All language subtitles for BBC.Documentaries.2018.06.27.The.People.VS.The.NHS.Who.Gets.The.Drugs.EN.SUB.HEVC.x265.WEBRIP.[MPup]

JOHN HUMPHRYS: It is now
29 minutes to 8.

Most of us have probably
never heard of a drug called PrEP,

but we're about to.

It's quite an extraordinary drug.

It's able to reduce the risk of
infection of HIV by almost 90%.

This programme contains
some strong language

We have the resources
to wipe this out.

PrEP. PrEP. PrEP.

PrEP. PrEP. PrEP.

I want PrEP now.

It is a kind of medical miracle.

Undoubtedly, it's a game changer.

We're decades into

our sex lives being associated with
risk, danger, death.

PrEP can change that.
PrEP can change that.

We have been working for years with
the NHS to make this happen

and now they turn around
and say they can't do it.

NHS England says it's under
no obligation to fund the drug.

It was absolutely horrifying.

10, 12,000 people needlessly
contracted this highly stigmatised,

what can be a life-ending condition
for some people.

We want all people with health needs

to be able to access
the drugs that they need.

That's outrageous.

Why should the taxpayer subsidise
a reckless sex life?

PrEP has always been controversial.

Putting someone on a daily dose
costs around £5,000 a year.

The NHS is facing its biggest
financial crisis in its history.

If we don't do this,
what are we for?

Take responsibility for yourself.

That's what this is about.

We don't even need the NHS
right now.

We can do it ourselves.

You're taking on the government.

It was a David against Goliath
battle.

Four of the biggest clinics
say they've seen a 40-50% drop.

That is an absolutely
mind-boggling thing.

The emotions and the morals of it
are irrelevant.

Do you save money?

Is it cost-effective?

These are the things that matter.

Ricardo, Raymond...

..Tommy, Ian...

..Fernando...

..Mark...

..Fitzgerald.

If we go back to the really early
days of the epidemic...

..it was about death.
It was about a long, painful death

that hit really young people,
young men,

at the prime in their life.

You felt so impotent, I think,
as a medic,

but everything was done to make
death as dignified as it could be.

It was this dreadful pandemic
which was, at the time,

completely untreatable.

How do you prepare for that?

That spectre of death and illness
just hangs.

It's hung over
the gay community particularly

for nearly 35 years now.

I'm HIV-positive

and, although I am probably
going to live a normal life span,

it means that I'm going to have to
take these...

..for the rest of my life.

Cos, if I don't take them,
a terrible fate awaits me,

and I've seen that fate.

There's still stigma,

which is rampant and can really
damage and destroy lives.

It has an impact on a person's
mental health and their wellbeing,

just to know that
you've got this thing.

We're talking about 30 years of fear
caught up in one virus.

I don't know if they'll ever be able
to completely cure HIV infection
once you've got it.

It will need science
we don't even have yet.

And that's why we need to prevent
this disease, not just treat it.

We have made amazing progress
on HIV treatment.

If you diagnose it in good time and
you take treatment as prescribed,

you will have a normal lifespan.

But the problem is we have not been
doing as well at prevention.

There was a gap in terms of
the tools at our disposal

to really get on top
of the high rate of transmission

that we have been seeing.

For the last 30 years,

the number of people acquiring HIV
in the UK has increased every year.

It's been happening quietly, away
from the headlines but, of course,

it's still a very serious
lifelong condition

from which there is no cure.

Condom use had been around for
a long time, so there were no real,

major, significant changes
until PrEP came along.

It is a kind of medical miracle.

Pre-Exposure Prophylaxis.

Pre-Exposure, meaning you take it
before risk of exposure to HIV,

and Prophylaxis,
which means prevention.

Tenofovir is one of the drugs
that are used to treat HIV.

Right from the beginning,
it was thought of

as something that might work for
prevention as well as for treatment.

PrEP is an oral tablet
taken before sex and, basically,

if HIV tries to get in,

then the drugs will block that
from happening.

And what it does is block HIV's
ability to multiply, so the body

is able to just eradicate
those cells or they die naturally.

HIV can't get into the bloodstream
and that infection is prevented.

It sounds very simple,
and it is very simple.

