It's not the amount of federal money allocated to it
so much as how research priorities are defined.
- We need new drugs to keep people alive,
but the NlH is only testing old drugs,
drugs that we already have.
- Can you tell us what you're doing?
- Hi, I'm Jim Jenson,
and I'm in a clinical trial here.
And right now,
I'm observing and participating in
the ACT UP demonstration.
- Why? Why do you support this action?
- Because we need far more AlDS research.
And we're just beginning.
- What trial are you in?
- I'm in interleukin-2 AZT combination study.
- Are there any women in your trial?
- No, there aren't any women at all.
- People of color?
- Uh, no, there are not.
- Why do you think that is?
- [laughs]
Just the beginning of the problem.
crowd: Murder, murder!
- There are three major things
that control NlH research:
stupidity, incompetence, and greed.
Those are the three major driving forces
behind what's going on here
and why there are no treatments out there
for people living with this disease.
[crowd shouting]
In that building down that way,
Dr. Anthony Fauci is deciding the research priorities
for the National lnstitutes
of Allergy and lnfectious Diseases.
We're down here 'cause we think
we should be deciding the research priorities,
because these are the people who know what's going on
'cause they're dealing with it every day.
[crowd shouting and cheering]
[whistle blowing]
[people shouting indistinctly]
crowd: The whole world is watching!
The whole world is watching!
[crowd shouting indistinctly]
[drums beating, indistinct shouting]
[smashing]
- If anything, the mood after the NlH
was even bleaker than the mood before,
because we had no indication
that they were gonna change or respond to our demands,
and we had in fact had a meeting with them in Bethesda
after the NlH action
that indicated that there was total resistance
to putting people from the community
on the research committees,
to letting the ACT UP observers attend the meetings,
and to open up the meetings
so that they weren't secret anymore.
Why should science be shrouded in secrecy?
It's supposed to be based on a free exchange of ideas.
And so it was very important to stage in San FranciscoÜÜÜÜ
before, again, the global community of scientists
and people working on AlDSÜÜÜÜ
why we had been at the NlH,
why the U.S. system wasn't working out,
and to reach the people directly
that we had reached symbolically through the NlH action.
[indistinct chatter]
- About 1 00 protesters have already been arrested
at the lnternational AlDS Conference
that began today in San Francisco.
Hundreds more are angrily protesting
a government policy
they say neglects research and ostracizes victims.
- Why don't you do an informational slide first?
"United States has the most discriminatory
immigration policies regarding HlV."
- I could say, you know, as a way to bridge the, uhÜÜÜÜ
the rift between the scientific communityÜÜÜÜall of youÜÜÜÜ
and the activists, we'd like you to join in some activism.
And I've always been painfully aware
that in order for me to beat this virus and live,
I will need a great deal of help from all of you.
Can we all,
before it's too late,
begin to understand each other?
Will we realize that we share similar motivations?
During the upcoming days,
ACT UP New York will be handing out
our AlDS Treatment Agenda,
which includes a list of 99 drugs
that we believe could be ready
for small Phase I studies this year or next.
However, from your side,
we're being constantly told to butt out.
On my side, the level of anger and frustration
is reaching such a point
that attitudes claiming that all of you are uncaring
and in it for greed are now widespread.
While at times we may offend you,
remember as well that like you,
ACT UP has succeeded in prolonging the lives
of thousands of people living with HlV disease.
[cheers and applause]
I would like to be joined in front of the stage
by my fellow AlDS activists.
Would you all come up?
[applause]
At this moment, there are others just like us
who are trying to get into this conference
but are being barred by the billy clubs
of San Francisco police.
And there are still others like us
who are trying to get through customs
at the San Francisco airport
but are being detained instead because they are gay.
There's a man that could have prevented these absurdities.
This man has said that
he would like to see a kinder, gentler nation.
If you believe that the immigration policy
barring people living with HlV disease
from entering this country is useless as a health policy
and discriminatory as well,
please stand now and remain standing.
[cheering and applause]
Join us in vocalizing our collective anger.
Join us in a chant against the man
who could bring down the lNS barriers.
Join us in a chant against the man
who has decided to show
his commitment to fighting AlDS
by refusing to be here today.
Instead, he is, at this very moment,
in North Carolina, attending a fund-raiser
for the homophobic author of the lNS barriers,
that pig in the senate known as Jesse Helms.
[crowd boos and jeers]
Join us in this chant:
300,000 dead from AlDS.
Where is George?
crowd: 300,000 dead from AlDS.
Where is George?
300,000 dead from AlDS.
Where is George?
300,000 dead from AlDS.
Where is George?
- You can all now consider yourselves
members of ACT UP.
[cheers and applause]
- One of the things that happened in San Francisco
was that we found out we had won some of our NlH demands.
