Original subtitles

[forlorn music]

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[forlorn music intensifies]

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[crowd chattering indistinctly]

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[whistle blows]

- Welcome to ACT UP!

We are the AlDS Coalition to Unleash Power,

a diverse, nonpartisan group of individuals

united in anger

and committed to direct action to...

crowd: End the AlDS crisis!

- Less than 1 2 hours from now,

we are going to be taking over city hall!

[applause] all: Act up!

Fight back! Fight AlDS!

- Yes?

- Mr. Mayor, in campaigning

for the lesbian and gay vote in an election year,

a bit of historical context is necessary

in dealing with the AlDS crisis in New York City.

It wasn't until 1 983 that you met with people

to deal with the AlDS crisis.

How do you respond to these criticisms?

- That is a falsehood.

- Please, anybody who's thinking about being arrested,

fill out a support sheet.

Make sure that your support person

knows who you are and what group you're in.

Yeah?

- If we end up in the Tombs,

is there, like, a queer tank there,

and would you recommend that we ask to be there?

- There is a homo-tank, and I've been there.

And it's better than the straight tank,

Iet me tell you.

- Who else? Yes?

- In the past, you've described ACT UP as fascist.

Yet in the press release,

you called them "concerned citizens,"

and I was wondering what changed your mind.

- I don't think that you can't use both.

Fascists can be concerned citizens.

And I don't believe they are fascists.

I think they have used a fascist tactic.

- Let us celebrate together tonight

the end of the last day

on which Ed Koch can tell himself

that the communities

which are being decimated by this epidemic

are so weak and so divided among themselves,

that he can keep serving us this kind of bullshit.

Tomorrow morning, he will begin to learn the truth!

[cheers and applause]

all: Act up, stand tall,

tomorrow morning at city hall!

Act up, stand tall,

tomorrow morning at city hall!

Act up, stand tall,

tomorrow morning at city hall!

Act up, stand tall...

[foreboding music]

? ?

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- We're talking to Jim Eigo

from the Treatment lssues Committee in ACT UP.

Jim, what specific treatment issues

are being brought into this demonstration this week?

- The municipal hospitals are totally falling apart.

More than half the people

who get diagnosed with AlDS today

get diagnosed in the emergency rooms of our city.

You're going to find yourself

waiting four days in an emergency room

before you get a bed.

- Pretty scared,

but being HlV-positive,

I don't have much choice in the matter.

- I just love all these people,

and I think that what we're doing is really right.

And, I mean, listen to this, and look at all the people.

It's just really wonderful,

and it's worth putting yourself on the line for.

- There is no accurate diagnosis.

There are incentives in the city hospitals

not to diagnose people with AlDS.

And therefore, people don't get treated.

We are angry at the way this city

has handled this crisis,

and we demand that Ed Koch exert leadership

and declare a state of emergency.

[cheering]

- Go in the street now or wait;

those are the options.

One, he says go.

- Two now.

- Says "now." Three.

Tom? "Go now," Tom says.

- We're standing here with Larry Kramer.

What is ACT UP trying to say today to Ed Koch?

- We're sending a message to public officials,

to closeted public officials,

that we won't be shat on anymore

and obviously all the AlDS issues.

- I would love to see, like, more cameras or something,

you know, for our own protection.

- Did everyone hear his concern?

- People die every day.

Friends get sick every day.

I don't����� It's like being in the trenches.

There's such anger in the community,

and it is coalescing in a way

that has never been done before.

- Okay, which way do we face, girlfriends,

this way or that way?

[cheers and applause]

[car horns blaring]

all: Health care is a right.

Health care is a right!

Health care is a right.

Health care is a right!

Health care is a right.

Health care is a right!

Pump up the budget!

Health care is a right.

Health care is a right!

- You are currently in violation of the law

by obstructing vehicular and pedestrian traffic.

You have the option of leaving at this time, otherwise...

[crowd shouting indistinctly]

- Act up!

- Never be silent again!

all: Fight AlDS! Act up!

Fight back! Fight AlDS!

Act up! Fight back!

[indistinct shouting]

[whistle blows]

- Fight back! Fight AlDS!

[crowd clamoring]

- Act up!

[siren wailing]

all: Fight back! Fight AlDS!

Stand up! Fight back!

- This man is a personal friend!

Be careful!

- They're arresting journalists now!

- Act up!

Act up! Act up!

[all shouting indistinctly]

- Act up! Fight AlDS!

Pray for the dead!

[all clamoring]

- Fight back! Fight AlDS!

[dramatic percussive music]

? ?