So, the Proud study
looked at gay and bisexual men

who have sex with men.

We set up Proud to compare PrEP
users to non-PrEP users, and the way

we did it was to randomise people to
get PrEP straightaway for two years

or after one year
for the second year.

In October 2014, actually,
the trial was stopped early.

Our independent data
monitoring committee said, OK,

there's such a high level of
effectiveness

and such a high level of risk,

we would like you
to offer everybody PrEP,

so including those individuals
who had not yet got access to it.

In other words,
the PrEP had worked so well

it was unethical to hold it back

from the other half of the people
in the study.

Proud showed an 86% reduction
in new HIV infection

in the people taking PrEP
but, actually, people taking it

consistently, as prescribed,

would get more protection.

Biological effectiveness
seemed to be 100%

because no-one who was taking
their PrEP actually caught HIV.

That was big at the time.

That was the historical moment.

Nobody from then on
could deny that this thing worked.

It's a real game changer.

PrEP is the additional tool we need

to really get on top of
the epidemic.

It's the piece we need

along with the treatment,
along with the testing,

to get early diagnosis.

Nothing else fills that gap.

But people couldn't get PrEP
in the UK at that point

unless they were part of
the Proud study.

The process of getting new drugs
and new innovations

approved within the NHS
is incredibly slow,

and I won't lie and say that I don't
wish that that could be quicker.

By the end of 2014,
the NHS had begun the process

to think about whether PrEP
should be made available.

The Working Group consisted,

obviously, of officials
from NHS England.

Public Health England were there.

Local government was represented.

Community was represented,
I was on it.

Obviously, doctors were there
as well.

Once a year in the summer, there is
a major clinical prioritisation

where they look at new things

and decide what they're going to
commission.

We were desperately
trying to get ready for that.

The Clinical Priorities
Advisory Group.

CPAG is made up of
senior NHS England officials

and a range of experts
from different fields.

CPAG receives proposals
from various groups

across the specialised services,

and their job is to rank those
proposals in order of priority.

Health care resource allocation -

these are life-and-death decisions.

The NHS has got a tough job.

It's got to make
the right decisions,

we've got a limited budget.

Money for one patient
means no money for another patient.

And it's got to keep
public opinion sweet,

and that's a very difficult
balancing act.

I think, for most of us,
the Proud trial provided us

with the data that we needed

for PrEP to become
available almost immediately.

Now was the time that NHS England

would roll out PrEP
without question.

It was very, very difficult...

..and frustrating as a clinician

to know that this kind of
HIV prevention tool

was out there, but we couldn't
access it, we couldn't prescribe it.

And we were seeing people
who we knew were at risk

and then coming back with HIV.

# Catch a star if you can

# Wish for something special...

I first heard about PrEP
when I was in New York in 2015.

Basically, everyone was on PrEP.

And I'm, like, what's PrEP?

And they're just, like, "Oh, it's
this great new thing, you know?"

And I'm, like, "OK,
yeah, it sounds great.

"Let's do it."
So, I started on PrEP then.

When I was leaving, they were even,
like, "Yeah, if you're going away,
here's some to take with you.

"Here's, like, two extra months
to tide you over and everything,"

and I was, like, "Wow, they
really love giving everyone PrEP."

# Are you ready?
Are you ready for love?

# Yes, I am. #

I came back to London
and it was the absolute opposite.

PrEP stops HIV!

When do we want it? Now!

The government
hadn't got their act together

and made PrEP available yet.

When do we want it? Now!

I was surprised
and I was raging as well.

I'd been given this
amazing new thing,

and then it had been
taken away from me.

That was when I first met Greg.

He was quite cute and quite sporky
and a little bit sassy,

and I fancied him a little bit.
Not a lot, a little bit.

And we got on really well, and I was
trying to get PrEP and he was

already on PrEP that he'd got
in the States.

He was running out of PrEP

and I hadn't got any at all,
so we were about to

try and hatch a plan how we could
both get PrEP for ourselves.

We immediately hit it off, and we
were talking at very high speed.

I had a lot of energy,

and I was new to all this and I was
ready to jump in with both feet,

and that's exactly what
Greg was doing as well.

