The Daily - A Path to Curing H.I.V.
Episode Date: March 21, 2019For only the second time since the start of a global epidemic, a person was reported this month to have been cured of H.I.V., the virus that causes AIDS. Scientists and activists had almost given up o...n reaching that milestone. Here’s a look at how we got to this point. Guest: Peter Staley, a longtime AIDS activist. For more information on today’s episode, visit nytimes.com/thedaily.
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From The New York Times, I'm Michael Barbaro. This is The Daily.
Earlier this month, a second person was cured of HIV, something that after three decades of
fighting for a cure, scientists and activists had almost given up on. How we got here.
most given up on. How we got here. It's Thursday, March 21st.
So Peter Staley, when did you first hear about HIV and AIDS? Where were you? And what was going on in your life? I think I first heard about AIDS probably a year into the crisis
in 1982. It's mysterious, it's deadly, and it's baffling medical science.
Like the first mainstream television report. The lifestyle of some male homosexuals has
triggered an epidemic. Acquired immune deficiency syndrome, or the acronym by which it's frequently identified, AIDS.
And I'm still in college at Oberlin.
Researchers are now studying blood and other samples from the victims,
trying to learn what is causing the disease.
So far, they have had no luck.
You know, it seemed like this strange mystery.
I'm not sure how applicable it felt to my life.
Investigators have examined the habits of homosexuals for clues.
I was in the fast lane at one time in terms of the way that I lived my life, and now I'm not.
I was a closeted homosexual.
Certainly wasn't hearing about it on campus at all.
And then I came to New York in about April of 83 for this new job on Wall Street
and had my first conversations with other gay men. And at least in my generation, the very young
20-somethings, often closeted, it still seemed remote. We were telling each other that it was mostly happening in older gay men
and those who had been highly, highly prolific in their sexuality.
So fast forward a couple of years.
To begin with, AIDS was just an obscure medical curiosity.
I'm now a bond trader on Wall Street.
A strange illness affecting a handful of homosexuals and drug abusers in American cities.
Today, the virus has claimed thousands of lives and threatened millions more.
When the AIDS alarm sounded four years ago, most people knew little or nothing about the disease,
much less knew anyone who had it.
Now, as the number of cases doubles every six months, that profile is changing.
And AIDS has finally become a massive story in the country.
Some might be led to believe that the disease is leveling off.
It is not.
And not in a good way.
Many researchers would argue that the number of cases is actually ten times higher
than those reported by the Centers for Disease Control.
You know, they should just come out and tell people.
The country was in a panic.
You know, got everybody scared.
There were cover stories on all the national magazines about AIDS.
Parents were pulling their kids out of schools if there were rumors about a child having HIV.
These people are raising money and signing petitions in a fight to keep Ryan White out of their school.
He has a spill on a table, a chair. Your daughter comes in, catches it, wants to say she is not going to get it.
And I sat down with my kind of newish boyfriend at the time.
Breakfast is served.
Thanks. We almost had a shaving cream.
Yeah, okay.
To watch the very first television movie about the subject,
which was called An Early Frost.
So, how'd it go with your folks?
And Aidan Quinn was the star.
He didn't tell me.
He played a closeted gay man.
Look, I don't have the same relationship with my parents that you have with yours, okay?
I don't talk about sex with them.
They don't talk about sex with me. Who is talking about
sex? Talking about us.
Who
gets hit by AIDS with
PCP pneumonia, which was the common
killer back then.
And
I'm sitting there watching this thing
and I've got a bad cough.
Why don't you go home?
I was hoping you'd say that.
How about you?
I want to check these sites first.
And Aiden Quinn is coughing away, acting like he has PCP pneumonia.
And during one of the commercial breaks, I'm hacking away,
and this boyfriend leans over and says,
you sound just like him.
Ugh.
Fortunately, I had a gay doctor in New York City, a guy named Dan William.
At that point, Dan was so paranoid about the health of all his patients that if you went in there with anything, he would run a CBC, a complete blood count, just a regular blood test.
just a regular blood test.
48 hours after that appointment,
I got a call from his nurse while I was at my trading desk.
I remember it very clearly. It was a Friday morning.
And he said, there's an abnormality on your test,
and Dan would like you to come in for some more blood work.
I pressed him, and he said,
it might be indication of AIDS.
Right then and there, I just knew that that's what it was.
