01x03 - Lazarus

[bunniefuu]

Oh. Session three

on Friday the 8th November.

Could you just

carry on relating what happened?

Who's sitting and not talking?

And it got to that moment
where something may happen.

I said, look, before anything happens
and there's something I need to tell you.

I got A*DS. And he said,
what do you mean, you're rich?

I mean, I said, not. What did I end?

It's negative.

And I said, what's what's funny?

And he said, well, I was trying to
figure out how to tell you how much I be.

And I actually thought
I was the only person who was like

this young with this disease
in the entire country.

Let's find it quite humorous

when people come up to you and say,
oh, you're looking really well.

As if
to say, oh, you're looking really well.

You're not dead yet.

I don't want to die.

Nobody really wants to die.

I certainly don't want to die.

There's a very,

very high probability within this coming


that I will develop a full A*DS infection.

I have had an A*DS defining illness by now
that technically,

once you've had one,
you don't stop having A*DS.

Even if your immune system recovers.

That is,

this has become a threat to us all.

Everybody infected with this disease
was going to get A*DS and die.

How safe are the British public
at the moment from an epidemic?

Churches that denounce the sin of Sodom
have a right to denounce it.

No, I personally wouldn't
want to work with somebody who has A*DS.

Heading for an A*DS expl*si*n.

An inalienable right to be g*y.

There will be

not a community in the country untouched,

but not remotely near having it cure.

The Princess of Wales

has opened
Britain's first hospital ward for A*DS.

Frightened people.

And when people are scared, they attack.

You are literally fighting for your life.

By 1991, we're told
that'll be a winning case

against. You.

When?

When were you diagnosed? I'm.

It's been ten years since Terry Higgins
had collapsed in Heaven.

Nightclub

and become one of the first British
casualties of A*DS.

It's thought that just one
white blood cell

like this infected with HIV
can pass on A*DS.

Thousands of viruses,
but off the surface of each infected cell,

spreading the deadly infection
around the body.

Confirmed cases from A*DS in the UK
had risen from just a handful of isolated

patients to 7500 people,

and more than


What I in Britain

there are over 15,500
people known to be infected with HIV,

the virus that causes A*DS,
thousands of others unrecorded.

As the epidemic spreads.

So there's the outcry over
how it can be stopped.

By the 1990s,

we still knew that pretty much everybody

who was being diagnosed
with A*DS was going to die.

I had given up hope of a vaccine
being developed with any great speed,

and it was really solely about the drugs
being used to treat

the illnesses
that most people with A*DS suffered from.

There were so many, what we call
opportunistic infections

that could k*ll people.

There was Kaposi's sarcoma.

There was this dreadful PCP cough,
which was pneumonia that k*lled me.

There was dreadful kind of that.

Just eight people up.

There was dementia.

There was blindness. Just

a friend once said to

me, watch out, darling,
that pigeon will k*ll you.

We were we were so open to everything.

When the immune system
had no energy to protect us,

it was like living in a nightmare.

Still can.

It was quite severe.

I energy levels who were very low.

I was in a great deal of,

pains.

I couldn't swallow things.

And having to test the toad
every five minutes

of getting nauseous
and not being able to eat.

Feeling constant, constant pains

in the top of the stomach.

When I'm cleaning my teeth,

I try not to look at the infections
I've got in my mouth.

I mean, they're there and I treat them,
but I don't want to look at them

because if you stick your tongue out and
it's like a sign saying, you know, A*DS.

We didn't have
any treatment of the underlying virus.

We couldn't treat the HIV.

So though we were better and better
at keeping people alive,

who had the infections,
had the complications of of A*DS.

Nonetheless, we weren't stopping them
dying of the underlying

disease.

With thousands of people

in Britain likely to die of A*DS
in the next few years.

It's a race against time
to develop an effective drug.

Once it became clear
the size of the epidemic, I think industry

realized that this was something
which was commercially important for them

and started to devote the huge resources
that they have at their disposal

to developing anti HIV drugs.

What the drug companies were doing
as they became involved in A*DS

research was to scan the drugs that they
already had, but had not found a use for.

And in that scanning, AZT came up.

AZT, brand name

Retrovir, was an unlicensed
chemotherapy drug developed in 1964.

Early US studies in the late 80s on A*DS

patients had shown promise.

I mean, number six, please.

The first trial took place in America.



By last September,
only one patient taking the drug

had died, compared with 16 patients
not taking it.

The first studies on AZT
were done in people who had A*DS,

people who were basic.

It was reported that if you took AZT
every day, if you had A*DS,

then your chance of dying over
the first six months was reduced.

And on that basis, the drug was licensed
in the US extremely quick

and was licensed on the back of data
from just over 200 patients.

A very small study.

The way that we treat HIV has not been
concentrating on the immune system.

