How to Survive a Plague Page #4

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.

But if the F.D.A. Says...

I'm only asking that they

be released after there's a minimal

amount of efficacy, not a 100% 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,

lots 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 I will

be back in in a minute.

One of the things we wanted

was a drug that you gave

to people who had

cytomegalovirus and advanced

AIDS, because people who had

both tended to go blind.

It was called d.H.P.G.

In a way similar to A.Z.T., 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.

Hey, hey, F.D.A.!

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 d.H.P.G.

Tell us what's happening.

Well, this is the second

meeting of the bush commission

for reviewing procedures for

approving AIDS and cancer drugs.

And we thought, since the

non-approval of d.H.P.G. 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 gonna be an action in just a

little while when Ellen Cooper speaks.

I guess so.

What about d.H.P.G.?

What about d.H.P.G.?

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 be accused

of being inflexible.

You did it with A.Z.T., I don't

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

I mean, I have to say that

the difference in the data

between A.Z.T. And d.H.P.G. Is

the difference between night and day, as far as...

Sight and blindness.

You're just as blind...

...since this meeting's started, and four

more are gonna die before it's over.

Who represents the

patient on this panel?

Where is the person of

color on this panel?

F.D.A. Relooks at the

d.H.P.G. Data and suddenly, oh!

Agrees with ACT UP.

Ready for a vote?

All in favor, raise your hand.

One, two...

Well, that's everyone.

It was really an amazing

encounter, but it sort

of felt like reaching, uh,

the wizard of oz, like,

you've 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 AIDS 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 AIDS, 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.

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...

...knows no borders!

The AIDS crisis!

Knows no borders!

The AIDS crisis!

Knows no borders!

The AIDS crisis!

Knows no borders!

The AIDS crisis!

Knows no borders!

The AIDS 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 AIDS 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.

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 HIV infection

itself, but for all of the

opportunistic infections, which

actually cause suffering and

death in people

living with AIDS.

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 F.D.A.

I was scribbling madly

in this copy of their,

their AIDS treatment research agenda...

I would go back and

forth between saying, "no, no!

They, 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 AIDS.

A new experimental drug, D.D.I.,

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-AIDS drug will be available

even before safety

testing is finished.

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