I felt like I'd been handed a death sentence.
That's kind of the classic story.
I sat down on my bed and started crying because I realized how screwed I was.
So at that point, it became a game of
where can I find treatments to buy me a year, some months, a few years, buy me some time.
And what was the answer? Where could you and did you go for treatments at this phase?
There was nothing. There were no treatments approved at that point.
But the first thing I did after my diagnosis was go home and tell my family.
And they rallied to my side.
It was just wonderful.
So I had this initial support group, but I still felt very alone.
I hadn't met another person with HIV.
So I finally got myself to an HIV support group at GMHC.
Gay men's health crisis.
Right.
And I actually didn't like what I was hearing.
Why not?
They were living in the stigma. They were all saying they had stopped having sex. They felt
like they were walking around with a scarlet letter. They were filled with fear about dying
any day. They were in full trauma mode rather than fight mode. But there was this one guy across from me who spoke up and he was a character.
He was in leather and he had kind of spiked hair and very goth.
And he said, well, I don't know what you're all talking about.
I'm not going to stop living.
And my eyes widened and it's like, yeah, this is the guy I've got to get to know.
His name was Griffin Gold.
And it was just such great luck because he was one of the leaders of the self-empowerment movement of people with AIDS in the country.
What's going to happen to stop this epidemic? When is this government going to start to care
about the people who are dying? And he started tying me into this early activism.
Act up! Fight AIDS! And then all of us got lucky six months after that when Act Up was born.
Elvis got lucky six months after that when ACT UP was born.
There's a new AIDS death every half hour.
There's a new HIV infection every single minute.
ACT UP was really in response to a call by Larry Kramer.
I think the groundswell of new chapters of new members is very similar to what happened during the Vietnam War,
where people got so angry at the government
that they were forced into this frustration.
Saying that people weren't aware enough
and weren't fighting back.
And he wanted a political response.
We are in the middle of a plague!
And I had this crazy first year with ACT UP
where I was still working on Wall Street,
so I had to keep my activism kind of in the closet, as it were.
And then after about a year of that, the game was kind of up. My CD4 count crashed below 200.
In my head, I knew from the science that that usually would start kind of this clock,
that people who had less than 200 CD4 cells were dying of AIDS in about two years.
So I felt a clock had started and I only had two years left. I couldn't keep trying to trade bonds
on Wall Street. So the very next morning after that CD4 count, I walked into my boss's office
and told him everything and said, I'm walking out of here now and this is my last day.
And so what do you do next?
I go full in on ACT UP.
Gay people and straight people, black people and white people, men and women will hear the story that once there was a terrible disease and that a brave group of people stood up and fought
and in some cases died so that others might live and be free.
It became my church, it became my family,
it became my social life, and it started keeping me alive.
And after we kick the shit out of this disease,
I intend to be alive to kick the shit out of the system so that this will never happen again.
Thank you.
Two weeks after I left Wall Street, I got arrested on Wall Street for ACT UP's one-year anniversary.
on Wall Street for ACT UP's one-year anniversary.
What was the next big public action that you took with ACT UP?
The FDA, the Food and Drug Administration.
October 11th, 1988.
It lasted all day. There were over a thousand demonstrators from ACT UP chapters in Rockville, Maryland, surrounding the Food and Drug Administration.
We're here today. We're old. We're young. We're gay. We're straight. We're here today because we want to make a difference. We're here today because we care.
And it was surrounded by hundreds of police officers.
I see some of your men are wearing plastic gloves.
Did the department provide them?
Yes.
Why?
That's up to the individual officer,
so whether he wants to wear them or does not want to wear them,
whatever made him feel comfortable.
And, you know, I wanted to do something that would get my fellow activists riled up.
I had noticed this overhang over the front door,
and I was trying to figure out how I could get past 30 cops to get up onto that.
And so me and two friends just walked towards them
like we wanted to negotiate or talk with them.
And we came within about six feet of the front line,
which was just below the outer edge of the overhang.
And just when we got there, my friends clasped their hands together,
and I put my right foot in, and I was launched,
just as the cops sprang forward trying to catch me.
And I started hanging this huge banner
that said, Silence equals death! Silence equals death!
...that said silence equals death
over the front entrance of the FDA.
And all the activists converged at the front door
and started cheering and hooting and hollering.
It was very symbolic of how we were seizing the building that day.