Fauci came up to me and said, "We had a meeting.
"We decided that we're gonna put you guys
"on all the committees,
"and we're gonna let your observers go to the meetings,
and the meetings won't be secret anymore."
- Never again
could any of this be done
without taking people with AlDS and their advocates
into consideration.
This would be public business from now on.
- You know, we should all be going through the bushes
Iike this, like, sticking our heads up.
It was beginning to feel a little different
because we'd spent all the time up until then
being on the outside,
sort of beating on the doors and trying to get in,
and now they actually wanted to hear what we had to say.
[peaceful music]
? ?
- We brought them in at Merck.
We madeÜÜÜÜÜwe made a very specific effort
to bring those individuals in
so that they would see what it is that we were doingÜÜÜÜ
or trying to doÜÜÜÜ from the very beginning.
- This was really fantastic stuff
because we were sitting down with them, andÜÜÜÜ
sometimes from the very earliest stages
of the development of a drugÜÜÜÜ
and helping them plot out their strategy
toward designing clinical trials.
- The chemists who had worked on the project,
a bunchÜÜÜÜÜ a couple chemists said,
"Let's look at all the aspartic protease inhibitors
that we have on the shelf."
And they tested 'em,
and they found a few molecules that actually worked.
The challenge was, is now you had these molecules
that were really good inhibitors in your assay,
which is just in a test tube.
When you put it into animals,
they just would never work,
or they would never get absorbed by your system.
- And I remember being very disappointed
'cause I had to share this information
with sort of my own personal view, which was,
this is gonna be a lot more difficult than,
you know, we thought it was gonna be originally
and in fact may not be possible.
And Bill Bahlman said, "Take a break,
pick yourself up, and go back at it."
If he and his colleagues and his friends around the table
can take that attitude and do that,
I remember saying to myself,
"Emilio, you've got no right to say to yourself,
'l don't know if I can do this,' all right?"
And so off we went.
And we kept going at it.
- We're spending $4 billion a year on AlDS research.
When you consider that on a per capita basis forÜÜÜÜ
compared to heart disease or cancer,
it's an awful lot.
- Almost nothing stops George Bush
from a round of golf.
He's played nearly every day-
and sometimes twice a day-
during his August vacation.
[upbeat jazzy music]
- ? I'll be glad ?
? When you're dead, you rascal, you ?
- ? Rascal, you ?
- ? I'll be laughin' ?
? When you're in your grave, you dog ?
- ? Dirty dog ?
- ? When you're dead and in your grave ?
? No more ravioli will you crave ?
- If the message is research,
I would say please talk to Dr. Fauci
and others at the National lnstitute of Health,
who will tell you that
we're doing pretty well in funding of research.
- ? Dirty dog ?
- ? I invite you to my house for a meal ?
? All my meatballs you tried to steal ?
? Mm ?
? You're a devil, yeah ?
- Act up! Fight back!
Fight AlDS!
? ?
- We've got to factor in
the sensitivity of those of us
who feel that there's a spiritual and moral aspect
to this playing to the homosexual,
Iesbian crowd.
It makes it different from anything else.
- Oh, shÜÜÜÜ
- I wish they'd shut their mouths and go to work
and keep their private matters to themselves
and get their mentality out of their crotches.
- I'm here today because Jesse Helms is the devil.
Jesse Helms has worked for years
to do as much as he possibly can
to ensure the continuance of the AlDS epidemic.
- The disease is spreading because of him,
and people are dying because of him.
- This is an educational effort.
It's not a violation of people's property rights.
We've been very careful that absolutely no damage is done,
and if any damage is done,
whatever it is, we'll be happy to pay for it.
We have the money with us to pay for it.
- You guys don't want to tangle with these people
'cause you don't want to get AlDS.
I know, but what's next?
Come on, get out.
- If they would keep their mouths shut
and go about their business
with whatever their sexual orientation is,
nobody would ever say a word,
and we wouldn't know anything about it.
But, no, they march in the streets,
and they defy you to say anything about it.
Well, they don't like me, and I don't like them.
- Back off the property.
- Bunch of 'em climbed up on my house in Arlington
and hoisted about a 35-foot canvas, uh, condom,
one day, in protest of me.
[upbeat jazzy music, cheering]
- Fight AlDS! Fight AlDS!
Fight!
- ? I'll be glad ?
? When you're dead, you rascal, you ?
[music fades and ends]
- Sir, when we started this colloquy,
I thought I was on your side,
particularly on the First Amendment.
And under the First Amendment,
people don't have to shut their mouths.
They have a right to speak.
- Well, uh...they can speak,
uh, just so long as, uh,
they don't offend anybody else,
uh, I suppose.
[monks vocalizing]
- Make sure your second coming
is a safe one.