- I guess I'm feeling pretty hopeless at the moment.

I think, like, the biggest question that I'm facing now

is how to

remain hopeful in the face of increasing loss.

- I don't know.

Maybe it sounds really corny, but l...

As difficult as the time is for us,

I����l like being alive.

And I love my friends,

and I love my family.

I love the people around me.

- I'm going to die from this.

This isn't going to be cured

for years and years and years.

- Doctor's office.

- Hi, it's Peter Staley.

It's like living in a war.

All around me, friends are dropping dead,

and you're scared for your own life

all at the same time.

[crowd murmuring indistinctly]

I was diagnosed with AlDS-related complex

while I was working as a bond trader on Wall Street.

I had night sweats.

I began to get dry, patchy, scaly, itchy skin on my face.

And I would get sick constantly.

Colds would lay me up for weeks.

I started to look around in desperation

for ways that I could find treatments

to help save my life.

Um...

And there was nothing coming out of our government's efforts,

I quickly realized.

Everything I read

said I had about two years to live,

at most.

- What do we want?

crowd: A cure!

- When do we want it?

crowd: Now!

- What do we want?

crowd: A cure!

- When do we want it?

crowd: Now!

- What do we want?

crowd: A cure!

- When do we want it?

crowd: Now!

- I was on my way to work,

and I got handed a flyer about ACT UP and AlDS.

My mentor says, "lf you ask me,

"l think they all deserve to die

because they took it up the butt."

I was deeply closeted,

and I had to just stew about it for the rest of the day.

I got myself to the very next ACT UP meeting.

They could just tap into that immediate anger

and get stuff done.

We will not leave until an administrator meets with us

and tells us that St. Vincent's

is willing to make a public statement

condemning gay and lesbian violence.

[cheers and applause]

All those in favor?

All those opposed?

- They're coming!

You see them right there.

You've heard about ACT UP.

You've seen our flyers.

The kiss-in happens tonight.

Act up! Fight back!

Make love! Act up!

Whoo, whoo!

- I'll deal with the cameras�����

- Are you the security guard that was beating people up?

- Out with the cameras.

[crowd chattering indistinctly]

- Members of the mainstream media were thrown out,

as we were earlier on,

but Steve Zabel and l came back in,

and we're bringing you this exclusive footage.

- Don't destroy property! You're destroying property.

- Well, actually you damaged some human property last week.

- You damaged people.

- You will not beat up on faggots,

and you will not beat up on lesbians

in hospitals in our own communities.

- Two gay women were beaten up,

and when her lover came to respond����

you know the story.

And another story was when two gay guys came here,

and one was sick with AlDS.

The security guard told him to, "Get the fuck out of here"

and called him "faggot."

I think if you're gonna work,

especially in Greenwich Village,

you should have some sensitivity training,

'cause we're not gonna have it.

- I'm willing to meet with three people

if the rest of you leave.

[crowd chattering indistinctly]

- Okay, one at a time. One at a time.

- It's unclear how to play it.

My own instinct would be to say,

"We'll be glad to meet with you.

And when the meeting's over, we'll leave."

Not to leave before the meeting takes place.

- Gregg?

- We've shown the kind of power we can have

by immediate action, by sticking together,

by reaching a consensus together.

We should take this in steps, and we should be coolheaded.

- I'm gonna take a straw poll, okay?

And we agreed to leave the waiting room

while he met with three of our representatives����

Gregg, Jerry, and Neil����

in that public space right there.

And then we would stick around out here

and wait to see what the outcome was.

- So I said, "Enough of this.

This job is gonna kill me."

So I went on disability

and decided to become a full-time AlDS activist.

- In the beginning,

what drugs did we have?

We had nothing.

And the pneumonia could come on like that

and be gone,

and a person is dead.

The skin lesions,

the Kaposi's sarcoma was...

People would be coming in with a purple spot.

Everybody was coming in with,

"What is this spot?

What is that spot?"

You'd have some guys come in with KS on their face,

and they'd be putting makeup on their face.

And they'd be���� it was�����

And they were lucky

if it just stayed in the skin,

if it didn't go into their lungs.

And then if it went into their lungs,

chemo didn't work, and then they were gone.

You were grasping at straws for everything,

because these are young, vibrant people.

And all of a sudden, they're being snatched.

I think everything has to be put in perspective.

- Larry? - Hello.

- [chuckles]

- lris Long is lifesaving.

If you can't hear in the back and you want to,

just shout it out, please.

- This is a report

from the American Society of Microbiology,

a conference I went to at the end of May.

- Quiet!