It's been concentrating on the virus.

And if you actually

can stop the virus from replicating,
your immune system will rebuild itself.

AZT targeted one of the enzymes,
one of the building blocks

of HIV, making new viruses,
and stops it from working.

We'd seen so many people

so ill and dying to have

a medicine that might make a difference

was a very, very important
and exciting moment.

Retrovir is a major step forward.

Our first weapon
against this deadly virus.

However, it's only the beginning.

We are entering the period when A*DS

may become a treatable disease,

with UK A*DS cases on the rise.

The Government's Committee
on the Safety of Medicines fast tracked

the use of retrovir AZT in Britain,

a new drug, the first to be showing
some results against the disease.

A*DS is being made available
on the National Health Service.

The drug, called AZT,
can prolong the lives of A*DS victims.

In the United States, it's dramatically
cut death rates among some A*DS patients.

Doctors at Saint Mary's and the Middlesex
hospitals will get supplies

next week from the manufacturers
who are stepping up production.

Around 100 A*DS patients are treated here.

Doctors will get enough
of the drug to treat just 12.

When it first is bought with a security

like chain to somebodies hand
because somebody could steal it.

People felt desperate.

It was this thing
that people thought might be a cure.

I was actually on the on the ward.

And to remember,
you know, people queuing up

and arguing about,
you know, I should have it now.

I deserve it more.

And, you know, making the case for it

that I couldn't get the hands on it
quick enough.

They were going to die anyway.

That's not me saying that.
That was insane.

It was like
if it could prolong their life.

For a bit longer.

Yeah.

The A*DS virus
looks like a golf ball with spikes.

It attaches itself to a cell in the body
and injects its genetic material.

This reproduces in the cell,
making more viruses.

The new drug seems
to help prevent this happening.

The evidence is early, admittedly,
as we do more studies with it.

It may look better.

It may look less good, but at the moment
it's exciting that there's a drug.

It now can attack the disease itself
rather than just

treat the secondary complications of it.

The next really important moment was

if this is a drug that's going to help
people who have got advanced disease,

would it be useful to bring it in earlier

and to try and stop people, progressing?

By 1992, the Concorde trial
had been underway for four years.

Unlike earlier American trials with A*DS
patients,

Concorde tested
those who were HIV positive.

To see if AZT could prevent them
transitioning to an A*DS diagnosis.

The first trial I became involved with
was the Concorde trial.

They were signing up
for three year program.

We absolutely hoped that that AZT,
if you took it early enough, an infection

would stop you getting ill with A*DS
and therefore stop you dying.

What they did was

they split positive people into two groups
of basically

some to take AZT
and some as a placebo group.

My beloved partner, Sam, decided

that he wanted to go on the trial,
and he enrolled on the trial.

I said, it's still so experimental.

And he said, if it helps people, then

I want to try.

Anyone who takes part in a clinical trial

is in some respects a guinea pig.

The purpose of the trial is to find out

whether the drug works or not.

That may sound unethical,
but it's not unethical if you don't know

whether the real thing works
or is even more harmful

than doing nothing, as it sometimes is.

They soon became clear that AZT caused

significant issues for those taking it.

I knew damn
well that I was taking the real thing,

and that's because of the side effects.

It was side effects I was expecting,

like anemia,

but also things I hadn't expected.

Like it.

Taste. Perversion.

They call it disgust. You.

Everything tasted as if I'd been chewing
oxo cubes or Marmite.

It was vile.

I couldn't eat an eye.

Nobody had told me about that side effect.

So, you know, it's
not the sort of thing you invent.

So I knew damn well I was on the stuff.

The doses they were giving
people were huge,

huge to start with.

It didn't take long for me to decide.

I didn't want to be on the trial.

And I remember saying to my dog,
I'm coming over this stuff.

There was an argument about it.

Some people say it poisoned them.

People
didn't know they were trying it out.

We were starting from scratch.

We know he was a drug
that was too toxic for cancer patients.

It's not surprising.

It made a lot of
people actually very unwell.

Towards the end of the summer,

my doctors were saying he probably isn't
going to get through the winter

because although I had gained some weight,
I hadn't gained a lot of weight.

I also had muscular dystrophy, which you
know, is a progressive, debilitating,

non curable illness as well.

I thought, well, if A*DS doesn't get me,
this is going to get me.

I'd been on AZT for a very short span
time.

AZT has an interaction
with muscle wastage.

So it was decided that I'd come off.

The doctors were beginning
to get quite panicky about it.

And I remember one

awful day in the bathroom,

had the most beautiful black hair,
and he was trimming it

and his cheeks were starting

to get sunken, which was one of the A*DS.

And he just turned to me and said,
it's starting to show now, isn't it?

I just held him and said, yes,

it is.

He started to fade quite quickly.