Use condoms.
Are you shooting?
- Yeah.
I just turned it on.
Okay, rolling.
Tell him we're rolling.
- The machine is rolling.
You can start talking now, honey.
- Oh, I didn't know she meant now.
What I was gonna say was, I just loveÜÜÜÜ
I love so much to go up to the tenth floor
because no one ever had explained to me
that there was going to be light again in the world
and that the whole world wasn't going to be dark.
Some great challenges face us as young people.
We're in our 20s, andÜÜÜÜ
and this is the challenge
that's been placed in front of me.
And, who knows, little camera.
Lots of other blind, deaf men
have lived happy lives.
There areÜÜÜÜÜ there are many years to come.
Let's hope.
So...
What the hell?
Life is worth living.
[chuckles] lsn't it?
- The death rate just kept on climbing.
We realized that science
really was up against a brick wall.
We kept getting new drugs approved
to prevent opportunistic infections,
and then somebody would just get another infection.
- So, Peter, where are we going?
- We're gonna be going to the headquarters
of Daiichi pharmaceutical companies of Japan.
This is their U.S. headquarters,
and we're blockading their offices
because they have a drug
that's important both to AlDS activists
and to cancer activists,
specifically breast cancer,
that they've been dragging their feet on
for over two years now,
and we don't understand why,
but we certainly are gonna try to let them understand
why we're concerned.
And, everybody...
- Wait for you at the end of the hall.
- Just wait outside the elevators.
- Shh.
- Hey.
Hi, we're with ACT UP.
We're doing an act of civil disobedience.
Please remain calm.
Jim, it's Peter. We're in.
Send all the press.
- Hello, we're from ACT UP New York.
- You already have the blood
of several thousand people on your hands,
and those of us like me
who have Kaposi's sarcoma are gonna die,
and we are here until we get arrested.
- You seem to know nothing about the actual details
of the development of this drug.
Maybe you're just not telling us.
- Mr. Borsic, have you scheduled a meeting with the FDA?
- Yeah, as soon as we can.
- We have helped many companies through this process.
We can take a drug from your test tube to the market
in under two years if you work with us,
and we will pave the way for you
with the Food and Drug Administration.
But this total reluctance on your part
is gonna get you nowhere.
- Have been used in people for 30 years.
- lt'll end up killing us, all right?
- See this dark mark on my forehead?
That's Kaposi's sarcoma.
It's gonna spread!
It's gonna kill me.
You coming to my funeral?
Because you're the man fucking responsible.
You are my murderer in your shirt and tie.
- Do you think that you'll live to see a cure?
- No.
I don't.
- Do you think that you'll live?
- No. No.
- You expect to die from this?
[somber music]
? ?
- The anger just mounted and mounted and mounted
the more people who were dying.
Once a week, we met.
And at that meeting,
a lot of people came who were just terrified
they weren't gonna be alive even the next week.
What can we do? How can we get there?
- I think ACT UP's anger turned in
after having been directed out so long.
In its first few years,
Treatment and Data pretty much got everything it wanted
from the floor of ACT UP,
but as Treatment and Data was becoming
more and more technical,
there were a lot of people in the general membership of ACT UP
that saw that as an elite,
and that maybe it would be better
if that elite was pulled in a bit.
- There was a fear, I think,
that we were getting too close to the people in power,
that we would compromise our own principles.
And the people who were more interested in the social issues
became uncomfortable with that.
- I remember this very divisive moment
where, um, you know,
there was a proposal for moratorium
on meeting with drug companies, and someoneÜÜÜÜÜ
for six monthsÜÜÜÜÜ
and there was a huge and impassioned debate over it,
and someone saidÜÜÜÜÜ
a woman who was not HlV-positive said,
"Well, it's not like it's for the rest of your life."
And for a lot of people in the room,
it was the rest of their life.
crowd: Act up! Fight back!
Fight AlDS!
- There were inevitable splits in priorities.
- You know it quite well. - I know.
- And it was completely left out
of the NlH research agenda.
- I agree. IÜÜÜÜÜlÜÜÜÜÜ
- I remember a lot of dirty tricks that happened
and a lot of fear within the organization
that the various factions had done this to each other.
- Mark Harrington,
Mark Harrington,
there's a video camera here now.
Would you like to take an oath
that you will not write nasty anonymous letters to people?
- I've been getting some hate letters too,
but those are unsigned.
I don't everÜÜÜÜÜ I don't everÜÜÜÜÜ
- So you'll keep on writing nasty letters to people?
- There were a lot of charges
in the midst of that, of sabotage and threats.
- Our last speaker isÜÜÜÜ is Larry Kramer.
- Why didn't you answer the charges?
- Bill, you're gonna have a chance to talk.
