How to Survive a Plague Page #10

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 saved.

ACT UP.

Fight back.

Fight AIDS.

The debate over AIDS therapy

has reignited with a new

European study that challenges

the effectiveness of A.Z.T.,

the widely prescribed drug

used to treat the HIV 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, D.D.I.

And d.D.C., were approved

because they were as good as

A.Z.T., which means that they

might not be very useful either.

All this is profoundly dispiriting

for advocates of people with AIDS.

We thought we had made some

advance in AIDS treatment over

the last five years, and these

studies show that we really haven't.

Many activists now admit their

demands were short-sighted.

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 AIDS 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 A.Z.T.

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?

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 over-promise,

but these are the most potent

drugs we've seen

against the virus.

I know that you are pushing

for faster F.D.A. Approval

of these drugs, I know that the

application has just gone for

the first of these drugs to the f. D.A...

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 F.D.A. To reconsider

the accelerated approval process.

We told the F.D.A., "no,

the company has asked you to

approve that drug too soon.

They need a little bit

more data first."

Tag is asking the F.D.A.

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 A.Z.T. And D.D.I.

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 sh*t 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, um,

accelerated approval is not

necessarily the answer.

Tag made their proposal for

this large, simple trial of

18,000 people that they want to

put in a placebo control trial

where one-third would get placebo.

They pushed this idea on the F.D.A.

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!

Apparently there's a big discussion on

accelerated approval and protease drug

development last week on the

floor, so we just wanted to give

you sort of the tag perspective,

and give you a sense of our, um,

proposal on 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.

We need more people when you

have a less powerful drug.

If we were dealing with penicillin,

we could do it in 20 people.

So we put together a large,

simple trial that tried to

synthesize expanded access

in a large, simple trial.

And what we did is we presented

it to Merck, we presented it to

the F.D.A., we wanted to start

a community discussion.

I just wanted to thank Gregg and Derek

for coming to tell us about this...

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.

No, no, no.

- Hey!

- Shh...

Quiet!

'93 to '95 were the worst years.

It was a really terrifying time.

They were the worst years.

And then we got lucky.

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.

Mark collected all of

our writings, pieces that all of

us had done about what had gone

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