It's very symbolic of how we were seizing the building that day.
For many Americans, it was the first time they had seen large numbers of gay men and lesbians taken to the homosexual is weak and timid and when threatened will cower in a corner.
And what was your message to the FDA in that moment when you are scaling the building and unfurling this sign that says silence equals death?
sign that says silence equals death? We wanted them to create an entirely different regulatory scheme for how they analyzed drugs for life-threatening illnesses like AIDS versus
other drugs. We wanted them to work proactively with pharmaceutical companies to speed the development of drugs, to make sure that their clinical trials would enroll quickly and get data quickly.
We wanted them to approve drugs as soon as possible.
And we wanted them to open up a mechanism whereby people who weren't in the clinical trials could still access some experimental therapies before
they were approved. And to our amazement, within about a year of that action, we got almost all
of that out of the FDA. We may not have convinced Americans to love us or to tolerate us, but
Americans do not like to hear
that their own government is letting
thousands of their own citizens die.
When the living can no longer speak,
the dead may speak for them.
So by 91 or 92, we're an incredibly busy movement
with almost weekly demonstrations.
But every week we start our Monday night meetings with an announcement of who had died that week.
I'd like to read something that Mark wrote and wants us to do today.
Bury me furiously.
And all of us are going to memorials every month.
Several months before his death, Mark said, I want my funeral
to be fierce and defiant.
So we were winning all these battles,
but we were losing the war.
The death count just kept rising and rising.
Let the whole earth
hear us now.
We beg, we pray,
we demand
that this epidemic end.
We'll be right back.
We just gave up on the idea that we were going to find a cure.
The virus was just too complex. But we were hoping to shake out enough drugs that we could find a magic combination that would add up to real time, added to people's lives.
That was our new hope in the early 90s.
And we kept fighting for that and fighting for that.
And finally,
finally, we got lucky. We came to the conclusion that it's inevitable for HIV to develop drug
resistance if you give it one drug at a time. However, if you start to combine the drugs
and try to force the virus into a corner using multiple drugs,
it is exceedingly difficult for HIV to become...
In 1996, scientists announced that if you use three drugs at the same time, that was the magic number,
you could stop the replication of HIV in a patient.
could stop the replication of HIV in a patient.
By spring of 1996, we had three different trials using a protease inhibitor plus two other drugs.
And Dr. David Ho, who was very involved with this discovery and presented the data. We knew that unlike previous experience, the virus was coming under good control and staying there.
previous experience, the virus was coming under good control and staying there.
He started speculating that if patients stayed on these regimens, that maybe the immune system would knock out the rest of the virus on its own over time.
And so we were pretty excited.
These current regimens might lead to what they called eradication, i.e. cure.
And we're talking to ourselves and we're saying, what if this is real?
And we just couldn't believe it after all this time.
We all started on these triple drug regimens.
And within three months, we were all undetectable.
Then it was like, wow, this is it.
This is huge.
That's amazing.
Yeah. The death rate in the U.S. over the next two years dropped by 75%. Just a huge
shift in the pandemic.
But did it mean that HIV was really being eradicated from your system?
No.
No, but it took us a couple years to figure that out.
And they started learning more and more
about how even wilier this virus is
and how it is able to protect itself
and hide in your body and all sorts of cellular
compartments.
It hides in cells that line your GI tract.
It hides in your brain.
It hides in macrophage cells.
The basic science that started following from this was endlessly depressing.
And within, I would say, five years, the talk of cure
had just vanished. So by the time we get to 2007, there is no cure research going on. Everybody's
kind of resigned to the fact that the virus is too wily and has too many hiding places in the body
to get it out. And then all of a sudden, this news breaks. He is the only person ever to be cured of HIV and AIDS. His cure was somewhat
of an accident. That somebody has been cured of AIDS. And it's like, what? The only man believed
ever to have been cured of HIV spoke today at the International AIDS Conference in Washington. His
name is Timothy Brown. He's also known as the Berlin patient. They had this fellow called the Berlin
patient. Doctors in Germany used an experimental radiation treatment to wipe out Brown's immune
system. They gave him two bone marrow transplants and the results were remarkable. Who also was
suffering from very advanced cancer. Doctors in Germany wiped out
his immune system with chemotherapy and radiation and then gave him two rounds of stem cell
transplants. His bone marrow donor had a rare gene mutation that made the donor and now Brown's
stem cells resistant to HIV. This new immune system grew out of this bone marrow, and it worked.