Several people around me

that I really cared about
had become HIV-positive.

That was on my doorstep.

And I saw what it did
to other people.

And I was thinking, well, you know,
I'm also quite close to this.

I could see this could be me
next week as well.

We need to do something about this.

We can't just sit here
and keep watching this happen.

At the time, we were diagnosing
five people a day with HIV.

That's a lot of people.

And each one of them, just don't
think of them as a number,

think of each one of those
individuals.

My God, it's an adjustment.

HIV is a huge thing
in gay men's lives.

And PrEP can change that.

PrEP can change that.

If people are at risk of HIV and
they're able to afford to pay for

prevention, then that's great,
but I mean, really,

this is a fantastic preventative
tool which everybody who may benefit

from it should have access to.

Truvada was, like,

way too expensive
for 99% of people that needed PrEP.

Surely, we can find somewhere that
we can get generic PrEP to import.

I mean, that would work, right?

We knew India had this funny law
where they could, like,

make generics but no-one else could,

and we didn't really have
a full understanding of this.

I was, like, OK, well, let me ask
my friend who works in the NHS.

And I was, like, "Oh, hey, babes."
He was like, "Hey, babes."

"We're trying to figure out
this situation with PrEP.

"Like, can you kind of point us
in the right direction

"cos neither of us really have
a clue what the fuck we're doing?"

The person gave us anonymised data
of a small group of people who had

had tests done on their blood
after taking this generic PrEP -

basically, to prove that
the drug is genuine.

It's real drug.

There were a bunch of us who'd been
following the stories around PrEP

for a number of years.
We started to think,

what could we do and how could we
cut through all of those

kind of institutional barriers
that other people were caught up in?

Alex and I were a bit like,
"OK, like, this might work."

We were starting to think, we don't
even need the government right now.

We can do it ourselves.

We're going to tell everyone to go
and order pharmaceutical drugs on

the internet and start taking them.

So we were just, like,
"That's dodge, though, right?"

And he was, like, "Well, it's legal,
but no-one is doing it."

As soon as someone says no-one's
doing it and it's a little bit

naughty and a little bit dodge,
of course I'm, like, "Yeah,

"I'm up for that. Where do I sign?"

Several doctors
and people in high-up places

thought it was
not a sensible thing to do.

Generally, when they said that,

they'd get a very angry response
saying,

"Well, why the fuck are
the NHS not doing it themselves?

"If they're not going to do it,
fuck the NHS,

"we're going to tell everyone
how to get PrEP."

So you create an evidence review.

There's also
a budget impact assessment.

There's cost effectiveness evidence,
there's the public consultation,

but the budget impact
is one of the most important.

And it was pretty difficult to give
them an estimate of the numbers

that were likely
to come forward for PrEP.

That was really tricky.

And, of course,
it is an expensive drug.

At that time, it was patented.

OK, so you're talking about
a cost of about £400-500 a month

and, at the time,
we were thinking in terms of

about 5,000 people who were
in that really high-risk category,

so that's 20 million a year.

It's about choices.

The NHS pays £80 million a year
to prescribe paracetamol.

Which you can buy
over the counter for 15p.

And yet we were asking for
probably about £20-30 million

for something that will
stop somebody

acquiring a life-changing condition

which, if untreated,
will lead to their death.

But also will have
the economic benefits

of not having to treat somebody
for HIV over their lifetime.

Being diagnosed with HIV
is costly to the NHS.

It costs, on average, £380,000
to provide a lifetime of care

so, by providing
effective HIV prevention,

you're helping that individual

but you're also preventing that cost
to the NHS.

The controversial thing about PrEP

is that you are
considering the risk.

You are intending the risk,
and that's the difficult...

That's the bit that some people
find hard to swallow.

I don't think the NHS can afford
£450 a month to a homosexual

who wants to be able to practise
the sort of sex

he wants to be able to practise.

Cos this is what it's about.

It's about indulging gay men
who don't want to use a condom.

Well, that's outrageous.

Why should the taxpayer
subsidise a reckless sex life

of people in the gay community?

Well, you know, in the real world,

not everyone uses a condom
100% of the time.

Like, you can tell them,
but it's reality.

This does not happen.

