugs.

There was a bit of a cannabis or marijuana panic in the late seventies, so the Department of Justice developed a model drug paraphernalia law that was really focused on cannabis.

Marijuana has become so widespread that virtually anyone is likely to be a user upon its site.

There was no such thing a safe.

Marijuana, So they wanted to get rid of roach clips and shut down the smoke shops. But in the course of doing that they added other things, right, and one of those other things they added was syringes.

Selling syringes became illegal in most states, and some states even banned possession before long. Syringes were extremely hard to come by, and those who needed access to them multiple times a day started sharing them with each other. Unsurprisingly, that had some major health consequences, and as heroin use rose over the course of the seventies, some injecting drug users in New York City started coming down with a

In the United States, the focus was on sexual minority men, and for good reason. The problem we had then we still have a problem now, which is that people who inject drugs aren't a particularly sympathetic group, and unlike sexual minority men, they're not able to mobilize politically at the same level.

The earliest needle exchange activists in the US knew that what they were doing was illegal. They were distributing drug paraphernalia. Their hope was that local governments would see the good in it and potentially even take over the exchanges themselves, but that wasn't going to happen without a struggle.

Handing out needles is illegal throughout most of the country.

Many people believe that keeps attics addicted. To many politicians and government officials, change sounded a lot like enabling drug use.

It sends a terrible message that we are encouraging people, or we are at least accepting the fact that these people are are drug users and not doing very much to get them offer.

It's almost like throwing in the town.

In nineteen eighty eight, President Reagan signed a law that banned federal agencies from providing funding for needle exchange programs. Here is Reagan's Surgeon General see Everett Coop explaining the politics around the decision.

It's very difficult even with people who are quite reasonable about the problems associated with AIDS, they can bring themselves to countenance a program that seems to aid and a bet an illegal and an mral practice, namely IVY drug abuse.

The funding ban put a very low ceiling on how widespread needle exchange could become. According to the text of the law, the ban could be overturned, but not until there was definitive evidence that needle exchange reduced the bread of HIV without simultaneously increasing drug use. As public health experts set about conducting that research, small locally funded exchanges continued to pop up around the country. The program, co

So we just set up a table. We have educational information condoms, clean cotton, and then there'd be a big red bucket to collect the use syringes in, and then we'd have our cases of clean syringes.

That was the system. Bring used syringes, toss them in the big red bucket, and leave with one clean syringe for each one you brought with you. Bluthenthal and his team distributed thousands of syringes during the first few months of the Oakland program. Through it all, they got no support from any government agency. In fact, they did their work knowing they could be arrested at any time. Until government officials at the local, state, and federal levels embraced

I was born in a little town called Hope, Arkansas.

After twelve years of Reagan and Bush, many AIDS activists thought there was at least a chance that the Clinton presidency could be different, to.

Change all our people's lives for the better and bring hope back to the American dream.

After he was elected, Clinton took steps to signal his commitment to public health one was to task his wife Hillary with shaping his administration's approach to healthcare. Another was to nominate an unapologetically progressive doctor named Joycelyn Elders as surgeon General.

I was a sophomore in colleague when I realized that I wanted to be a doctor.

Growing up in rural Shawl, Arkansas, population ninety.

Nine ninety eight, when I'm in little Rock.

Elders didn't know anyone who was a doctor, and she got very little health education at school, you know.

For I learned the most about sex education of really more about menstruation and now was from the leaflet that co Texts put in the cotext box.

Elders went to medical school and became a pediatric endochronologist. In nineteen eighty seven, while Clinton was governor of Arkansas, he put her in charge of the state's Department of Health. By that point, AIDS was affecting people of color at twice the rate of white people. Black women, in particular, were twelve times as likely to contract HIV as white women.

I began called the condom Queen, and in fact I had condom tree on my desk.

Wait, what's a condom tree?

Well, it was a rubber tree, a tree that the nurses made for me, the public health nurses condoms of all different colors, Christmas tree, and sat in the middle of my conference table.

And so you could take what if you wanted to one.

No, they couldn't take them off my tree.