All right, everybody'sÜÜÜÜ
- Don't lecture me,
you stupid, lazy, incompetent shithead!
- Bill, everybody got the flyerÜÜÜÜ
[both speaking at once]
- You can't just lick his ass before he talks!
- Shut the fuck up and let him answer!
- Look, there are a lot of people in the audience
who want to ask and talk about treatment,
and I think it's important that we allow that to happen.
- Oh, we're gonna dictate free speech now?
- You're the one who's interfering
with speech right now.
- Go back to GMHC
or whatever AlDS pimp operation is paying you.
You're making the same point George Bush madeÜÜÜÜ
- Plague!
We are in the middle of a fucking plague!
And you behave like this!
Plague!
40 million infected people is a fucking plague!
We are in the worst shape
we have ever, ever, ever been in!
All those pills we're shoveling down our throats,
forget it!
ACT UP has been taken over by a lunatic fringe.
They can't get together.
Nobody agrees with anything.
All we can do
is field a couple hundred people in a demonstration!
That's not gonna make anybody pay attention!
Not until we get millions out there!
And we can't do that!
All we do is pick at each other
and yell at each other!
And I say to you in year ten
the same thing I said to you in 1 981
when there were 41 cases.
Until we get our acts together,
all of us,
we are as good as dead.
- In the end, the Treatment and Data guysÜÜÜÜ
Peter, Garance, Mark, and some othersÜÜÜÜÜ
split off and formed their own separate organization.
- TAG was one of the little mercury balls
that flew off the main body of ACT UP.
A more sort of "think tank" type project came about.
- Mr. Harrington, a TAG member,
educated at Harvard College,
and he has worked for a long time
on experimental treatments for the disease
and also the basic science.
And Mr. Gonsalves was born in Long lsland
and attended Tufts University, also a TAG member.
I guess I can do nothing better
than to turn this conference over to my speakers.
[chuckles]
- I noticed that you're both
sitting up there in suits and ties.
Do you feel that your approach
is better than circling NlH buildings
and so forth?
- I think that we like to keep our options open,
but it's silly to risk arrest
and the hassles that are attendant upon it
if you can get serious attention and negotiations going
with other measures.
- We've just released a report,
a critique of all the NlH's AlDS programs.
- The research is spread out over 1 2 agencies.
There's no coordination.
There's a lot of duplication.
There's no leadership.
- The budget is shrinking and shrinking as cases mount,
and the president needs to be blamed,
as well as the Congress,
who cut the entire NlH budget
by $1 50 million two weeks ago.
- Our recommendations, I think,
are gonna require some legislation.
So we have to go to our friends on the hill
and see what wonders they can work for us.
[somber music]
? ?
- We had this one particular compound
that looked like it may have had the potency
and the physical properties that we wanted,
and it could be a possible drug.
- We said, you know, "Let's put this
in HlV-infected individuals, and let's see what happens."
So we went into HlV-infected individuals
with this drug called Crixivan,
and you could see a very substantial drop
just with the one protease inhibitor;
you could see a very substantial drop in virus load.
So that was the first week.
The second week was very disappointing,
because what we saw in the second week was, in fact,
the virus load coming right back up again.
One exception.
- There was one patient thatÜÜÜÜ
patient 1 43, I believe, was his nameÜÜÜÜÜhis numberÜÜÜÜÜ
that the virus went down and stayed down.
- That told us that it was possible.
If it can happen in one,
then by definition it can happen in everyone.
You just need to figure out how to do it.
That puts you in a completely different place
and in a completely different state of mind.
So then the question became,
"Okay, now what do we need to do
in order to make it possible?"
[cheers and applause, whistles blowing]
- This is the beginning of the primary season
to elect the next president.
We want to send a message to all of the candidates:
we have not seen them actively address the AlDS plague,
and we thought it would be best to send a message
by voting with our feet in the streets.
I want to call for a massive march on Washington.
The weekend the AlDS quilt is gonna be there,
we have got to surround the White House
with people concerned about AlDS
to push Bush out of the White House!
[cheers and applause]
- Last night, a man with AlDS heckled Clinton,
charging that he had a bad record
on fighting AlDS in Arkansas.
- When voter Bob Rafsky met Bill Clinton,
it was anything but pleasant.
- We're dying in this state!
What are you going to do about AlDS?
- First of all, it will become
a part of my obsession as president.
- That's why I'm running for president,
to do something about it.
- Now, will you just calm down?
[laughter and applause]
I feel your pain!
I feel your pain.
But if you want to attack me personally,
you're no better than Jerry Brown
and all the rest of these people
who say whatever sounds good in the moment.
If you want something to be done,
you ask me a question, and you listen.
If you don't agree with me,
go support somebody else for president,
but quit talking to me like that.
This is not a matter of personal attack;
it's a matter of human loss.