PrEP has always been controversial
because we are so wedded to the idea

that the ideal way of
preventing HIV is to behave well.

Like, if you look at
who HIV infects,

it's disproportionately people
who are not white, brown people,

black people, sex workers,
people who inject drugs,

trans-women are disproportionately
affected, as are black Africans -

people who are just on
the circumference of acceptable.

I grew up in Belfast
in Northern Ireland.

I am the oldest of six kids,
and it was the '80s.

And I was very gay.

So it was interesting.

I never really knew a time
that wasn't The Troubles.

I don't know whether that
informed how I lived,

which was hard and fast
and passionately.

But it definitely had
a deep impact on me.

# When I look back upon my life

# It's always with a sense of shame

# I've always been the one... #

I always wanted to get out.

I was always conscious that

there was something else
apart from what I knew.

Everything changed massively
when I moved to London at 25.

I started working in a gay bar.

Within six weeks I went from
this geek kid to being an A-gay.

# It's a sin. #

That was, like, old school,
proper Vauxhall glory days.

Being out every Thursday, Friday,
Saturday, Sunday.

I also started seeing this guy.

And I fell in love with him

in a way I'd never fallen in love
with anyone before.

I guess, when
the relationship ended...

..I went off the rails.

I became destructive.

I was just a real...

I was a mess.

I never, ever, ever had sex...

..without thinking at one point
HIV's in the room with me. Never.

So I managed to get hold of a small
amount of PrEP and the one thing

you definitely have to do
before starting PrEP

is to make sure
you're definitely HIV-negative.

I wasn't really worried

cos I'd tested regularly
for HIV and for STIs.

"Why are you here today?"

I was, like,
"Oh, I wanted a HIV test

"because I managed to get
some PrEP."

And he was, like, "Really? How...
How did you do that?"

And I told him.

He was, like, "Oh, this is amazing.

"I think it's great that you're
looking after your sexual health."

It's really simple, really quick,
painless, really easy.

Either one dot comes up for negative
or two dots comes up for positive.

Literally, boom, like, two dots.

So he didn't even have to say
anything. I saw it before...

Cos it was sitting between us.

INAUDIBLE

It's like time stops,
there and then.

So you see the two dots
and time stops.

And, like, literally,
I could almost hear, like,

someone had put him into,
like, half speed.

INAUDIBLE

Rock star Freddie Mercury is dead.

The lead singer of Queen announced
only two days ago that he had AIDS.

I was, like, seeing people
go past me

and I felt like I was in a bubble.

Like, there was something separating
me from the rest of the world.

But it's still, like, 35 years of

all of those things that you've seen
of what AIDS is and death.

Freddie Mercury and Rock Hudson
and even Princess Diana.

The heritage of my community
suddenly became mine then.

Freddie Mercury said he hoped that
everyone would join him

in the fight against
this terrible disease.

What does it feel like?

Devastating.

Absolutely devastating.

Oh, I cried an ocean.

I sobbed so many nights.

But then I realised,
what's me crying going to do?

He's to live with it.

It's his actions, his consequences.

No-one's perfect and, no matter what
your child brings to your door,

you're always going to
support your child.

No-one could have known
at this point,

but I was already looking at someone
looking at me and thinking,

"Are you looking at me cos
you know?" It was, like, I can't...

I can't second-guess every person
I meet for the rest of my life

and wonder if they know
my big secret, so I was, like,

I'm taking the power out of that.

I'm having that back to me.

You know when you do one thing?

Like, you know that "ding!" moment
that your whole life changes?

Literally, that send on the Facebook
status was actually the moment that

the whole of my life changed.

Oh, my God!
Has he put that on Facebook?

TEXT ALERTS

My phone just lit up.

And I just sat on those steps

and read all of these messages.

And then started to get, like,
really overwhelmed.

First of all, people were, like,
"I can't believe you've done that."

And then a lot of people were, like,
"Well, what is this PrEP stuff?

"And why would PrEP have kept you
HIV-negative?"

So I could tell people what PrEP was
and I can tell people how it works

and I can tell people that it
definitely keeps them negative

and then, obviously,
the next question is,

"Well, how do I get PrEP?"

Gay guys have the right
to fear-free,

guilt-free, disease-free sex.