But then there was plenty of them sitting out in the condom bow out in the office that you could just reach in and grab them.

Elders made it a point to try to reach people who had been overlooked in a lot of HIV prevention messaging. She found that most of her ideas, particularly on sex ad and the distribution of condoms, were wildly unpopular in Arkansas.

Anytime you're talking about sex and drugs, it's a moral issue rather than a public health issue.

And that has made doctor Joycelne Elders Arkansas's most controversial woman.

That wanted to tell me how God was going to strike me dead and stuff like that.

This nation, not just our exult.

Sex education is chronography, and.

I felt that they were concerned about what they were concerned about. What I was concerned about, the young black girls that I was seeing lost in the Delta, that was being abused because of lack of education. Nothing could keep me from worrying about it and doing everything I could to make a difference. I had trouble sleeping at night, but I was determined that we were going to do something to make a difference.

Governor Clinton at least seemed to appreciate Elder's willingness to dive headfirst into controversial issues, and when he became president, he once again called on her to serve in his administration.

Doctor Joycelyn Elders, the former health commissioner of Arkansas now President Clinton's choyce for Surgeon General of the United States.

Almost immediately, Elders became a lightning rod for scandal. A few months into her tenure, she caused a media frenzy by suggesting that the legalization of drugs could be good for society.

And I do feel that we would marketly reduce our crime rate if drugs were legalized.

And conservatives immediately jumped on Elders' comments. A right wing lobbying group circulated petitions to request her dismissal. Eighty seven House members signed a letter calling on Elders to resign. Rush Limbaugh mocked her on his show.

Your Time Off for a Little Comic Relief, America's number one national embarrassment speaks for herself. Here's Joycelynd Elders and her theories on legalizing drugs.

Here's Elders responding to the criticism at the time.

Despite many of the comments and editory and reports that's been about me, I'm still grateful because you see, if I was walking around not saying anything that was at all controversial and that was all neutral, first of all, you wouldn't write about me. Secondly, if it was something that was right and simple and easy and everybody accepted it as a matter of fact, it would already be done.

Legalization may have been a pipe dream, but need to exchange was at least a somewhat more realistic policy idea. To Elders, It's potential for slowing the spread of HIV was obvious.

If somebody who has HIV uses the needle and then you use the same needle because she does say you can't afford to buy them, well, then you were injecting the virus into your body and you may not know that for a year, two or ten.

So that was why Baby.

Bolt needle exchange program, and then that reduced a lot of the HIV spread in a community.

As Surgeon General Elders says, she always supported needle exchange and understood what it meant for programs to have to operate without support from the federal government.

Some communities had really gotten tiny little grants, like from churches and other places, and they were passing out train needles from the trunk ofbec car.

During the campaign, Bill Clinton had indicated that he was open to lifting the Reagan era funding ban on needle exchange programs, but if the model was going to win the administration's blessing, activists would need other players in Clinton's orbit to push him on it. That included Donna Shalela, Clinton's Secretary of Health and Human Services.

We saw needle exchange as a mitigation strategy to reduce the incidents of AIDS and to save lives. Excuse me if I could interrupt for one moment. I've got to let him in here. He is you should know. My dog is named Fauci. Really yeah, he's a rescue dog.

Hi Fauchi.

When I went to pick him up, they said he had run into an Italian restaurant and he needed an Italian name, and I said, I'll call him Fauci. Tony said he'd been called worse.

Before she joined the administration, Donna Shalala had been the chancellor of the University of Wisconsin. She says the job prepared her for the pressure she faced from AIDS activists as HHS secretary.

I knew that we were going to be pushed by act UP and all of the groups who were in a desperate state, So that was expected as part of the job.

I was a political scientist.

I have been leading major research universities, so people getting into my face was something that was expected.

During Clinton's first term, Salela enraged AIDS activists by suggesting that more research was needed to determine whether the Needle Exchange Funding Band should stay in place. The administration's stance on the issue became a kind of litmus test for a lot of activists, a sign that Clinton was willing to slow walk certain policies that posed a political risk. Here is a protester confronting Clinton about it at an AIDS event.