A guy I'd got to know quite

well it was going to drug trial
and it wasn't having the best results.

I said, don't
you know? I'm not sure about it.

And he said, Lee, I'm going to die anyway.

This is for the next.

Sorry, I'm going to die anyway.

This is for the next lot,
and we need to honor these people.

He was allowed to shorten his life,

hoping and trusting
that it was going to help

the next lot.

Remember them
running on a beach in Ireland,

in Thailand,
sweating with this beautiful body.

And here was this shrunk
and shriveled man.

The eyes were the only thing left.

The brain had gone.

And I just got into bed with him,
and I held him.

And I just tried to

sync myself with his breathing rhythm.

And the nurse tapped me on the shoulder
and said,

he's gone.

I thought,

oh, thank goodness, thank goodness.

Thank goodness.

Thank goodness.

Because it had been
the most awful experience

for him.

The most detailed study

into the main anti-A*DS
drug, AZT, shows that it's little

or no use in preventing the onset of A*DS
in people with HIV.

The so-called

Concorde study
concluded that while AZT prolongs life

for those with A*DS, it doesn't delay
the onset of the symptoms.

Shares in welcome,
the company that makes AZT, fell.

Following the news,

it was an immense disappointment.

It was a very low period
because although we had

what appeared to be an effective drug,
it it didn't stop you dying.

It was a very crushing moment
when it turned out

not to be the answer we'd hoped it to be.

For some,

Concorde meant far more than a failed
drugs trial.

Actually,
I believe the doses that were given

actually k*lled more people than HIV.

It certainly I believe k*lled, said

within six months.

He just shrank and shrivel and was dead.

I don't think that started

to drive a lot of anti-drug
feeling as well.

There were people who said that, you know,

it was AZT that was k*lling people
rather than the progression of disease.

And it's quite clear

it was the progression of the disease,
but it caused quite a lot of fear.

A lot of the doctors got death threats.

There was posters that went round that
put it round Soho naming

certain doctors,
saying they're poisoning us with.

He said to me,

I can remember being phoned up

by someone who said something like,

you gave my brother AZT and it k*lled him,
and now I'm going to come and k*ll you.

A group
was set up called Gays Against Genocide,

which, accused me of,
having k*lled g*y men

by encouraging them to take part

in the Concorde trial.

Jane's been such a controversy

because we're so desperate for anything.

It came along.

People were so great at it.

And thank God we got something good, cause
it wasn't very imperfect thing.

We did need the imperfections
becoming clearer.

But I just couldn't get into this thing
about

being the person dependent
on this bloody drug.

With its limited usefulness
to possibly toxic side effects.

So I came off it, and I was glad to live
because I got so much better.

Also angry.

I mean, I mean, it's my anger that makes
me be involved in different campaigns.

I'm angry that,

I mean, 100,000
people have died in America of A*DS.

In this country.

There's just over 2000.

I think it's important
to keep up the fight.

Really.

When you think you're dying
or your friends are dying,

you are prepared to do quite a lot
in order to improve your position.

The urgency to do something,
to get anything that will keep

people
alive, was a real wellspring for activism.

Whatever form it took, I've worked

with in HIV my entire career,

and I think anybody who worked in
HIV in the 80s

and 90s had a passion, a real passion

for fighting for rights and for fighting
against the wrongs, really,

because they were really evident
in how people were being treated.

The anger and frustration
felt at the failure of AZT

was channeled into direct action
groups like Outrage and Act Up.

Act up

was a political organization
that was trying to raise awareness

about HIV.

To make grassroots activists movement.

They tended to be quite spectacular.

In America,
things are mainly focused around drug

trials, squashing.

There was the famous Dion
at Saint Patrick's Cathedral,

where they took bloodied hands everywhere.

Doctor Paris lowered

a giant condom over a huge monument
in the center of Paris.

A*DS activists chanted
that they declared w*r on the disease.

I think for many people who were inactive,

who were positive themselves or had A*DS,
it gave them a sense of empowerment.

A*DS Coalition to Unleash power.

Those words mean something.

Action equals life.

What did you do with your anger?

I took it and f*cked up big time.

But arrested at every opportunity
I could get.

Cause the riots left, right and center.

We planned a peaceful demo
and we'd go lie on the road,

which effectively
meant police would start arresting.

So you kind of let every opportunity I go
up just cause up to the cows.

There was a real sense

that people with HIV
should hide themselves away.

They shouldn't be out in public
rubbing people's faces in it.

And John Campbell was one of the
very few people that thought, f*ck that.

I mean,
he was really in your face about it.

I was like this young kid who had A*DS,

who was out there on his own.

I was trapped between the reality
of living with A*DS

at the same time
becoming a media star with A*DS.

Today, we're going to look at the reason
so many people are

so frightened of an illness
that's really very difficult to catch.