- There were many infections talked about�����

including AlDS���� at this conference,

and it was overwhelming to know how many pathogens,

bacteria, fungus,

protozoas, and viruses that are out there

that can really, uh...

make you very sick.

- One day, this woman just showed up,

this housewife, who had been a scientist and still was,

and said, "You guys don't know diddly about what this is.

"And anybody who wants to learn about the system,

"how it works,

"how grants are made, how the science works,

"how everything works,

"how the NlH works,

"how the FDA works,

"how you can deal with

"all this enormous amount of material,

I'll teach you."

- There should be much more funding than there is

for infectious diseases.

- lris was not gay,

but she could not see,

with what was going on around her and what she knew,

not reaching out to the affected communities of AlDS.

- I waited and went up to lris afterwards

and said, "I'm interested in what you were saying.

"I'd like to know more. I'd like to help."

- And a few people joined her,

and that became a bigger and bigger group,

and that became the Treatment and Data Committee: T&D.

- They're still getting a hell of a lot more money

than actually getting those treatments to anybody.

It was kind of a dorky activity

for a bunch of East Village hipsters and artists

to sit around reading medical journal articles.

We called it science club,

Iike it was chess club or something.

- There aren't drugs.

- lndividual after individual

had to come to grips with the fact that,

"l will survive the longest,

the most I know about what I'm putting into my body."

So they all had to be become scientists,

to some degree.

- And what I would like everyone to do

would be to keep on thinking of ways to refine these things

to make them more clear to people

that don't necessarily know the issues, like Ol.

No one knows what Ol is.

Okay, so I wrote it here, just 'cause it's shorthand.

Only 1 7% of people in their trials

have been taking drugs

for opportunistic infections or cancers.

- Mark wasn't, like, the big, beefcakey guy.

He was super smart, smoked nonstop.

- Right away, Mark digested,

as by osmosis, everything.

And within a few weeks,

he had come up with a glossary of AlDS treatment terms,

and we started giving it out in our meetings.

- Next we have an announcement by Tom Dwayne

regarding housing.

- This is Bernard Braverman,

who's in danger of being evicted

from his apartment that he shared with his life partner

for many, many years.

His life partner died,

and the landlord wants Bernard out of his home

because his name was not on the lease.

- What's his landlord's address?

[laughter] - We'll find him.

- There are cards here to fill out,

to write to the governor.

Let's make sure that our voices are heard in New York City

to save the homes of PWAs

and other nontraditional families.

Thank you very much.

[cheers and applause]

- I just want to say something about what's just happened.

I realized we haven't done anything yet for him

and we haven't been effective

and we haven't been powerful,

but we will be.

It's very inspiring to know the power in this room

is potentially available to each and every one of us.

[cheers and applause]

- One, two, three.

[girl laughs]

Good?

How was it?

Is that as good as Daddy's or better?

- You're better.

- Yay!

- Would you like Daddy to try it?

Are you ready?

- [laughs and shrieks]

That's not very good.

[laughter]

- One, two, three.

- I know this sounds ironic,

considering that it ended in divorce,

but I think it is fair to say

it's the only really successful love affair of my life.

I came out at age 40.

It was very bad timing to come out

in the middle of an epidemic.

The question is, what does a decent society do

with people who hurt themselves because they're human,

who smoke too much, who eat too much,

who drive carelessly,

who don't have safe sex?

I think the answer is that a decent society

does not put people out to pasture

and let them die because they've done a human thing.

- For the first time today,

the government approved prescription sales

of a drug to treat AlDS.

The drug, AZT, is not a cure for the disease,

but it has prolonged the lives of some AlDS victims.

It's the only government-approved AlDS drug

in America.

But even this most promising of drugs

is a source of frustration and anger.

At $1 0,000 a year cost per patient,

it's prohibitively expensive for most

and not widely available.

all: Out of the bars and into the streets!

Out of the bars and into the streets!

- AZT was the most expensive drug in history.

They charge $1 0,000 a year.

We need to get a substantial price reduction

out of this company.

- The incident began at 10:0 this morning

when four AlDS activists

took over an office at Burroughs Wellcome,

saying they had enough food and water

to stay holed up for a long time.

The activists are demanding that Burroughs Wellcome

Iower its price of AZT.

- Burroughs Wellcome is profiting off of our lives.

That's why we did today what we did.

And if they don't see to start listening to my community,

to our community, the AlDS community,

then we're gonna be back.

[solemn music]

? ?

- One of the worst, worst things was,

when people died in the hospital,

they used to put them in black trash bags.

It was����� [scoffs]

It was really awful.

