All language subtitles for How.to.Survive.a.Plague.2012.DOCU.LIMITED.DVDRip.XviD-ENG

[forlorn music]

? ?

[forlorn music intensifies]

? ?

? ?

[crowd chattering indistinctly]

? ?

[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]

? ?

? ?

- 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]

? ?