There's been steps taken here advocated to be taken, like legalizing needles have been talked about for three years?

Where have you been? Didn't you listen to what we said before about what we've done?

Last night?

Skeptics of needle exchange continued to insist there wasn't enough empirical evidence that the model worked and that it didn't result in more people using drugs, But the opposition was often about more than just data. For many, was rooted in a fundamental concern at the core of American drug policy. Agreeing to provide people with drug paraphernalia would mean acknowledging that the zero tolerance, just say no approach to drugs

There's no question that the right signal for the government of the United States to send is to say to somebody, if you're a drug addict and you need to use intravenos drugs, come into a center and let us help you get off drugs.

This is former House Speaker Knut Gingrich weighing in on the needle exchange debate at a press conference.

That is the only message, we should give drug addicts, but the government's job is to help you get off drugs. It is not the government's job to try to make killing yourself marginally safer as you do it.

It wasn't only Republicans who opposed the idea of undoing the ban. Members of Clinton's own party were apprehensive too.

There was a debate within the Democratic Party. I mean, you cannot say that this was just the Republicans. The party itself was torn on the issue because of drug addiction and because of crime related to drugs.

Not all prevention measures were so fraught, as HHS Secretary Donna Shalala focused a lot on public health messaging through popular culture.

Thank you all for coming AIDS is often thought of as a hopeless problem. Today we are here to talk about solutions.

In early nineteen ninety four, Shalala announced a prevention initiative at the Clinton administration had developed with the CDC. It would include a series of PSAs starring celebrities like Jason Alexander and Martin Lawrence.

This campaign is focused on young adults because studies tell us that young Americans are more sexually active than ever before, and they are not taking proper precautions.

So it was very important for us to approach young people. So we went to the entertainment industry, but mostly to the raps and to the music industry. We literally needed everybody the communicated with young people to educate the entire society about AIDS.

I'm Anthony Ketis of the Red Hot Chili Peppers, and I've been naked on stage. I've been naked on magazine covers. In fact, I was born naked, And of course I'm naked whenever I have six. And what I have here is a condom, a latex condom. I wear one whenever I have six, not whenever it's.

The Clinton administration's media push coincided with another leap in the growing public awareness of HIV and AIDS. Much like Rock Hudson years earlier, several famous people disclosing their diagnoses changed the public understanding of what HIV was and whom it could affect. The most famous of these was NBA legend Magic Johnson, who had revealed his diagnosis back in nineteen ninety one.

I think sometimes we think, well, only gay people can get it, only is not going to happen to me.

And here I am saying that it can happen to anybody. Even later, there was easy E from NWA, just.

Like Magic Josson when he thought it. You know well, stuff like this happened.

Agency to come out speak and let other people wherever. So you know what I'm saying, we can try to contain this stuff that was getting bad, you know what.

There was also Pedro Zamora, the activist who appeared as a housemaid on MTV is the Real World in nineteen ninety four.

I will probably not see the AH thirty.

I will probably die.

As Elay dying. Even the President called, I just want to tell you.

I was thinking about you, and tryan for He might not be able to answer, but he understands everything.

Okay.

All these disclosures went a long way towards educating the public about HIV risk and prevention, but activists were frustrated that the policy changes Clinton had seemed to support as a ended it weren't materializing faster in his presidency, and after the nineteen ninety four midterm swept in a new conservative Congress, the political possibilities seemed even more limited. As the activist Sean Strube wrote at the time in his magazine for people with HIV. This administration's priority is all

This is World Age Day. There were ceremonies and observances around the world, but very little in the way I've encouragement.

The seventh annual World Aid's Day took place on December one, nineteen ninety four. As part of the event, Surgeon General Joycelyn Elders was invited to speak and answer questions from the press at a United Nations forum.

Yeah.

I don't think the speech I gave was necessarily that earthshaking. But a psychiatrist asked me about masturbation.

I think that that is something that it's a part of human sexuality that perhaps should be taught, and I feel that we have tried ignorance for a very long time, and it's time we try education reguard to masturbation.

Elders didn't think anything of it. It was the kind of thing she said all the time to all kinds of audiences.