[applause and cheering]
- I came here tonight because I'm dying from AlDS.
And it doesn't matter to me who the next president is
if they don't change 11 years of government neglect
of this epidemic.
- Is this on? This isn't on.
Um, okay, first off,
what happened this week was,
AlDS became an issue in this campaign.
[applause and cheering]
I'd like to call down Bob Rafsky.
[cheers and applause]
- Act up!
crowd: Fight back!
Fight AlDS!
Act up! Fight back!
Fight AlDS!
[cheers and applause]
- Uh, never debate a Rhodes scholar.
It gets you into a world of trouble.
[laughter]
It looks like what we have to do
is to keep forcing these clowns to say the right thing
so that if one of them happens to become president,
we can hold them accountable for doing the right thing.
- Yeah.
- But I justÜÜÜÜ it's always important to say
that we all know that
the names of the people who might save our lives
are not Bill Clinton and Jerry Brown, et cetera.
The names of the people who might save our lives
are lris Long, Mark Harrington,
Peter Staley, et cetera.
And they're the ones who will be remembered
as the heroes of this epidemic,
as well as those who have gone before.
[cheers and applause]
- ? And he smells like one too ?
- Well, I haven't showered,
so I'm not surprised that you would say that.
No, I've just been writing, and...
I was up at 5:00 a.m. yesterday.
- This is Bob's birthday,
July 22, 1 992.
- Ready for the pyrotechnics?
- Yes!
- Nathaniel, help.
- No!
- Yay!
- Lydia E. Rios.
Steve H.
My friends, David Evans,
Nicolas Kaiser, George Marshall,
and my beloved brother Dennis J.
- Robert R. Hakins.
Phillip Gregory Ellison.
Terry Ronan.
- Michael Bennett.
Ron Field.
Tina Chow.
Perry Ellis.
Freddie Mercury.
Peter Allen.
To the thousands of other people
who were made to suffer in silence.
- Join ACT UP for a political funeral!
Meet at the steps of the Capitol at 1 :00 p.m.
Give a wake-up call
to George Bush and Bill Clinton and Perot.
[kids laughing]
- I think the quilt itself does good stuff
and is moving.
Still, it's like making something beautiful
out of the epidemic.
And I felt like doing something like this
is a way of showing
there's nothing beautiful about it.
You know, this is what I'm left with.
I've got a box full of ashes and bone chips.
You know, there's no beauty in that.
And I felt like a statement like this is like saying,
"This is what George Bush has done," you know?
This is what him
and Ronald Reagan before him have done.
These are our loved ones,
and this is what they've been reduced to,
and we're bringing them
to the person who's responsible for their death.
[ethereal music]
? ?
crowd: Fight back! Fight AlDS!
Act up! Fight back! Fight AlDS!
[chanting indistinctly]
Bringing the dead to your door!
We won't take it anymore!
Bringing the dead to your door!
We won't take it anymore!
Bringing the dead to your door!
We won't take it anymore!
Bringing the dead to your door!
[helicopter whirring]
[ethereal music continues]
? ?
[whistle blowing, applause]
crowd: Act up! Fight back! Fight AlDS!
Act up!
[ethereal music swells]
? ?
Act up! Fight back!
Fight AlDS! Act up!
Fight back! Fight AlDS!
Act up! Fight back!
Fight AlDS! Act up! Fight back!
Fight AlDS!
[shouting indistinctly]
Shame! Shame! Shame! Shame!
[ethereal music swells]
- I love you, Mike!
I love you, Mike!
? ?
[music fades]
- Welcome to the first of three debates
among the major candidates
for president of the United States,
sponsored by the Commission on Presidential Debates.
- Mr. President, yesterday tens of thousands of people
paraded past the White House
to demonstrate their concern about the disease AlDS.
A celebrated member of your commission,
Magic Johnson,
quipped, saying that there was too much inaction.
Where is this widespread feeling coming from
that your administration is not doing enough about AlDS?
- I can't tell you where it's coming from,
but I am very much concerned about AlDS,
and I believe that we've got
the best researchers in the world
out there at NlH working the problem.
It's one of the few diseases
where behavior matters.
And I once called on somebody,
"Well, change your behavior."
If the behavior you're using,
uh, prone to cause AlDS,
change the behavior.
Next thing I know,
one of these ACT UP groups is out,
saying, "Bush ought to change his behavior."
You can't talk about it rationally.
- Let everyone here know
that this is not a political funeral
for Mark Fisher,
who wouldn't let us burn
or bury his courage
or his love for us
any more than he would let the earth take his body
until it was already in flight.
He asked for this ceremony
not so we could bury him
but so we could celebrate his undying anger.