And there always has to be
something wrong.

Like, I have to pay the price
for being gay somewhere.

I'm going to get HIV
or I'm going to get this STI,

or this is going to happen,
or that's going to happen,

or I have to put a condom on it.

We are ultimately conditioned
to believe that love,

and particularly sex,
between two men

always has to come at a price
when it doesn't.

Then a lot of clarity happened
all at once.

"I can't waste this. Am I throwing
away my HIV-negative status?

"It has to count."

When we started
building the website,

Greg didn't have anywhere to live,

so we'd just build the website
in the evenings in my bedroom.

We'd sit there surrounded by notes
and random bits of information cos

we'd never bloody made one before
and we had no idea how to do it.

First of all, what we're going to do

is get all the information
and things you need to know

and give it to you in a way that
you can understand.

And then we're going to do
the most important bit -

we're going to do a click-to-buy.

This is what it is,
this is how you get it, boom, done.

We didn't want to make
any money ourselves.

We were just linking up
buyers to sellers.

The whole point of the website -

that it was radical and direct,
because we were angry.

The short of it is, I want PrEP now.

That's what I want.

I'm not going to wait for the NHS
to come and save me.

I don't care. I want PrEP now,
and this is how I'm going to get it.

So the website had to be called
IWantPrEPNow.co.uk.

So, we found out about IWantPrEPNow
about 5-7 days

before we launched our own website.

We basically struck up a
gentleman's agreement then and there

that we should work together
as much as we could.

Will and Mark set up Prepster,

raising awareness about PrEP,
and Greg and I set up IWantPrEPNow,

signposting people
to where they could go.

We launched, and we were getting
all, like, two kids at Christmas.

Like, oh, how many people
have visited the website?

Ooh! 300! Oh!

In the first 24 hours,
we got 400 hits or something

when we were expecting about four.

People really jumped at it
straightaway.

In October 2015, we could talk about
PrEP, but we couldn't prescribe it.

And then I became aware of
Prepster and IWantPrEPNow.

I knew what Greg was doing could be
something great, something big.

Mags Portman, the lead consultant
on HIV and sexual health, e-mailed,

asking if she could speak to me.

This is at a time, bear in mind,

when I thought doctors were, like,
special people, like Superman.

Like, that they had special powers.

Mags was, like, "Hey, Greg,
I really like what you're doing,

"I'm doing this thing for this,
and I'd really like to speak to you

"about that, and could we maybe
meet up for a wine after clinic?"

And I'm, like,
"This woman is extra!"

I was, like, no.

She e-mailed back
straightaway again,

"So can I ask you this,
can I ask you that?"

And I was, like, "No, you can't,

"because I don't know, really,
what I'm doing."

When we met, he was very charming.

He was a very passionate individual

who really believed in
what he was doing.

So Mags kind of rolled her
sleeves up and got on board.

She asked how she could help,

and what we needed then
was some visibility

in the right areas
of the medical sector.

Just in case anybody had been to
the moon for the last year,

we know from home-grown data from
the Proud study that daily Truvada

reduced the incidence of HIV by 86%.

Prepster and also IWantPrEPNow

is a site set up by Greg Owen
and his friend,

and they're doing this
really responsibly, basically

providing links to other sites where
people can obtain generic Truvada.

We'd be in a bar or something

and then one person would be, like,
"Oh, YOU made that website?

"Oh, yeah, I think it's totally
fantastic!" And everything.

And this started happening
very slowly.

One of my very good friends,
he was, like,

"Babe, you know I was on, like,
this hook-up app?

"Everyone was on PrEP."

So I logged on
the next bank holiday weekend.

And, like, every four or five
profiles was listed as on PrEP.

And so, for me, that is
an absolutely mind-boggling thing.

Hello. Good evening.
Should a pill to prevent HIV

be handed out free to gay men
before they have sex?

The issue in terms of
PrEP access at the moment

is that it's completely inequitable.

Many gay men buy their PrEP online,
but not everyone can afford to.

The fact that it's not available

to people in England
free of charge is crazy.

It doesn't cut out
other sexually transmitted disease,

the same argument
that might once have been used

about an NHS-funded
female contraceptive pill.