Doctor Joycelyn Elders proved once too often that speaking your mind, especially on issues as sensitive a sex, education and sexuality, could be very bad politics, especially with the Republicans breathing down the President's neck as they are.

Within days, Elders was being pummeled in right wing media.

Why does the president keeper? I assume he shares our values.

I assume he thinks it's okay.

For Clinton and his political advisors. It was the last straw. A little more than a week after she made the comments about masturbation, Elders was forced to resign.

Doctor Elders was fired today by President Clinton. In a letter to the Health Secretary Donachileela late this afternoon, doctor Elders writes, President Clinton and I maintain our strong mutual respect for each other. She also says that as a private citizen, she intends to continue speaking out on the public health causes that are as she puts it, dear to her.

Here's Elders talking about her firing the week it happened on this day show.

Yeah, I really thought that all of the comments I made were true and you know, I think that the country needs to approach many of these issues. And the longer we wait, I feel, the more children we are going to lose. And I don't feel that, you know, I should start second guess in my life self today.

After she left Washington, Elders returned to her home state. She became a professor at the University of Arkansas and toured the country as a speaker and educator.

You know how I was.

I never tiptoed around very much. I just said what I thought and believed. I was sorry, you know, to have lost the position. Now I'm not saying that, but the next five years so I was all over this country, talks it all over the time.

Yeah.

In fact, that was all I did, was running around running my mouth.

On one occasion, Elders told an audience that she regretted not advocating more firmly for needle exchange while she was in government. Politicians, she said, should drop all this crap about not using federal money for needle exchange programs because they don't want to support IVY drug use. Is it all right? She asked to support death.

Good morning, and welcome.

In nineteen ninety five, the year, after Joycelyn Elders was fired, Clinton appointed a brand new, twenty three member Advisory Council on HIV and AIDS.

I'd like to begin by thanking all of you for your service on this advisory council. We need your advice, your wisdom, your enthusiasm. You're urging an American najor service, and I thank you for it very much.

As you know, both the Reagan and Bush administrations had appointed their own advisory councils to make recommendations about the epidemic, and both times members had resigned publicly because so little of their advice was taken. Clinton's new council was meant to signal that he was going to do things right this time, and that, unlike his predecessors, he would actually listen to the experts. One of the members of the new AIDS council was a lawyer from Chicago who had

I was just a regular person. I've loved politics all my life, and I had met Clinton and.

Really thought he was terrific.

After Clinton won, Fogel thought about trying to become an ambassador but his wife nixed the idea of a family move.

So I looked at boards and commissions, and AIDS was a big issue, and I thought, you know, I can pivot away from being the trial lawyer guy. I can do, hopefully something that would be useful and contributory to the well being of our country. So I figured I would ask if I could be appointed to the President's Advisory Council and HIV AIDS.

When Fogel showed up to a hotel in Washington for the council's first meeting, he realized right away that he was the odd man out.

The night before our first official meeting and swearing in, we made a circle in the little meeting room in the basement area and introduced ourselves. I was almost a little embarrassed at how little I really knew compared to everybody else.

The other council members were medical professionals or had long personal histories with AIDS activism. The person who introduced himself right before Fogel was an activist with HIV who had spoken at the Democratic National Convention.

One of the things he said was, you know what, you know, we've been pushing Clinton to do stuff related to AIDS make it a focus of his administration, and frankly, he figured, he'll give the straight white guys in the suits one more opportunity to get it, and if they don't, then he would be done with them.

Then it was Fogel's turn to speak.

And I said, well, I'm one of those people, and I'm here to learn, and if I end up getting it, then there's really no reason why the straight white guys in the suits in the White House shouldn't get it either.

As part of his work on the Advisory Council, Fogel was briefed on the connection between intravenous drug use and HIV. It was clearly a huge problem. By that point, ivy drug use accounted for about a third of new HIV cases in the US, But when Fogel learned about needle exchange, he was extremely skeptical.

When I first heard about needle exchange, it was like, are you kidding me? You want to give needles to drug addicts. Aren't you promoting the use of drugs? There must be a different or better way to deal with this issue.