The illness we're talking about is A*DS.

Now, John Campbell, you've had A*DS
for seven years, is that right?

John Campbell lost his job
as a hotel assistant manager

after his employers discovered he had HIV.

I ended up having newspaper
articles left, right and center

magazine features, TV programs.

Every time there's a new story about
A*DS, I was who was pushed out there.

We knew we came to this country
that HIV was a problem for everybody.

The government knew that
and they didn't take that on board.

People don't care

because this is what's coming out of
this is is finally having a conversation.

I stopped being John Campbell
for a very long time and became A*DS.

I just became this walking A*DS,

and I did a pathetic little bit.

I personally wouldn't want to work with
somebody who has A*DS.

My concern
is that the maybe sense of hybrid disease,

which we don't know about yet.

I'm not h*m* at all.

So why and why are you in the studio?

If you think I'm such a risk?

One of the remarkable things

about the response to A*DS was how fast

people living with A*DS got together
and made to make their own demands.

We are not victims.

We are people living with A*DS.

That message was
was actually really important.

It gave us a sense of purpose
and it gave us a sense of hope.

I mean, I think people can look back
and see what happened with A*DS.

This sudden movement of people
who had a condition suddenly challenged

the system.

And now you've got patient groups
all over the world doing similar

and disability groups,
and they've modeled themselves on a lot

of the stuff that A*DS did.

While activism provided an

outlet for frustration
and anger at the lack of medication.

Those living with HIV
were increasingly drawn

towards alternative treatments.

We saw a whole range of cures
being peddled.

There was a guy in central London
who had a special

big microscope, which he would look down
while you were on the table,

and he could see the worms inside you,
and he'd give you treatment for the worms

snake venom put under your tongue,
and electric shocks.

It was just crackers.

It was like,

God knows, some of these concoctions
people were staring at.

But what?

He would try anything, wouldn't you know?

I remember one ridiculous one,
which was a free holiday

swimming with the dolphin at Dingle.

So there was some mad theory

that swimming with dolphins
would improve your immune system.

Well, I don't think the dolphin
did anything for my immune system.

It was a standoffish creature
who didn't want to know me.

But I think swimming in the freezing
Atlantic twice a day in a wetsuit

and climbing up mountains in the
afternoon made me very fit.

Do you think clearing

HIV has changed your life
from what you had expected?

When I was first diagnosed, I wasn't sure
how long I was going to live.

We were living day by day just because
we didn't know what was going to happen.

Being positive,
I think I been much more aware of my body

and how it should function.

Have you tried any other medicines,
whether it be herbal medicines?

The only other thing I've noticed does
work is cannabis.

I can feel the difference
in the peripheral nerves.

If muscles are in spasm
and there's stabbing pains,

it certainly takes
the edge off the discomfort.

And how are you dealing
with your emotions?

Were you getting any formal help
with that?

I met therapist and she believed very much
through visualization.

You could actually heal your body.

She asked me to imagine the virus
as something and then to fight that.

And the next day when I got out the bed,
I didn't really have to push myself up.

And I walked a little bit
without my sticks,

which was the first time I had really done
that.

Well, that moved me on from being quite

pissed off

with my life into well,
I could not go into the bars again.

To me that was like a big, big step.

I developed this concept of coping

with going
beyond the losses called Sleeping Dragon.

I'm not going to be frightened of it.

I'm not going to be ashamed of it.

I'm not going to be guilty about it.

I'm going to recognize that

this virus is ever going to be with me,

and my life's work now is ways of

keeping sleeping Dragon the virus asleep

because I saw people
who couldn't keep sleeping,

Dragon asleep were gobbled up.

I know I took on an armor.

I think we all had to.

Coping strategies included

continuing to go to clubs at the weekend.

I salute through know

they became our sort of cathedrals.

The need to have a euphoric time

dancing with people

became all the more important,
I think because of what was going on.

We partied really hard

because I think some people realize
that they weren't

going to be able to party for much longer.

I can't get no sleep.

We need to make.

Being diagnosed as positive,

it made me think harder about living

and having a good time.

One thing that is true
is that there are no certainties

and sort of actually, life is chaos.

I think we just try to make some kind of,
sort of

order out of that chaos.

I don't think it's a coincidence

that ecstasy took off on the g*y scene
the way that it did in the 90s.

People.

It lives to this this awful time
where sex in

many g*y men's
minds was linked to disease and death.

Suddenly this drug came along, and
it basically made you forget all of that.

And you left everybody,
and you weren't fearful about anything.

If there's a party in the A*DS sector,
I'm bound to turn up

with at least five bottles of Bowie.

And I don't know how many drugs
normally do. I tend to get completely.

I asked, so people
just see me like, you know, mad person

who just gets completely drug f*cked

or pissed out of his head
and causes chaos,

which is great.