Putting someone on a daily dose of
Truvada costs around £5,000 a year,

so should it be publicly funded?

It's not homophobic
to say to the gay community,

"Take responsibility for yourself."

That's what this is about.

It's not the job
of some bureaucrat in the NHS

or some high-powered,
well-intentioned consultant saying,

"That's what we'll do -
we'll give them the drug

"and that will cause one less
problem for us to worry about."

It is not the job of the NHS
to do that.

They should not take responsibility
for how I conduct myself

in the bedroom, or wherever it is
I choose to have sex.

Our analytics were showing that

site traffic was increasing
exponentially.

Like, it was pretty much exploding.

For some reason, one of the sellers
ran out of drug.

One of the other sellers
wouldn't accept card payments.

I was... I was actually
losing the plot.

Meltdown happened.

I thought, "OK,
I've started something

"and people are relying on this,

"so I need to put in
some safety nets."

I felt like, if I was going to be
an HIV prevention activist,

I had to put my money
where my mouth is.

I'm buying a drug that
I have no clue who the seller is

or where it's coming from.

If IWantPrEPNow discovered a new

and possibly reliable
supplier of PrEP,

I would do a test purchase
with them.

I would then
physically take that drug

and then I would go
and visit Mags Portman

at the Mortimer Market Centre
and we would send off the bloods

for therapeutic
drug monitoring tests.

That was the only way that we had
of checking that the PrEP

people were taking
actually contained the ingredients

that we thought it contained.

And so, overall, we tested
about 300, 350 different samples

and found absolutely no evidence
of any fake preparation

in any of the drug
that was being brought in.

Never in the history
of the NHS had people,

predominantly gay and bisexual men,
went and bought a drug off-line,

bucked the process...

So, they hadn't turned up,
spoken to someone,

been risk-assessed,

met eligibility criteria.

None of that stuff. They were like,
"I'm taking this. Boom."

So, guess what happened.

I ended up running a virtual clinic
for the whole of the UK

on social media. It's about
relationships, it's about feelings,

about social aspects
that need attention,

mental health aspects,
and I love that,

but it's an awful lot
for one person.

And at this point,
I was sleeping on someone's sofa,

and I was so broke that
I didn't even have an Oyster card.

For some people,
this isn't a day job.

Greg's own story was that
he had just become infected with HIV

because he couldn't
get hold of PrEP,

and Greg didn't want
to see that happen to anyone else.

I think that little bit of anger
will always be in me.

Not because I'm angry
that I have HIV.

Just cos I'm angry that

people who could have done something

and people who should have
done something failed me

and many other people like me.

We knew we were working
to a June deadline.

Everything had to get
to CPAG for June.

By late February...

It really, really was meant
to be going to public consultation.

And I sat here
and counted back the days

and realised that the
public consultation needed to start

within the next week
for them to hit that deadline.

And it didn't go out
to public consultation.

We all knew then that
there was something wrong.

PHONE RINGS

We were summoned to a phone call.

It was, I think, an e-mail through
from the United For PrEP group

about the NHS decision.

"Gus, this is between you and me,
but they're going to refuse PrEP."

I mean, I was gobsmacked.

Oh, my goodness.
It was absolutely horrifying.

This is not acceptable.

What was the reason
for this sudden change of mind

just, what is it,
two or three months

before the CPAG decision?

We were told that, actually,
there was an error

and NHS England wasn't
the commissioner for PrEP.

They're going to say that they're
not legally able to recommend it.

I thought, "Bastards."

The process stopped for PrEP
because NHS England said that

its legal advice was that
it was unable to commission PrEP

because it was
an HIV prevention service

and HIV prevention is now the
responsibility of local authorities.

The rug was completely pulled out
from under us.

And I was just like,
"I can't believe it."

I did literally just
burst into tears.

I was like, "I can't believe this.
This is just insane."

I was so tired and frustrated.

I felt worse about that
than I did about my HIV diagnosis.

I mean, we just didn't know whether

we were ever going to be able
to prescribe PrEP.

Yeah, it was really
quite a big deal, actually.

I think we both cried
and then I put her on a bus home

and went home and drank
another bottle of wine.

I don't know what level
that decision was made.