If there was any HIV hiding anywhere in his body, it had nothing to latch on to in order to replicate.
And so it died.
And so it died.
So the idea is that this person who is immune to HIV, that if you take their bone marrow and introduce it into the system of an HIV-positive person, the Berlin patient, and the Berlin patient's immune system starts to develop around that bone marrow that's immune to HIV, that the entire patient becomes immune to HIV. That just cracked open everybody's imaginations.
And cure research was back on the agenda.
A whole field of research was born trying to figure out how we could do this without wiping out a person's immune system first, without a bone marrow transplant.
Right, because it would be almost impossible to replicate this on a big scale. Exactly.
And there were other attempts to replicate what happened
with Timothy Brown and the Berlin patient.
But unfortunately, they failed.
They tried this in other people with HIV
that had cancer that needed bone marrow transplants.
There was a period of time
where it looked like they had undetectable HIV
after the transplant,
but then it bounced back.
And so there were some disappointments.
And so what happened two weeks ago...
Researchers say the latest success confirms that a cure for HIV infection is possible.
...was proof that what happened in the Berlin patient was not a fluke.
It comes 12 years after American Timothy Brown, known as the Berlin patient,
became the first known adult to be cured. Both patients underwent stem cell transplants from
donors who carried a rare genetic mutation that made them resistant to HIV. Doctors say this second successful... You know, we're not rushing to the hospital to get bone marrow transplants, but I was thrilled to
hear this news, mostly because I think it's going to probably get us quicker to that day when we
ultimately find a gene therapy that does the same thing. Peter, your entire adult life has been focused on advancing treatment for HIV and AIDS.
And it's remarkable how much advancement has occurred and that you've witnessed.
If you live long enough to experience a cure, and of course, we all hope you do, what will
you do then?
Well, I mean, since 2008, I really do love the idea that I'm probably going to be there
when it happens, that I'm going to witness that. I just want to be there.
If they ever do find a cure, imagine what it would be like.
It's going to be like that last scene in Longtime Companion, that great AIDS film, where...
The dream sequence at the end of the movie where all the people who have died of AIDS come back and celebrate on a sunny day
on the beach on Fire Island,
and everybody's partying.
It's like a big gay disco.
It's everybody we've lost,
and they're just celebrating.
Willie!
Hey, Will!
It's me!
It might be like that, you know.
You know, I'm going to be an ex-AIDS activist.
And I'm going to do something else and be glad for it and be proud.
I hope that you will be an ex-AIDS activist, Peter,
and I look forward to chatting with you when that day comes.
Yeah, me too. Thank you very much. We appreciate it. You're welcome.
Peter Staley is now directing his activism toward greater awareness and access to a drug, Truvada, that is 99% effective in preventing HIV infections,
but remains unaffordable to large numbers of people in the U.S. and the world
where HIV infections are on the rise.
Here's what else you need to know today.
In New Zealand on Wednesday,
the first funerals began for victims of last week's attack on two mosques.
In Christchurch, the bodies of a father and son killed in the attacks,
16-year-old Hamza Mustafa and 44-year-old Khaled Mustafa,
were wrapped in white cloths and carried to their graves in open caskets on the shoulders of mourners.
Inshallah, brothers, everybody will get charged off to get the family first.
Let the bullets carry everybody first.
Let them lower the person inside the grave, inshallah, and we will all participate. Among those mourners was 13-year-old Zaid Mustafa,
who came to bury his brother and father,
and who was himself shot in the leg during the attack.
And then having the son stand over his father and brother,
he himself wounded, and to farewell and say to his father,
I don't want to be here alone.
That was devastating.
And a federal judge has ruled
that the Trump administration violated federal law
by failing to account for climate change
when it opened hundreds of thousands of acres
of federal lands to oil and gas drilling.
The judge faulted the Department of the Interior
for not assessing how the drilling projects, which are in Wyoming,
contribute to the country's overall carbon output,
which he said was required by law.
The ruling, which temporarily blocks the drilling in Wyoming,
could offer environmentalists a legal playbook
for challenging Trump's entire oil and gas agenda.
That's it for The Daily.
I'm Michael Barbaro.
See you tomorrow.
Special thanks to David France,
the director of How to Survive a Plague.