While some g*y

men lost themselves on the dance floor
beyond the community,

the spread of heterosexual
HIV was dramatic,

increasing.

The health

education authorities warned
that HIV and A*DS is still

spreading
among Britain's heterosexual population.

Nearly three out of ten people
diagnosed as HIV positive

in the last year contracted the virus
from heterosexual intercourse.

They're not g*y. They didn't inject drugs.

The rapid growth of the disease
is within the heterosexual community. Now.

Session number one with Emma.

It's the 30th of October.

There's just this guy.

You know, when

when I realized
we were going to start sleeping together,

I just, you know,
I was concerned about getting pregnant.

So I said to him, yeah, if you're going to
have sex, we're going to go use condoms.

And he just said, fine, no problem.

So I just didn't think anything of it

until the condom came off or it broke.

But he been completely hysterical. It

and I kind of assumed again
that it was pregnancy.

He was worried about

said, don't you know, I've got.

And then he said that
I should have been positive.

And I couldn't really believe it.

And he said,
you remember the previous girlfriend?

And I went, yeah.

What about.

And he said, oh, well, she's HIV positive.

And certainly at that stage
I still didn't,

you know, wasn't concerned about myself.

It was more him.

I just thought, oh my God, does that mean

he's going to get sick and drop
dead on me?

You know, because obviously head over
heels in love with him.

Of course.

In 1990,

I began to be, aware
that many more women were coming in

to our services
and many more women were falling sick.

And then by the mid-nineties,
significantly more women.

It's a sexually transmitted infection.

It affects people who are
having sexual intercourse.

I heard about

A*DS through, leaflets at cancer,
everybody's doors.

But it wasn't
something that was gonna happen to me.

It was something that was kind of
over there somewhere else.

And, you know, it just.

It wasn't even on my radar.

So that the.

I could become infected with HIV.

Not at all.

I started to feel really, Well,
I got a bit of a funny rash.

Everything was pretty fuzzy.

I had a really, really high temperature
and then cold sweats.

But as I started to get better
after a couple of weeks

and the just said it was glandular
fever type virus that you had,

and there's this program
where the woman saying,

oh, and I have this, and I have swollen
glands in my neck, groin, armpits.

That's all.

That's what I had heard.

And then she said
that it wasn't in his HIV.

And yeah, I was like, sh*t,

you know, I was going to k*ll him.

Found it fast because I knew they did.

Same day testing.

And I just thought,
well, just get it over and done with.

It's not going to be
you can be quite simple.

In the waiting room,
there was another girl,

and she sort of went in first
and was sort of out within five minutes.

And I thought, oh, great, you know,
they're just going to knock us all out.

Then you know.

So I went in and he kind of like
pulled me in and sat down and

he just said the results are positive.

I've given absolutely

no thought as to what I would do
if it was positive.

I had not set anything up.

I had not told anyone
I was going to collect the results.

My sort

of first thoughts were was,
you know, how long have I got?

No, I just expected to get sick and drop
dead.

You know, it's naive

little me thinking, oh no, it's only g*y
men and drug users who get it.

And I couldn't really believe it.

The finger was really firmly pointed

at the people who were infected with

with HIV as being.

Promiscuous or deviant.

And that was for g*y men.

But it was also for for women.

The stigma
about all sexually transmitted diseases

is important,
that somehow it implies, bad behavior.

Somewhere an HIV
carries it with particular power

because it's something that can k*ll you,
and that it's associated

in a way that I think has made it

a much more powerful,
stigmatizing disease.

So I went to visit

my mother's, and we were just chatting
sort of generally.

So I told her that

that's volunteering for a charity
supporting people with HIV and A*DS.

Her first reaction to that was,

why do you want to bother with
people like that?

They've got all they deserve.

So I realized that wasn't the right time
to tell her, and I came back to London

and wrote her a letter
explaining my diagnosis.

I remember

posting it with second class stamping,
so she was on the phone pretty early.

Why did you bother doing your degree
if you're going to be dead by Christmas?

And then said, you know,
it was too much of a shock for her.

She didn't know how to deal with it.

I wasn't to expect to hear from her
for a long time.

And she sort of just left it at
that and put the phone down.

It was a really scary time.

I didn't know anybody with HIV.

I was the first person I knew with HIV

and there weren't services for women.

And so I went to the services for men.

Increasing need for female support
had prompted

the founding of Positively Women in 1987,

but many women also use
the established groups

set up for and run by g*y men.

I actually thought

that I was probably
the only woman in London living with HIV.

My friend took me on to a support group

called Body Positive Angels in Ascot.

And of course, there are a lot of g*y
men who went to access services there.

So we interacted a lot
and they'd been there.

They'd already experiencing the stigma
of HIV and the stigma of being g*y.

And so, so they were dealing with a lot.