My view is it was taken
at a very senior level

within NHS England,

certainly not far from
the chief executive's door.

It was from high up
within NHS England,

but quite who initiated it

is something that I think
still isn't entirely clear.

It was only when it really went up
to ministerial level

that people started
being really honest.

"Well, OK, yes, it is about
the costs, but it's also about..."

And Jeremy Hunt,
the health minister,

is recorded as saying this about

"whether I can get it past
the Daily Mail."

We don't know which person
in NHS England

sought that legal advice.

What I do know,
from my experience in government,

is that you often look for
the advice you require

to actually legitimise a decision
that you want to take.

I'm convinced NHS England panicked

about the potential cost of PrEP

and they looked for
any excuse to resist funding it.

Three letters - NHS.

No more pointless reorganisations
of our National Health Service.

Back in 2012,

the coalition government
pushed through

a new Act of Parliament
that reshaped the NHS.

Modernisation of
the National Health Service

is necessary.
It is in patients' interests.

One of the key changes was that
public health responsibility

moved onto councils,
local authorities,

so they were responsible
for public health measures.

The NHS was responsible
for treatment.

Based on need, not ability to pay.

The reforms really made

the HIV landscape

much more complicated.

Previously, it was very clear that

the NHS was responsible
for all the services.

Because it was now divided up,

it was quite hard to see
who was in charge of this.

Traitor!

The problem being that
local authorities were never given

enough money to run
those public health services.

I mean, the discussion
was always that

this would be something
that would be funded

by NHS England.

We do do some areas of prevention,

but so, too, do the NHS,

and if we then
try to divide that up,

we would be taking on
a vast budget -

an absolutely vast budget -
in a whole range of areas.

The more we looked into it,

the more I realised that, actually,
there's a bigger issue here.

It's not actually about PrEP.

This was about the NHS
trying to cut without cutting.

The NHS in 2016 was facing

one of its biggest financial crises
in its history.

All parts of the NHS were trying
to identify ways of saving money,

so I think, rather than being
a special case,

this was part of
a whole programme of savings

that were being developed
across the NHS.

Once NHS England had got
its legal advice

and said, "We can't fund this,"
there was no way one was going

to be able to settle with them
or bargain with them or anything

because their position was,
quite naturally,

"We are a responsible public body.

"We cannot fund something that we've
been told we have no power to fund."

And that's when
the National AIDS Trust

decided to take them to court.

The decision was so outrageous
and so capable of challenge.

I mean, the fact that a charity
had to take NHS England to court

in order to make sure that PrEP
could be available is shameful.

It became clear that
the battle lines had been drawn

and this was heading for court and
that this was going to be a monster.

You're taking on the Government.

It was a really big decision
and it was terrifying.

There were real risks for us.

We are a small organisation.

We don't have lots of money
in the bank.

It was a David against Goliath
battle.

After the NHS decision,
we all became a lot more focused.

I mean, we were very focused anyway.

Everyone knew,
kind of without too much organising,

how we could literally
just surround it from all areas.

We know that PrEP has the potential
to be a game-changer.

We made sure that
members of Parliament

and members of the House of Lords,

they understood the decision
that NHS England had taken.

My concern about the precedent this
sets for other preventative costs

being shunted onto
local government...

Street activists started to step up
and start taking action.

We knew that PrEP
would not be made available

if there wasn't any demand for it,

and we had to show that
we're demanding PrEP.

PROTESTERS: 17 a day won't go away!

A whole and very important

NHS decision-making process
was paralysed.

All of the new proposals
had to be delayed

because there was
a limited pot of money.

It was all about comparison
and prioritisation.

You couldn't do that without knowing
whether PrEP was in the mix or not.

Suddenly, there was
the Clinical Advisory Group

waiting to make decisions
between this drug and other drugs,

so there was a great urgency
to get the case resolved.

That was incredibly painful for us

because we want
all people with health needs

to be able to access
the drugs that they need.

The answer to the problem was for
NHS England to reverse its decision

and take PrEP to CPAG.

It wasn't for us not to challenge
a fundamental injustice.

My understanding is
NHS England are considering
their commissioning responsibility.

I want them to reach
a decision quickly,

but it's right to raise this...