But as Fogel learned more, he started to take a different view. Back home in Chicago, he met with an activist and drug user who ran in exchange.

You know, I asked my I would say, straight white guy in the suit sort of questions, you know, gosh, you know, why are you doing this? And why does this work? And what are the benefits? And aren't you afraid of you know, those sorts of things, and so, you know, it began to make sense. It wasn't just

Back in Oakland, Ricky Bluthenthal continued to run his needle exchange. Over time, he had become an expert on harm reduction, the idea that drug policy should be focused on reducing the negative consequences of drug use as much as possible, rather than trying to punish or restrict people out of addiction. Bluthenthal felt that the scientific evidence and the moral imperative were aligned, and if other people couldn't see that, then it wasn't necessarily worth trying to engage with them.

The people arguing against these programs aren't even in the same universe as far as I'm concerned. They're dealing with a set of problems that have nothing to do with the individual that I'm talking to. Cross the way. They're living in a world that's full of moral fictions and fear that misunderstand the harm that's done by substances and communities.

From Bluthenthal's perspective, those who opposed needle exchange on moral grounds were simply not interested in HIV prevention.

The people arguing against us were fine with people dying from HIV AIDS. There's no a solution, right, so they're like, oh, we don't want people to use drugs. Well that's great, you know, there's no easy way to do that. And the things that you've been doing at that point for twenty years we now know definitively don't help.

But as long as the laws didn't change, need to exchange volunteers continued to risk arrest. In nineteen ninety five, Bluthenthal and several of his colleagues went on trial for distributing drug paraphernalia. Blutenthal says he was confident the jurors would find him to be a sympathetic defender.

I was a young African American man getting a PhD at UC Berkeley, and I had a bunch of evidence on my side, So you know, I think there were a lot of people in the jury box you're reading for me.

After deliberating for four hours, the jury found Luthenthal and his colleagues not guilty on the basis that their work was a benefit to society. It was the third time the County DA had tried and failed to prosecute needle exchange activists. For all the worry that needle exchange was politically deadly, it seemed to have grassroots support within the communities that actually had programs, but reversing the ban on federal funds still didn't seem to be a priority.

Never again, should Washington put politics and party above law and order.

From the start of his presidency, Clinton had always gone to great lengths to position himself as a proponent of law and order, not some hippie, as he was often portrayed, but someone who took the drug war seriously, just like Reagan and Nick and had. After Republicans took control of the House and Senate, Clinton felt he had even less

Are scientists on the verge of making AIDS a manageable disease.

There was positive news on that issue, but some caution too. When the Triple Cocktail was announced in nineteen ninety six, the whole outlook of the AIDS epidemic shifted. Over the following year, the mortality rate for people with AIDS in the US dropped by almost fifty percent.

We have a lot to celebrate. For the first time since the epidemic began, deaths due to AIDS in the United States have declined for the first time. Therefore, there is hope that we can actually defeat AIDS.

And yet, there were still more than fifty thousand new cases diagnosed that year, and the racial disparities were only getting more stark. In nineteen ninety six, forty one percent of infections were diagnosed in Black Americans, even though they only made up about thirteen percent of the country's population.

More and more African American women are being infected through heterosexual contact.

Their children are also at risk. In nineteen ninety seven, the CDC released a major study concluding that IV drug use was the primary driver of new HIV infections. Expanding needle exchange and reversing the ban on federal money had never seemed more urgent. Here again is Bob Fogel, the trial lawyer who served on Clinton's Council on HIV and AIDS.

The benefits of federal funding is that bypasses the states, the governors or the legislatures, and programs could be set up where needed in cities and states where it otherwise wouldn't occur. And the federal government has the deepest pockets you know. For the federal government to put five hundred million dollars or one hundred and fifty million dollars into natal exchange programs would have been huge. I mean, they could have started programs and a lot of major cities across the country.

The President's Advisory Council on HIV AIDS was in complete agreement that the federal government should fund needle exchange. They had said as much in a formal recommendation, but the White House made no moves to follow through. Fogel was losing his patients, and.