And so when we came along,
of course, they had they had the tools

to be able to support us.

And it was kind of like a family.

It didn't matter whether you were g*y
or whether you were straight

or whether you're black or white
or a woman or whatever.

What united us was with the HIV.

I met a

bunch body positive in Manchester,
and I went to the party there.

I can't remember what year it was, but
there were there were a couple of women,

and there were about 96 men.

So, you know,
I had quite a period of time

where I was like, I think I might be a g*y
man trapped inside a woman's body.

I met a g*y man who was positive,

who introduced me to a world
I never knew about.

I never knew about.

You set me cottage in.

So you've been a long time in the toilets?

It was just.

I was just,

immersed in a world that I didn't know
nothing about. And.

And I was really looked after.

They really took care of.

Then I started working for an organization
called Positively Women,

which was set up by two women
living with HIV.

And that's when I started to see
other women, living with HIV

experts and other women in HIV.

It was great.

And I mean, what I mean, great
is the fact that there were other women

who are going through the same thing,
and that peer support

is something that kept a lot of us
going in relation to them.

Ali, a g*y man who started the activism.

If it wasn't for them,
many of us wouldn't be here today.

As new diagnoses of HIV increased,

the numbers of deaths from A*DS
continue to rise.


since the epidemic had begun.

At Saint Mary's,
there were a death every working day.

It was a very shocking phenomenon,
particularly when people were young people

at the height of their creative or
their professional powers and were dying.

It was it was a very,
very painful and shocking time.

I've seen a lot of friends

die from HIV over the years,
but there have been peaks and troughs.

It dropped a bit when they introduced AZT,

then went back up.

So it's, you know, already
started to see people die

from support groups I was in or assist
someone I was very close to.

How did you cope with seeing him?

For those last few months?

It was awful because,
I mean, he was such a highly intellectual,

intelligent man,
and to see him just reduced

to sort of skin bones
with no sense of who he was,

you know,
I just imagined that they wouldn't

look any different
after they'd stopped breathing.

But that is certainly
a very subtle difference.

The sort of sparks going out.

Because it was really important

that I spent time with him
after he would after he was dead.

Just to sort of

get it into my head
that he wasn't going to come back.

When you love someone,
even though he infected me,

I never stopped loving him.

Drug trials were continuing,

but no breakthrough
treatment had been developed.

Hospital A*DS wards were filling up,
so the need for specialist HIV and A*DS

hospices like the London Lighthouse
became more pressing.

I was diagnosed as having A*DS now,

and that's when I was transferred

to the London Lighthouse.

We had a little haven

and that's where people came to die.

There was 12 people on the ward

and when one died in the morning,
a candle would be lit at the desk.

And I remember one morning going down

and there were three candles
and light out of 12 of us.

In one night so many people died.

There.

And I think we helped people
die as well as they could.

It was it was also
it was my people, you know,

it was I'm going to get emotional.

And these were my peers.

These people were dying.

They were my age,
you know, and they were living my life.

How was

your circle of friends
and incorporated people dying?

I mean, how how as a community
do you think that we are facing this?

Because, I mean, death
does have a new reality now, doesn't it?

You've got to go on living
because it's through one's own

living that people are remembered
because you can talk about it.

Then of course,
there are moments when you just

miss, you know they're not there.

Friends are not there to talk to

or, but you go on and you try

and remember what was sort of positive
in their existence.

Everybody's free, had a fear,
and we had these living wills,

and we used to live,

get people
to put whatever they wanted in them.

And we used to plan funerals in them
and we would do all sorts.

One of the many things that A*DS

revolutionized was funerals.

And they, of course, included a disco.

Some.

Did not upset you having those daft songs?

Now, I like those that
that remind me of the daft

bloke in that box.

There would be quite outrageous
some of them.

One of the first funerals I went to

was somebody
who was into the leather scene.

I remember being young and 23
or something was going,

why is he bringing that man in on a lead?

I remember

a guy who was into fetish,

and so he wanted to wear his rubber suit
and to his funeral

and yeah, I think, yeah, it's
not easy to get into a rubber suit,

and it's not easy to get anybody into it
to get another passenger of a suit.

Certainly not easy to get dead body
into a suit, but it was always

I always felt, again, like a privilege
to be able to do these little things.

I wanted to be remembered as

the person dancing in heaven for the fun.

I don't think they'd wanted it to be ugly.

And they bring a band of

very moving, very sad.

That's my boy I left in there. No love.

I'm very glad I'm here now.

Although I don't think that someone
as young as me should be going to

so many funerals.

I stopped counting funerals

after it had gone to about 30.

It was

so hard.

Seven session three continuing.

And Jeremy,
you chose to specialize in HIV nursing.

What were the reasons that you decided
to get into doing nursing?