And not every funeral parlor

would take patients who had died of AlDS.

- But�����so the least we could offer

is sympathy and moral support,

you know, and kindness and so forth.

And that, they deserved, in any case.

And when even that became denied,

you know, by the totalitarian rules of organizations,

of institutions,

it was really horrifying.

- It is the most frightening medical mystery of our times.

AlDS victims must deal with the trauma

of being both a patient and a pariah.

- I hate to use the word "gay"

in connection with sodomy.

There's nothing gay about these people

engaging in incredibly offensive and revolting conduct

that has led to the proliferation of AlDS.

- There is a feeling among members

of any of a number of professions

or just the general population

that patients with AlDS,

many of whom are homosexual,

are a little bit different.

I think that that has led to a little bit of a complacency

about the approach towards this disease.

- In the absence of adequate health care,

we have learned to become our own clinicians,

researchers, lobbyists,

drug smugglers, pharmacists.

We have our own libraries,

newspapers, drugstores, and laboratories.

- Some of the medications that were made available

were not effective.

They were in this category

that we called "what the hell" drugs,

which is, "There's some evidence it could be useful.

It's unlikely to be harmful. What the hell?"

- Should I type?

[laughs] - Yes, type.

Take your time.

Where are we?

- We're at the People With AlDS Health Group,

the largest underground buyers' club

in the United States.

- And what do you do here?

- We help people import drugs from other countries,

um, that are unapproved here:

Peptide T, Albendazole,

Oral Amphotericin B.

We have a whole variety of things

for your treatment pleasure.

[chuckles]

None of which work, by the way.

[laughter]

Put that in.

- People with AlDS,

what they were mostly thinking about was,

"Oh, drugs, how do I get it off-market?

"How do l�����

"Will we ever get a black market for this drug?

I hear this is good and"����

It was lris who helped us see;

we don't want a black market.

We want to make the real market work.

[static buzzing]

- Try it.

[match strikes]

Hi, I'm Mark Harrington from ACT UP New York.

Recently, a lot of activists have been asking

why ACT UP is going...

Uh. You've got to start over.

I got to do that���� I've got to do that over.

- You can just start yourself over.

- But l����but I won't get

that wonderful cigarette-lighting thing.

- I think the cigarette maybe is not going to work.

- I shouldn't use the cigarette at all, really?

- I don't think so. It's too, um����too much.

- Too much?

[inhaling]

Hi, I'm Mark Harrington from ACT UP New York.

A lot of people have been asking,

"Why are AlDS activists going to the FDA?"

First of all, you have to understand

that the FDA is one of the many federal AlDS bureaucracies

which we're angry with for not doing enough

in the fight against AlDS.

Half the people who take AZT

can't take it 'cause of side effects.

And therefore, the FDA has to take a more activist stance

in the experimental process.

And only the FDA has the power

under existing laws and regulations

to release the drugs that we want released now.

[static buzzing] How's that?

crowd: AZT is not enough!

Give us all the other stuff!

AZT is not enough!

Give us all the other stuff!

AZT is not enough!

Give us all the other stuff!

- It takes nine months to test a drug in Europe,

in Belgium, in France,

in Germany, in England.

We are not asking the FDA to release dangerous drugs

without safety or efficacy.

We are simply asking the FDA to do it quicker.

crowd: Drugs for sale!

Drugs for sale!

- Dextran sulfate for sale.

Get your dextran here.

You can't get it inside.

[indistinct chanting]

- FDA����� but we're selling it anyway.

- $30 for dextran sulfate!

crowd: Release the drugs now!

Release the drugs now!

Release the drugs now!

Get to work! Get to work!

Get to work! Get to work!

Guilty! Guilty! Guilty! Guilty!

Guilty! Guilty! Guilty!

Guilty! Guilty! Guilty!

Guilty! Guilty! Guilty! Guilty!

Seize control! Seize control!

Seize control! Seize control! Seize control!

- Keep it moving!

Keep it moving!

- Seize control! Seize control!

Seize control! Seize control!

- Fight AlDS! Act up!

Fight back!

- Fight AlDS!

Stand up! Fight back! Fight AlDS!

- What's going on? What's going on?

- Seize control!

Seize control! Seize control!

crowd: Seize control! Seize control!

Seize control! Seize control!

Seize control! Seize control!

- Seize control!

[cheers and applause]

[cameras clicking]

[indistinct shouting and chanting]

[whistle blows]

- Start fighting!

- Come on, tell us why you got arrested.

Where are they taking you? What's going on today?

- We don't know what's����� where they're taking us.