The question is, why aren't they doing something so important? Why aren't they acting? Why aren't they responding? I mean, are we just you know, in my head, are we just a phony front? And you know, at that point, it's like, are we wasting our time?

You know?

And if they're not going to follow our recommendations, let alone this one in particular, then let's just quit wasting you know, time and money. So yeah, I was pissed.

Frustrations reached a boiling point at a council meeting in July of nineteen ninety seven. Members of Act UP interrupted the meeting, demanding faster movement on a wide variety of issues. After the protest subsided, Fogel spoke up in solidarity.

And I raised my hand and I said, look, we've made multiple recommendations on this that appear to be ignored. No action is being taken. There's no good reason for not taking action, and perhaps maybe what we ought to do is just resign on mass in protest, and somebody across the room yelled, I second the motion. The press people that covered our meetings, you know, jumped up like

After the meeting ended, the council chairman pulled Fogel aside.

And said, great job. This is terrific. You know, the press is going to run with this. This is really going to put pressure on them.

Some harsh criticism today for the President and it comes from his own advisors on AIDS.

Especially critical of the administration's failure to fund programs for drug addicts to exchange dirty syringes for clean ones to help.

I remember my mother called me a few days later. She told me she read about me in the Springfield Union and which is in Springfield, Massachusetts, and she was so proud of me. I said, Mom, I want to give needles to drug addicts. She said, well, if you think it's the right thing to do, I'm for it.

In the spring of nineteen ninety eight, the year's long pressure campaign on Clinton to reverse the funding ban appeared to finally be working. It had been almost a decade since the ban was put in place and it was set to expire soon. If the administration wanted to make

I made every argument I possibly could. He knew what the arguments were. He had a letter in his hand from all the scientific leaders and public health leaders of the department.

Still Clinton wouldn't commit. At one point, Shilela says the White House urged her to hold off on certifying the research. Instead, they wanted her to suggest that the efficacy of needle exchange was still up for debate.

Someone from the White House called over and said, tell Schalela to announce that we needed more research. And I said, I will not repeat on this program what I said, but basically I said, no, that was ridiculous. I was not going to say the researchers we needed more research. When they said the research was clear. This was a matter of integrity for the apartment and for me personally.

Shalela was confident that the President understood the science just as clearly as she did. If anything was preventing him from embracing needle exchange, it wasn't the quality of the research. It was politics.

Delay.

Delay meant to me they we were making a political calculation. It wasn't substantive, and the call that maybe Shililah should say we need more research was the tip off.

Shaleala was resolved to publicly validate the idea of needle exchange, regardless of what Clinton decided to do, so her office scheduled the press conference from Monday, April twentieth. Schalela's hope was that by the time she took the podium, Clinton would have made up his mind to undo the ban.

The President could lift that ban if he could certify with scientific evidence that such programs reduced the rate of HIV infection without encouraging drug use.

Scientists and activists who had been advocating for needle exchange were told to expect good news, but Shilala says she wasn't sure what the president's decision would ultimately be.

The press conference was one or the other. I warned everybody before the press conference that it was possible the President would say no.

It turned out that Shilala was right to temper expectations. Less than an hour before the press conference, HHS was contacted by the White House to say that the President would be keeping the ban in place. The department scrambled to adjust its plans, delaying its announcement by three hours. That day, Bob Vogel was with his brother at a Red Sox game in Fenway Park when he received a page to join a conference call. He took it in the parking lot.

We got on the call and the news was broken that the final decision had been made that there would not be a formal certification. And I would say I was shocked. I mean, it just seemed like, and I hate to use this word so but like a flip flop. We were heading down this road and suddenly they chickened out. I guess is how I would describe it. It was very disappointing.

At the press conference, Secretary Shalala did what she had come to do and certified the research findings required to overturn the ban, but as she explained to reporters, the ban itself was staying put.

In Washington to day, the Clint administration has decided to maintain the ban on using federal funds to pay for needle exchange programs. Those are the ones designed to prevent the spread of AIDS.