This isn't a political funeral for Mark;
it's a political funeral
for the man who killed him and so many others
and is slowly killing me,
whose name curls my tongue
and curdles my breath.
George Bush, we believe you'll be defeated tomorrow
because we believe
there's still some justice left in the universe
and some compassion left in the American people.
But whether or not you are,
here and now, standing by Mark's body,
we put this curse on you.
Mark's spirit will haunt you
until the end of your days,
so that in the moment of your defeat,
you'll remember our defeats.
And in the moment of your death,
you'll remember our deaths.
As for Mark, when the living can no longer speak,
the dead may speak for them.
Mark's voice is here with us,
as is the voice of Pericles,
who, two millennia ago, warned the Athenian soldiers
who didn't have to die
and in whose death he was complicit
but who had the nobility to say
that their memorial was the whole Earth.
Let the whole Earth hear us now.
We beg, we pray, we demand
that this epidemic end!
Not just so we may live
but so that Mark's soul
may rest in peace at last.
In anger and in grief,
this fight is not over till all of us are safe.
Act up.
Fight back.
Fight AlDS.
[delicate music]
? ?
[delicate music]
? ?
- The debate over AlDS therapy
has reignited with a new European study
that challenges the effectiveness of AZT,
the widely prescribed drug used to treat the HlV virus.
- This study disproves what every other study proves,
is that the drug is at best modest, mostly useless,
not good for you in the beginning.
- Two other drugs, ddl and ddC,
were approved because they were as good as AZT,
which means that they might not be very useful either.
All this is profoundly dispiriting
for advocates of people with AlDS.
- We thought we had made some advance in AlDS treatment
over the last five years,
and these studies show that we really haven't.
- Many activists now admit
their demands were shortsighted.
- It's been a huge expenditure,
a waste of money for the U.S. taxpayer,
and it was a naiveté on our part
to think that the magic bullet was out there.
It just had to be tested in humans and, uh...
given to us as the cure.
- Many doctors and scientists
say the bleak results presented here
indicate the U.S. government
needs to substantially reorganize
the way it conducts AlDS research.
Robert Bazell, NBC News, Berlin.
- There's been this big crisis at St. Vincent's
about the way that we talk about the, uhÜÜÜÜ
what happened in Berlin.
Couple of doctors said they were
afraid of people committing suicide now.
- I don't feel like, "Oh, now I just"ÜÜÜÜ
I don't feel, "Oh, now I want to give up.
Now I want to stop living because AZT doesn't work."
- I've felt forever now
that I'm not gonna outlive this epidemic,
that I willÜÜÜÜÜ that I will die from this.
- You know, maybe that is our future,
that we're gonna watch each other die.
It'sÜÜÜÜthat's not a new thought.
We've been thinking that ever since we started the group.
- The way that the recent spate of deaths isÜÜÜÜ
I don't know.
It all seems so much more apocalyptic.
Like, the story doesn't seem
to have this relationship to effective treatment
or a cure anymore.
It now seems to have this relationship to death.
It endsÜÜÜÜÜ it ends with everybody dying.
Will the last person alive in Chelsea
please turn out the lights?
[static crackling]
- Joining me now is Dr. David Kessler,
the commissioner of the Food and Drug Administration.
Dr. Kessler, how excited
should we get about this new family of drugs,
these protease inhibitors?
- I don't want to overpromise,
but these are the most potent drugs
we've seen against the virus.
- I know that you are pushing
for faster FDA approval of these drugs.
I know that the application has just gone
for the first of these drugs to the FDA.
It's still gonna take six months.
- We will turn around that application as quick as ever.
We're approving drugs in a matter of months these days.
- But you were telling me that's six months, right?
That's as quick as possible.
- We may be able to do it even a little quicker.
- A split has developed
between those who want rapid approval
based on early indicators of success
and the Treatment Action Group, or TAG.
TAG has asked the FDA to reconsider
the accelerated approval process.
- We told the FDA, "No."
"The company has asked you to approve that drug too soon.
They need a little bit more data first."
- TAG is asking the FDA to take a closer look
at saquinavir, the first protease inhibitor
to seek approval.
- We need to make sure
we don't repeat the mistake we made
with AZT and ddl.
This is a new class of drugs.
We need to know if it works.
The battle over early approval of saquinavir
was a really pivotal moment for treatment activism.
And we took such shit for it, from within.
- There are a lot of people who do agree
that there are problems, serious problems,
the way drug testing and drug trials are run.
But there are many of us who feel that halting
accelerated approval is not necessarily the answer.
- TAG made their proposal
for this large simple trial of 1 8,000 people
that they want to put in a placebo control trial
where 1/3 would get placebo.
They pushed this idea on the FDA at a secret meeting,
which was not announced to the community.
This is something we have fought hard and long for.
We've been arrested to get accelerated approval through.