We're here because this government

has the resources to deal with the AlDS epidemic,

and they won't do it unless we force them.

- l.J. Hutchins reports live from Rockville,

where the massive protest is wrapping up.

I.J.?

- Well, Jim, it's being billed

as one of Montgomery County's biggest demonstrations

in recent history, and it went off smoothly.

1 85 arrests,

as a coalition of gay groups came to Rockville

to shut down the FDA.

- Tonight, from Washington, Crossfire: Against All Odds.

On the left, Tom Braden.

On the right, Pat Buchanan.

In the cross fire, Peter Staley

of the New York AlDS Coalition to Unleash Power.

- Peter Staley, you have the AlDS virus,

and I am sorry.

But don't you think that the Federal Drug Administration

has a responsibility not to let people,

such as you, have quacks

that could cause even more harm than you already have?

- The problem is,

is that the FDA is using the same process

to test a nasal spray

as it is to test AlDS drugs,

and it's a seven- to ten-year process.

- You have the FDA giving you a drug.

So far, you've got AZT. Why����

- Which I can't take

because it's too����� far too toxic.

And over half the people that have HlV can't take it.

- Okay, but the FDA says

there is nothing else that is worth anything.

- Mr. Staley, this is gonna astonish you,

but I agree with you 1 00%.

I think if someone's got AlDS

and someone wants to take a drug,

it's their life, and if it gives them hope,

they ought to be able to take it.

What I want to ask you

is whether you know of anything

that you think might be some kind of miraculous cure

that you think they're sitting on at FDA.

- There are over 1 40 drugs out there

that the FDA has identified as possibilities

and are in some stage of being looked at right now.

- Why are they holding back?

- Among that 1 40,

there's got to be one or a combination thereof

that can����� that can slow down this virus

or halt it in its tracks.

- You're just simply carrying the virus.

Is that correct?

- I have a few very minor symptoms,

and my immune system is virtually shot.

- What would you like to take?

- I would like to be able to take dextran sulfate legally.

- How would that hurt you?

- I'm taking it on the underground right now.

- Well, why not, Mr. Braden?

- Because����� well, I don't know anything

about dextran sulfate.

- Well, I'll tell you this.

It's an over-the-counter drug in Japan

and has been for 20 years.

- But����� - Over-the-counter, yes.

- But if the FDA says����

- I'm only asking that they be released

after there's a minimal amount of efficacy,

not a 1 00% test.

- You've got the pink triangle on your shirt,

"Silence equals death."

I gather that means you're a homosexual.

- Yes.

- Looking in the camera,

what would you tell some kid����

say you had a younger brother, 21 years old,

who also might have homosexual tendencies;

what would you tell him

if you wanted him to live a long life?

- Use a condom

and also to use a lubricant, by the way,

that has the medicine�����

- This is Russian roulette.

- It is not Russian roulette.

It is Russian roulette to not give people this information

when human nature dictates that they're gonna go out there,

and they're gonna have sex.

- You mean celibacy is impossible?

- It's just not gonna work.

People aren't gonna do it, and lots�����

Iots of people are gonna die.

Now, would you rather have

a lot of people cheating on their celibacy

with thousands of people dying,

or would you rather save those lives

and let them have sex?

- I think that, uh����

Well, thank you very much, Peter Staley.

Thanks for being in our studio.

Mr. Braden and l will be back in a minute.

- One of the things we wanted

was a drug that you gave to people

who had cytomegalovirus and advanced AlDS,

because people who had both tended to go blind.

It was called DHPG.

[somber music]

? ?

In a way similar to AZT,

it was highly toxic,

but it was known to be effective

because 6,000 people had already used the drug

but never in a clinical trial.

crowd: Hey, hey, FDA!

How many people did you kill today?

- We are with Jim Eigo from ACT UP,

and there's a major protest going on here in Bethesda

over the drug DHPG.

Tell us what's happening.

- Well, this is the second meeting

of the Bush commission for reviewing procedures

for approving AlDS and cancer drugs.

And we thought, since the non-approval of DHPG

is such a perfect example

of how regulation has gone wrong,

we'd bring it home to the commission itself

by showing up here in force,

and that's what we've done.

- Okay, also inside at the hearing itself.

And I understand there's going to be

an action in just a little while

when Ellen Cooper speaks.

- I guess so.

- What about DHPG?

- What about DHPG?

- What about DHPG?

[overlapping voices]

- Without the objective data,

we feel that we would indeed be on�����

on treacherous grounds

in defending that decision

and, in fact, would be wide open

to the charge of arbitrary decision-making.