I've been doing sort of informal, informal
caring over the years,

and somebody just suggested nursing.

So then I qualified

and worked
at various different places, including

community
settings like the London Lighthouse,

which is a very good experience

of how to care for friends who've died.

It does make you less anxious about dying

when you see how peaceful it can be,

and how civilized it can be.

Have you made any plans
to let you make the die

made? Well, what you've made.

I'm in the process of process
of making a will.

Just want the very simple thing
I want to be cremated

and sprinkled somewhere exotic.

Either in the sea or if they do,

cheap budget
flight flights on the space shuttle.

By the time I die.

I thought it might be nice
to be dumped over the Atlantic somewhere.

I'm a few hundred miles from.

The thing that used to really,
really affect me

was the grief of the
people who were left behind.

Like that absolute sadness.

That actually sadness
that other people used to be hot

or heartbreaking.

We were a generation that was wiped out.

We lived under a death sentence.

Peter Allen now Frances

drop, drop drop dead gone, wasted.

And all the time.

I'm sitting thinking,

when's my turn coming?

It felt like being a living timebomb.

Waiting to explode.

Me? The stuff
about our sexuality being deviant.

And we've got all these things
about being God's judgment.

And we've got g*y
people saying this was necessary.

All of their statements, what's going on
behind them absolutely appalled me.

And A*DS is a horrible, terrible thing.

We learn lessons from it.

But you didn't come here to teach us
anything.

You know, it doesn't have a meaning.

It isn't a divine purpose.

It isn't some sort of nature's
criticism on our sexuality

and the way we live our lives within.

For me, my h*m*, the experience

of having sex with a living,
breathing, warm

man is the most life
enhancing thing that there is.

And A*DS is a terrible thing.

It has no hidden meanings,
no hidden purpose.

It is an accident
of nature and call one. But

that is our destiny.

We think that we're somehow above this
human beings,

above nature.

We're not.

We are. To die
and what comes in between is what matters.

Make the most of this

for me.

I was so young
when it all began for me that,

I don't think I can realistically
say what my life would have been like

any other way.

A*DS is actually my entire adult life.

I think at the end of the epidemic,
if there is ever an end,

you will certainly be able
to look back to the 80s and to this point

and say that A*DS
had an impact on society, giving them

the inclination to stand up and say,
you know, I actually have a right here,

I can't.

Much of my life
would have been like without it.

By 1996,


been discovered in the g*y community

in America, over


with HIV worldwide
and over 4 million had died.

When I started on the HIV unit

at Chelsea, we had 17 beds.

At that stage,
we had 60 people basically dying from HIV.

This isn't 60 people
with HIV coming in for a rest.

These are 60 people
with opportunistic infections, tumors,

you know, their immune system
shot to pieces.

You know,

we had a whole floor of the brand

new hospital for.

I slowly lost weight.

I got various conditions.

I basically had incontinent diarrhea.

I had to be near a loo.
I lost a lot of weight.

People talk about A*DS
as if it's a sort of linear

sort of slowly
you get worse and worse, but it's not.

It's exponential. You get a bit worse
and you get a bit worse.

Then you get a bit worse.
And then the last few months

it crushes the life out of you.

We want a strategy, not another tragedy.

Following the failure
and disappointment of the AZT trials

three years earlier, scientists
have continued to test medications,

this time as a c*ck of multiple drugs.

As soon as you could see that with

a combination of drugs,
you could alter the natural history,

you could stop
the inexorable decline to death.

Then it became a question
of how many drugs did you need

in the combination
to get people back to health again?

What do you want to do
is to stop the virus reproducing itself.

And if you want the US
to stop reproducing itself,

you have to block it at all
the points that it can use to reproduce,

because if it stops reproducing,
it stops damaging the immune system.

It was a light bulb moment,

and of course

we all wanted to put it into practice
as quickly as we possibly could.

What we didn't have was the clinical
trial results to confirm that.

They were announced in Vancouver in 1996,

the first conference where
there was a piece of good news every day,

all because of the trial results
of a combination.

We want each one of you

to go home and disseminate
what you have learned here this week,

so that when we see each other again
in the not too distant future,

we can truly say that Vancouver 96
was the catalyst for change.

Thank you.

I can remember standing in

front of the screens
you couldn't get into the room.

It was packed and then looking up at
screens and going, oh my God, oh my God.

And that was when a shaft of light

hit all of us, and we suddenly realized
that people who were taking

three different kinds of drugs
at the same time were putting on weight,

were looking
healthier, were feeling health, yet

three drug combinations
were reducing the levels of virus.

And individuals taking this combinations
to undetectable levels.

This was a complete turning point.

That was an absolutely amazing point
in the history of A*DS,

because this was the first intervention
that could stop

you dying.

