How to Survive a Plague Page #11

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 mono-therapy

was clearly not the way to go.

So let's go back into patients,

and let's go back into

patients with crixivan plus A.Z.T.

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 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 HIV.

You would see their Kaposi's

sarcoma lesions that had been

bright and red and, um, 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 AIDS

a little earlier...

They wouldn't all be dead.

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 AIDS 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...

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...

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.

Fight AIDS!

ACT UP!

Fight back!

Fight AIDS!

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 AIDS 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.

I didn't want to get arrested.

That far I wouldn't go.

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 AIDS 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

AIDS 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 against us...

Great!

Leavenworth, here we come.

...an invoice?

Keeping up

keeping up

Green, green...

Ouch, that hurts.

Keeping it up, keeping it up

Information 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.

I'm really glad to

see everybody here.

You look really good.

Try to keep up in time.

I'd like to suggest that

we not be unethical, to do

a randomized trial of two

different prevention programs.

If we don't eradicate HIV 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.

...plane insky magazine.

We're going to ad-min today.

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

In just over, um, two years,

um, that drug went from

test tube to full approval.

Heartbeat won't go slow

and when it's knowing you

will be there tonight

keeping up

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