It was painful. It was painful because the evidence was so clear. It was heartbreaking for me to face the scientist and say. The President said, no, I didn't like it. I didn't like transmitting it, but he made the decision.

The Secretary of Health and Human Services, Dona Chalela, said there is evidence that the programs do reduce the transmission of HIV without significantly increasing drug use, but she said that state and local governments have to pay for the programs.

I suppose it was a compromise, you know. I was shocked. I wished they had bigger balls than that, but that was better than silence.

Journalists reported that scientists seated next to Shalala looked visibly uncomfortable. I wish I could play you some audio from the event itself, but it was limited to print reporters only. Here's Chilela explaining the compromise A few days later.

Federal money doesn't pay for everything that's important in this country, and in this case, the administration made the decision not to make this ineligible activity under prevention funds. The most important message today is that the science is now there so that local communities ought to look at their strategies and they can then consider using a needle exchange program as part of that overall strategy. It was the worst moment in my HHS leadership in terms of a policy decision.

To use it.

There are a few different theories about why Clinton came out against needo exchange at the last minute. One blames his drugs are Barry McCaffrey, who cornered the President on Air Force one just before the press conference and made the case that changing the rule would condone drug use.

Bill Clinton did it under political pressure because Democrats thought they were going to have trouble getting re elected. There were Democrats that bought the argument that it would enable drug use.

Clinton's waffling led to a significant increase in national media coverage of needle exchange miss America. In nineteen ninety eight, Kate Shindle spoke publicly about her personal evolution on the issue.

I was very much against these pro when I first became Miss America.

It's a really had issue as far as.

Government is concerned right now, because there is that catchphrase needle exchange, and unfortunately there are a lot of people that don't read past the headlines.

And I was sort of guilty of that. But then I was enlightened.

I guess.

Four years later Quinton said he had been wrong not to lift the ban, and about fourteen years after that, in twenty sixteen, Congress quietly got rid of it. The new policy made it possible for federal funds to be used for anything a needle exchange program needed, except the syringes themselves. As we finish our work on this podcast, there's still no vaccine for HIV, and there's still no

So we're still working on those same things.

Forty years later.

I'm still here and got the treatments, waiting for that cure, waiting for that vaccine, but still hopeful and still curious.

We've come a long way.

We've made a lot of progress on this disease, so we can eradicate the spars. So back to me is what I would really that would be my dream. That's what I've like happened.

We've lost so many people, We've lost so many lives. We have to remember this. We have to remember the struggle, because it's only in remembering the struggle that you understand that you can fight, that you must fight.

What patients are asked on and asked me because I start having a lot of gray hair, white hair, whatever. They're getting nervous that I may have a retirement in my future, and so what I try to do to assuage their concerns and fear is that You've got me from the very first case in New York. You've got me until hopefully the very last case, after a cure has developed and I get to administer it to all of my patients, and then I'll be happy to step down.

And that's the way I leave it.

It's a I guess it's a fantasy.

For all the people who survived those years. There are so many who didn't. I want to leave you with a c from the funeral of Bobby Campbell. He was the first person with AIDS you heard in the series, the nurse from San Francisco who turned himself into a poster boy for the disease. When Campbell died in nineteen eighty four, he was remembered with a memorial service attended by a thousand friends, family members, and neighbors. One of the people who spoke was Campbell's partner, Bobby Hilliard.

When Bobby was an intensive care I left my backpack out in the waiting room and I was in the room with him. After he died, I went back to the waiting room and sitting on top of the backpack was a little bell that I had never seen before, and someone left there and I've been carrying it around in my pocket since then, and I'd like to say one more thing before ringing it. Love after Death for Bobby.

Fiasco is presented by Audible Originals and Prologue Projects. The show is produced by Andrew Parsons, Sam Graham Felsen, Madeline kaplan Ulla Culpa and me Leon Nafock. Our researcher is Francis Carr. Editorial support from Jessica Miller and Norah waswas archival research by Michelle Sullivan. This season's music is composed by Edith Mudge. Additional music by Nick Silvester of God Mode, Joel Saint, Julian and Dan English, Noah Hect and Joe Valley.