- It's the behavior that I have a problem with.
It's the work they're doing
that I have a problem with, and it'sÜÜÜÜÜ
this is what I am gonna fight.
I'm not interested in mud wrestling with the boys.
I am absolutely enraged that there are people
who have appointed themselves elitist representatives
and represent themselves
as the single voice of this epidemic.
I am gonna fight them,
my patients are gonna fight them,
and you goddamn well better fight them!
[cheers and applause]
- Apparently there was a big discussion
on accelerated approval and protease drug development
Iast week on the floor,
so we just wanted to give you sort of the TAG perspective
and give you a sense of our proposal
around protease drug development
so we can start from a baseline
of common understanding and knowledge.
- This proposal is not about taking expanded access away,
taking accelerated approval away.
This is about adding something.
This is about figuring out how do we get information
about how to actually use these drugs.
- You need more people when you have a less powerful drug.
If we were dealing with a penicillin,
we could do it in 20 people.
So we put together a large simple trial
that tried to synthesize expanded access
in large simple trials.
And what we did is, we presented it to Merck.
We presented it to the FDA.
We wanted to start a community discussion.
- I just wanted to thank Gregg and Derek
for coming to tell us about this.
[applause]
Because we hadn't heard anything
until we read about it in Barron's.
- If you wanted to hear the proposal,
you could have heard it 40 times.
It's been talked about all over.
- Dr. Cotler wants to speak.
- TAG is talking about getting accurate information.
ACT UP is talking about making drugs available.
There should be a way to mesh those two.
It's really not one or the other.
Your two groups are really talking past one another.
Try not to scream.
Try not to go at each other's throats, but just talk,
because the differences really can be bridged.
[all talking at once]
- No, no, no.
- Hey! - Shh.
[all talking at once]
- Quiet!
- '93 to '95 were the worst years.
It was a really terrifying time.
They were the worst years.
And then we got lucky.
[pensive music]
? ?
[man singing indistinctly]
[music continues]
? ?
- Um...
You know, just losing...
And, uh...
just so many...
so many good people.
And... uh...
You know, like any war,
you wonder why you came home.
[man singing indistinctly]
[music continues]
? ?
[keyboard clacking]
- Mark collected all of our writings,
pieces that all of us had done about what had gone wrong
in the ways that we studied previous drugs
and what we were already doing wrong
in terms of trying to figure out
whether the protease inhibitors worked,
and we published it as this big report
and started passing them out everywhere we went.
Let's do this study.
- They elevated themselves
by their own self-education about these things,
and then it became very, very clear
that you weren't gonna mess with these people,
because they knew exactly what you were talking about,
and they knew exactly what they were talking about.
- Activists created a system
that was able to do everything
faster, better, cheaper,
more ethically, and more effectively.
- They forced people to put together
the right clinical trials,
where you had the patient in mind,
and you weren't cutting corners.
And, of course, the big breakthrough
was combination therapy,
'cause monotherapy was clearly not the way to go.
- So let's go back into patients,
and let's go back into patients
with Crixivan plus AZT plus 3TC.
- The activists proposed a study design;
industry used it.
It got the drug approved in six months.
- So I was at a meeting in Washington,
and I stood up there,
and I showed for the first time the data in the study.
- The data goes up on the screen,
and everyone gasps, and cameras start to click.
And justÜÜÜÜit's a realization that this isÜÜÜÜÜ
this is a really great drug, and itÜÜÜÜÜit could work.
- I remember sitting there in a hotel room
in Washington, D.C.,
our hotel banquet room,
and just crying.
It was like, "We did it. We did something."
- It was too much to take in at that point.
It wasn't until we started
putting the drugs in our bodies
and we all went home and...
startedÜÜÜÜÜ went straight on that regimen
that had been on that slide,
including Crixivan and two nucleoside analogues.
And sure enough,
it happened in us within 30 days,
all of us.
Undetectable, undetectable, undetectable.
- The dying was stopping with triple-drug combination.
And if you needed your clinical trial,
you could just go to these hospitals
that were not filling up
the way they were filling up with people with HlV.
- You would see their Kaposi's sarcoma lesions
that had been bright and red and big
melting back into their skin.
- They were calling it the Lazarus effect.
People who were deathly ill would get put on this drug,
and all of a sudden, they're working again.
That was a phenomenal feeling.
- It worked.
You know, we did something remarkable.
- So that breakthrough, you know,
that we thought was gonna happen in '88 or '89
if we just worked fast enough,
you know, it did happen.
But not until '96, and so...
You know, a lot of people died.
Maybe if Reagan had started putting money into AlDS
a little earlier...
[sniffles]
[sighs]
They wouldn't all be dead.
[sniffles]
- I feel very fortunate.