Although, uh, we certainly

wouldn't be accused of being inflexible.

- You did it with AZT.

I don't see why you can't do it with...

- I mean, I have to say

that the difference in the data

between AZT And DHPG

is the difference between night and day, as far as����

- Sight and blindness.

- You're just as blind����

- Lose your life and lose your sight.

- People have died since this meeting started,

and four more are gonna die before it's over.

- Who represents the patient on this panel?

- Where is a person of color on this panel?

- FDA relooks at the DHPG data and suddenly, "Oh!"

Agrees with ACT UP.

- Ready for a vote?

All in favor, raise your hand.

One, two...

Well, that's everyone.

[cheers and applause]

- It was really an amazing encounter,

but it sort of felt like reaching the Wizard of Oz.

Like, you got to the center of the whole�����

of the whole system,

and there's just this schmuck behind a curtain.

There was no guiding agenda.

There was no leadership.

There was no global strategy

for how to deal with AlDS in the U.S.

And so on the bus back from Bethesda,

we decided to write a treatment agenda,

because nobody was dealing with the entire map of AlDS,

the entire constellation of opportunistic infections,

the gaps in research,

the underrepresented populations,

the fact that the diseases and the drugs

might be different in those populations.

How would we ever find out?

They weren't even being studied.

[carefree music]

- Jump on the bus!

- ? In the dark of night ?

? I laid myself ?

? To rest ?

? Step out of the strange... ?

- Bye, Ron!

Bye, Bobby!

- Come on, Catherine, let's go.

- It's time to go. - Yeah.

? ?

- ? Again ?

? Come to life ?

crowd: Crisis knows no borders!

The AlDS crisis knows no borders!

The AlDS crisis

knows no borders!

The AlDS crisis

knows no borders!

The AlDS crisis

knows no borders!

The AlDS crisis knows no borders!

- I'd just like to say

that the reasons I can't get any of these drugs

is 'cause, for nine years now,

the leadership in this country

has failed to come up with a plan of action.

They've failed to come up with a plan of research,

a national research agenda.

People with AlDS and their advocates

have finally done this for them.

This is it.

This is the plan we're presenting.

We need our government to read this plan.

We need them to work with us.

If they want to change it a little,

we'll talk to them.

But I want them to adopt it.

I want them to get started on it.

I want them to save our lives. Thank you.

[applause]

- I snuck around and grabbed����

uh, grabbed one of those copies.

And it was very interesting.

- We believe that the United States

has a global responsibility

to quickly develop effective treatments

not only for HlV infection itself

but for all of the opportunistic infections,

which actually cause suffering and death

in people living with AlDS.

- This is not a new agenda,

and it is not an agenda of only ACT UP.

Scientists agree with this.

Why can't we have it?

- The researchers and regulators

are going to have to come up with

a parallel release program

that will get drugs to the people who need it

before the five years down the pipe

where they may be approved by the FDA.

- I was scribbling madly in this copy of their����

their AlDS Treatment Research Agenda.

I would go back and forth between saying, "No, no!

They don't understand!"

To saying, "Whoa, you mean

"this isn't the way we're doing trials?

You mean people aren't allowed to do this or that?"

But I have to tell you that I was still not ready

to sort of go up to them

and try���� try and engage.

I brought this copy back,

and I distributed it to a small group of statisticians

that was meeting regularly

to talk about trial design issues.

The people sitting around that table

got as excited as I did.

This had clearly been written by people

who were very knowledgeable,

very, very intelligent,

and really wanted

to do the trials the best possible way.

They were not against trials.

They wanted to get the right answers,

but they wanted what they called humane trials.

- It all came together in Montreal,

but what was new for ACT UP...

We went to a drug company.

- There is renewed hope for people infected with AlDS.

A new experimental drug, ddl,

will be distributed on a limited basis

for free this fall by its developer,

the giant Bristol-Myers company.

This marks the first time

an anti-AlDS drug will be available

even before safety testing is finished.

Full AZT treatment is too much for patient Peter Staley.

For nine months, he's been limited

to a quarter-dose of the drug

and wants ddl as soon as possible.

- Do you need ddl to live, do you think?

- Yes, I need���� I need ddl.

I probably need some other antivirals beyond that.

- It is historic.

It is because the AlDS activist community

has obtained this drug.

It is not the government.

No one has given it to us.

We have fought for it,

and for the first time, we have won.

[indistinct chanting]

- So by '89, less than a year after our FDA demo,

they had approved a drug

to prevent blindness in people with AlDS.

And we had gotten expanded access to ddl,

and that was a very powerful feeling.