When the third drug,
a protease inhibitor, was added,

the virus was blocked
in three parts of its life cycle,

finally stopping it
from replicating in the body.

The results would prove miraculous.

The technique appears to reduce the death

rate among A*DS patients by nearly 40%.

We started to give triple therapy

and it was almost overnight,
you know, this kind of Lazarus effect.

I rose from the dead. It was incredible.

Within two weeks, diarrhea
that I'd had for for four years dried up.

I got my appetite back.

I had got my energy levels back.

I started putting on weight.

It was extraordinary.

There's no other word for it.

I know there's somebody who got through.

He must think I'm crushed because.

Because every time I see and I keep
hugging him like there's some like.

People fought hard for those medications.

People

were prepared to go through

experimental treatments.

Tony Whitehead

has been HIV positive for a decade now.

He's taking a combination of three drugs,
including the new protease inhibitors,

which have pulled him back from the brink.

They talk about the Lazarus effect.

I didn't exactly get off my bed and dance,
but I felt so much better

after some months on these new medicines,
a complete change

in not just the way I felt,
but also the way I was thinking.

Just this thought coming into my head,
hey, I'm maybe I'm not going to die.

Maybe I got to start thinking about

a life ahead of me,
not just getting through the night

or getting through the next week.

It was wonderful. It was.

It was also a bit scary.

I mean, I'm amazed
I was diagnosed while I was,

I don't know, 33.

And I'm 72.

You know,

I reckon that I was on my deathbed
that that was it.

But nothing was going to change.

And within four weeks of starting

my medication, I had so much energy.

That was how powerful these drugs were.

And that was amazing.

And it was
it was just like a whole rebirth.

Do you think there'll be

ever, will ever be a cure?

I think we are slowly progressing

towards effective long term treatment,

but I'm not sure about Kim.

We're now

at the stage where HIV is effectively
a chronic, manageable condition.

It's so much more positive
now than when I was.

Well, when I was diagnosed,
there was no treatment.

If someone is unfortunate
after being infected with HIV, then

if it's caught early,
they can effectively live

a normal life with a normal lifespan.

I remember
starting treatment was a huge issue

because I didn't want
the daily reminder of my virus.

Now I see the treatment

as something that allows me
to have the life I always wanted.

But on the flip side, it's
still that sort of demon on my shoulder

that has been there more than half my life
that I will never escape from.

The key things, as well as increased
life expectancy,

are the fact that effective treatment
means you can't pass HIV on.

You are no longer infectious
to other people.

I'm free to have sex without fear,
which I just think it's

an amazing bit of progress
that I live to see.

Taking treatment means that

I cannot pass HIV on, and

that's huge in terms of even
sharing your status with somebody else.

It also means that if, say, a pregnant
woman takes treatment

and which is advised now during pregnancy,
the likelihood

that they will not pass
HIV on to an unborn child.

I have one daughter
who is now 23 years old.

I never thought that would happen.

We now have a medication called Prep,
which means

if you take prep, you can have unprotected
sex with somebody.

You're not going to become HIV positive.

So we now have all the tools to wipe this.

Stuff.

So we now have all the tools
to wipe this out.

Life changing medical progress

changed the future of HIV in Britain,

but the impact of A*DS on the g*y
community created a lasting legacy.

What was amazing was
that was the way that the

the community,
the g*y community in particular, you know,

responded.

I think that the that it challenged
the g*y community.

I think A*DS was our proudest moment.

I do think that

we were there loudly

in the in the media, in the streets,
but also in offices

with people in government,
people from the health service.

If we hadn't been there, certainly there
probably wouldn't have been the

the urgency for mass public health

campaigns, the that we saw at that time.

I never actually thought
it would be on television or radio

talking about g*y sex and,
you know, playing with condoms.

I oh, I was
that was pretty wonderful, actually.

No, I didn't see that one coming,

so to speak.

The overwhelming

emotion is one of terrible sadness because

so many of the people who who had been
my friends for years, who were the.

Important landmarks in my life,
just just died

just when.

And what are your thoughts
about the future?

I'm going to spend
at least one last summer in peace

and just r*pe the entire summer,

because I got my A*DS
diagnosis on my 20th birthday.

I kind of set myself
this far off vision of getting to 30.

I never thought I'd do it,
but I don't mind getting up.

And how's it felt to sit down and record,
you know, life history?

Satisfying.

Actually,

I'm still here at the end all,
and kind of let you know

I'm still here at the end of it all
and doing quite well.

Thanks for joining us.

Thank you. For.

No bad point for the A*DS sector.

I think when I was a child,
I didn't want to be a nobody.

I might not be a huge somebody,
but I'm not a nobody.

Discover more about the reality
of living with HIV and A*DS

through untold personal stories
captured by research and video.

Go to bbc.co.uk

forward slash unheard tapes and follow the
links to the Open University.