And there's probably a lot of complicated reasons why,
but I still find it very difficult
to plan for the future
and/or accept that
I will have a long life,
which is unfortunate, because I've had a long life,
and I've been living with AlDS for 20 years.
But it's hard for me to relax into life.
- I know lots of us went through
really difficult times after,
um, trying to figure out,
"Well, what do I do now?"
You know?
Not just because I didn't think I had a future and now I do,
so I have to make some plans, but...
How do I do something else that is as...
[sighs]
I mean, it's a weird word,
but as fulfilling as that work has been.
- To be that threatened
with extinction, um...
And to not lay down, um...
But instead to stand up
and to fight back.
The way we did it,
the way we took care of ourselves and each other,
the goodness that we showed,
the humanity that we showed the world
is just mind-boggling,
just incredible.
crowd: Fight AlDS!
Act up! Fight back!
Fight AlDS!
- Every single drug that's out there
is because of ACT UP, I am convinced.
We had the brainpower, and we had the street power.
We had the good cops and the bad cops.
The government didn't get us the drugs.
No one else got us the drugs.
We, ACT UP, got those drugs out there.
It is the proudest achievement
that the gay population of this world
can ever claim.
- We could do it because we could deliver
hundreds and sometimes thousands of bodies.
We had people with AlDS putting their bodies on the line,
flopping out in the streets,
saying, "Fine, this is my body.
Take me away."
- I drew the line there.
[chuckles]
I didn't want to get arrested.
[laughs]
That far, I wouldn't go.
[upbeat rock music]
? ?
- ? Keeping up ?
? Keeping up with the feeling, oh, yeah ?
? Getting to know what you like ?
? And what you love ?
- I'd like to close with words written
by fellow AlDS activist Vito Russo:
"When future generations ask what we did in the war,
"we have to be able to tell them
"that we were out here fighting,
"and we have to leave a legacy
"to the generations of people who will come after us.
"Remember that someday the AlDS crisis will be over.
"And when that day has come and gone,
"there will be a people alive on this Earth,
"gay people and straight people,
"black people and white people,
"men and women,
"who will hear the story
"that once there was a terrible disease,
"and that a brave group of people stood up and foughtÜÜÜÜ
"and in some cases diedÜÜÜÜÜ
so that others might live and be free."
? ?
- ? And there's ?
? And there's ?
? And there's no end in sight ?
? And there's ?
? And there's no end in sight ?
? ?
- We might have a federal charge if they get picky.
- Great. Leavenworth, here we come.
? ?
- An invoice?
[indistinct chatter]
[laughter]
- ? Keeping up ?
? Keeping up ?
- Green, green.
- Ouch, that hurts.
- ? Keeping it up ?
? Keeping it up ?
- lnformation is essential so that doctors and patients
can make intelligent treatment decisions.
? ?
- Okay, all right.
Do I have to hold the red button?
- No, you can let go, okay.
- I'm really glad to see everybody here.
You look really good.
[scattered laughter]
- ? Try to keep up in time ?
- I'd like to suggest it would not be unethical
to do a randomized trial of two different prevention programs.
? ?
- If we don't eradicate HlV everywhere,
we will never eradicate it anywhere.
- ? Keeping up ?
? Keeping up ?
- We may march without incident,
or they may arrest us.
But it'll be fun.
? ?
- About the plane in Sky Magazine.
[woman laughs]
? ?
- [singing indistinctly]
- ? And there's ?
? And there's ?
? And there's no end in sight ?
? And there's ?
? And there's no end in sight ?
? Keeping up ?
- In just over two years,
that drug went from test tube to full approval.
- ? Heartbeat won't go slow ?
? And when it's knowing ?
? That you will be there tonight ?
? Keeping up ?
? Keeping ?
? Keepin' it up ?
? Trying to keep going ?
? There's no end in sight ?
? Keeping up ?
[music ends]
[whimsical music]
? ?
- ? In the dark of night ?
? I lay myself ?
? To rest ?
? Step out of the strange light ?
- ? I go to bed ?
? For the blanket's quilted ?
? And I am dead ?
? I turn to the stars ?
- ? Stars over my bed ?
? ?
- ? Come to life ?
? Again ?
? ?
- ? Again ?
both: ? Come to life ?
? Again ?
- ? Baby's basketball ?
? And I will bounce along ?
? Look over my shoulder ?
both: ? See if I am wrong ?
? ?
? In the dark of night ?
? I lay myself ?
? To rest ?
? Step out of the strange light ?
- ? I go to bed ?
? For the blanket's quilted ?
? And I am dead ?
? And I turn to the stars ?
- ? Stars over my bed ?
? ?
both: ? Come to life ?
? Again ?
? ?
- ? Again ?
both: ? Come to life ?
? Again ?
[whimsical music]
? ?