We felt like we were taking direct action,

and we were helping make people's lives better.

I wasn't sure that AZT or ddl were all that great,

but we were beginning to get letters from people

that said, "Thank you for saving my eyesight."

"Thank you, ACT UP, for getting me access to ddl

and helping to save my life."

- At Merck, HlV was an important scientific target.

HlV, of course, is a virus.

In order for the virus to infect an uninfected cell,

it needs to construct itself in a particular way.

First, the viral RNA needs to transform itself

into a DNA copy

in order to knit itself

into the nuclear DNA of the newly infected cell.

This occurs by a process called reverse transcription.

AZT and ddl were both originally developed

to try to inhibit that process of establishing infection.

A number of other researchers

began to focus on another portion

of the viral life cycle:

after the cell is already infected.

One of the steps that it takes is that�����

is, it makes a viral protein.

It has to snip that viral protein

in very specific places.

The resulting pieces self-assemble

to make the viral particle.

And what does the snipping

and what in fact controls the snipping

is a viral protein called the protease.

If you genetically modify the viral protease

so that it can no longer snip,

the virus no longer has the ability

to make those component pieces that it needs to make

in order to self-assemble

and make an infectious viral particle.

- We solved the structure of HlV protease in 1 989

and published it pretty quickly.

I think����� I think we saw the structure,

and within a few weeks, it was in the literature.

- And then the question became,

"All right, can we prove it?"

Can we prove it that that is, in fact, the case?

And most importantly,

can we prove that if you inhibit that protease,

if you knock out its activity,

that the virus can no longer replicate

and therefore make new progeny viral particles

that would then go on

and establish a new cycle of infection?

[heartbeat thumping]

- AlDS is now the leading cause of death

for men under 44

in New York and a half dozen other cities,

surpassing homicide and all other diseases.

Yet Roman Catholic bishops are meeting this week

to publicly oppose the use of condoms

as morally unacceptable.

This puts them in direct opposition

to U.S. public health policy.

- The new church position

condemns not only the immorality of condoms

but their effectiveness as well.

The draft under consideration in Baltimore this week

says it is, "A virtual certainty

"that reliance on condoms

will result in transmission of AlDS. "

Of the bishop's proposed new policy,

New York City health commissioner Stephen Joseph

says...

- This would be a public health disaster.

It would undoubtedly lead to more transmission,

particularly in high-risk areas of the city,

more disease and more death.

- Catholic conservatives say

not just physical death

but spiritual death is at issue here.

As New York City's archbishop,

John Cardinal O'Connor put it...

- The use of prophylactics is immoral

in a pluralistic society or any other society.

- I think that's it, except,

of course, we have Ann Northrop

giving her sound bite technique.

[cheers and applause]

- Uh, we want everybody to join us,

to support us,

to destroy the power of the Catholic Church,

to make our side the strong one.

And to do that,

we must put out the message that we are the ones

who are fighting for people's lives,

and they are the murderers.

Don't be afraid of the media.

You're talking through them to the public.

We are trying to arouse, to anger an action.

And hone it down to, yes, a three-second bite,

a five-second bite,

just a phrase that will have an impact,

that will say something specific

and that will be understandable.

So...

[laughter and applause]

- Thanks for the advice.

- I don't have a phrase worked out,

and so you're all gonna have to create your own,

so this is empowerment.

[laughter]

- Act up!

Act up!

[chanting indistinctly]

- ? Answer me ?

? Sweet Jesus ?

? Won't you help me? ?

- Please, you're interfering with us.

Step back. - This is Jesus Christ.

I'm in front of St. Patrick's Cathedral on Sunday.

We're here reporting on a major AlDS activist

and abortion-rights activist demonstration,

which will be taking place here all morning.

Inside, Cardinal O'Connor

is busy spreading his lies and rumors

about the position of lesbians and gays.

We're here to say we want to go to heaven too.

- J.C. here with the Fire and Brimstone Network,

and we'd like to ask you a little bit

about this large vision that you've visited upon us.

- Well, we've decided to rename the cardinal.

He's now Cardinal O'Condom.

This is our message to him that condoms are safe.

It's no sin.

[crowd shouting]

[whistle blows, people murmuring]

- Stop killing us!

Stop killing us! Stop killing us!

We're not gonna take it anymore!

You're killing us!

Stop it! Stop it!

Stop it!

crowd: Stop it!

Stop it! Stop it!

Stop it!

[organ music playing]

- How many more have to die?

How many more have to die?

Saving lives is morally right!

- Those protesting

believe that the protests will result

in some change of environment,

some change of attitudes, perhaps.

The church will be teaching

that homosexual activity is sinful,

until the end of time.

That won't change.

[carefree music]

[camera clicks]

? ?

- This is July 22, 1 989.

Now, Sara,

what do you think about your dad being 44?

- Good.

[laughter]

- Thank you. Thank you for your support.

One, two, three.

Yay! [applauding]

We did it.

A lot of smoke.

- Oh, boy.

- I wish those candles would stop smoking.

It's bad for their health.

- That's right.

Okay, Robert Rafsky, do you have any remarks

before you jump off the edge of the porch?

- I have no interest in jumping off the edge of the porch.

I will jump up and down.

I think 44 is a very fine age.

It has a nice symmetry to it.

It has a nice feeling to it.

It's, uh, better than 22 and possibly better than 88.

We'll see.

- [laughs]

- Here's how we planned this.

What we want to do

is run this like a Treatment and Data meeting.

A number of times, we've had people

come to a Treatment and Data meeting

and speak on certain issues.

We try to get in depth.

We try to nail issues down.

This isn't a free-for-all.

Let's call it a working confrontation.

So why don't we start?

This is Dr. Anthony Fauci.

Bob Rafsky.

- I may be wrong, Dr. Fauci,

but it's my understanding

that thousands of people died from pneumonia

because there was no priority within the government

or within the medical system as a whole

to push the known preventative treatments

for a long time.

Now, those thousands of people are dead.

It would seem to me that someone

who was within the government while that took place,

as you were,

must have on their conscience these deaths.

- That is a tough one, um...

[audience exclaims] No, it really is.

It's inexcusable that an academic priority

should ever, ever come before

the health of the people that you're working with.

There's no question about that.

But the reality of the situation is,

there was a great reluctance

among the community of everything

from the scientists to the Congress

saying that what we should be doing

is not telling investigators what to do,

but we should allow them to do

what they feel is the most important.

Now, that sounds awful

when you're putting it in the context

of what we're talking about here,

but the whole world isn't in this room.

crowd: Every 1 2 minutes, someone dies!

Protests won me a Nobel Prize!

Every 1 2 minutes, someone dies!

[chanting continues indistinctly]

- AlDS activists stormed the government's

premiere disease research center.

The National lnstitutes of Health

is where an AlDS cure might be found.

It is where therapies are being tested

in clinical trials.

crowd: No more secret meetings!

No more secret...

- Demonstrators blocked access to buildings.

Scientists and administrators reporting to work

stood around looking confused.

Activists charged the Bush administration

with foot-dragging on AlDS research.

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!

The whole world is watching!

The whole world is watching!

The whole world is watching!

The whole world is watching!

The whole world is watching!

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 Francisco����

before, again, the global community of scientists

and people working on AlDS����

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]

[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, uh����

the rift between the scientific community����all of you����

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 made�����we made a very specific effort

to bring those individuals in

so that they would see what it is that we were doing����

or trying to do���� from the very beginning.

- This was really fantastic stuff

because we were sitting down with them, and����

sometimes from the very earliest stages

of the development of a drug����

and helping them plot out their strategy

toward designing clinical trials.

- The chemists who had worked on the project,

a bunch����� 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 for����

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, sh����

- 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 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 love����

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, and����

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 are����� 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 someone�����

for six months�����

and there was a huge and impassioned debate over it,

and someone said�����

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. I�����l�����

- 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 ever����� I don't ever�����

- 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 is���� is Larry Kramer.

- Why didn't you answer the charges?

- Bill, you're gonna have a chance to talk.

All right, everybody's����

- Don't lecture me,

you stupid, lazy, incompetent shithead!

- Bill, everybody got the flyer����

[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 made����

- 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 guys����

Peter, Garance, Mark, and some others�����

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 that����

patient 1 43, I believe, was his name�����his number�����

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 just���� 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!

Act up! 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!

Shame! Shame! Shame! Shame!

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 naivet� 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, uh����

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"����

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 will����� that I will die from this.

- You know, maybe that is our future,

that we're gonna watch each other die.

It's����that's not a new thought.

We've been thinking that ever since we started the group.

- The way that the recent spate of deaths is����

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 ends����� 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's�����

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 just����it's a realization that this is�����

this is a really great drug, and it�����it 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...

started����� 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 fought����

"and in some cases died�����

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 ?

? 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 ?

? And there's no end in sight ?

? Keeping up ?

? 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 up ?

? Keeping ?

? Keepin' it up ?

? Trying to keep going ?

? There's no end in sight ?

? Keeping up ?

? Keeping up ?

? 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]

? ?