All we were ever asking for
was for the NHS to consider PrEP

under the same rules that they would
consider any other new medication.

We sent a letter out to The Times.

"Every day that this is delayed,

"at least 17 people
will be infected with HIV."

17 people every day
infected with HIV

whilst this delay was taking place.

I didn't stop to breathe
since my diagnosis,

since launching the website,
for the best part of a year.

I burned out really bad.

He got so overloaded.

24/7, day and night, day and night,
and he wasn't getting paid.

It was voluntary.

I was sending him money
to make sure he was eating.

He was physically
and mentally exhausted.

The online access of PrEP through
IWantPrEPNow was amazing.

No-one would claim that
that is the ultimate,

appropriate provision of PrEP
to address the HIV epidemic.

It was one of the most dramatic days
I've had in court.

I'll never forget it.

There was a sense of excitement
and that this was

a really key and important decision
that was being made.

It was nerve-racking.

Like, the whole process
was incredibly nerve-racking.

The judge was really,
really great, actually,

and from the moment
that he came into the court,

the thing that we'd been
most worried about

is that it was so complex.

The laws and regulations surrounding
the NHS powers and NHS duties

are incredibly complicated.

But, actually, he understood it all.
He had clearly read everything.

He was immediately like,
"I have these questions."

One of the arguments that
the NHS was making is that

it couldn't fund PrEP
because it's prevention

and the NHS can't fund prevention.

And that felt ridiculous to us.

They clearly do fund prevention
in lots of different ways.

Outside of HIV, you can look at,

you know, things they've funded,
like Healthy Cities,

or you can look at statins.

But even within HIV, they fund PEP,
which is the drug that you can take

if you've been at risk
of contracting HIV

for a short period of time
to stop you from getting it.

If someone has a needle-stick injury
or has an exposure to HIV

through a sexual encounter,
you then go along afterwards

and you get post-exposure
prophylaxis treatment.

Now, that operates
in exactly the same way as PrEP.

It's not a perfect analogy,

but you can think about PrEP
as being a bit like the pill,

PEP being a bit like
the morning-after pill.

The drugs are the same drugs,

so that's also a prevention tool,
so it felt illogical to us.

PrEP's not even about preventing.
It may be taken preventively,

but in order for it
to actually prevent HIV,

someone has to have HIV,

and that was deep within
the science of it,

and I'm not sure anyone
had really appreciated that.

Truly, actually,
it's a treatment of somebody

that has just contracted HIV
that prevents it from taking hold.

The clear blue line
that the NHS was trying to divide

between these different things
just doesn't exist.

The NHS's whole strategy
is based about prevention

because everyone knows it's better
than cure, so it didn't make sense.

So, the case was about
far more than just PrEP.

You have to look at the purpose
of the NHS, really.

The purpose of the NHS
is to treat and prevent disease.

Interpreting the law in a way that

stops them providing
preventative treatment

just does not make sense. You have
to look at why they are there.

And then it finished
and all we could do is wait.

There is a gap between
believing in your case

and knowing that
you're going to win.

A High Court judge
is set to rule today

on whether a drug which prevents
people being infected with HIV

should be funded
by the NHS in England.

People poised over their phones
to send their tweets.

They had drafts ready
for win or lose.

Let's go back now to the news that's
broken in the last few minutes.

The High Court has ruled that
a drug that can prevent HIV

can be funded by the NHS.

Well, I think it's very,
very significant.

Mr Justice Green, the judge,

has ruled in favour of
the National AIDS Trust,

which brought this case
to the High Courts here...

The judge found unequivocally
in our favour.

It was an incredibly strong
judgment.

It was clear that
he'd understood the arguments.

I think we felt really kind of heard

and understood
and obviously delighted.

The NHS in England
has been told by the High Court

that it can fund the drug.

The case was nothing to do with
whether it was a good drug.

That simply didn't enter into it.

The question was, did they have
the power to fund it?

If they did, then everyone agreed

they had to go away and decide
whether they should fund it.

The court rejected
the Health Service's...

I take my hat off
to Debbie and Yusef and NAT.

They did an incredible job.
But, lo and behold, NHS England,

straight on the back of the
announcement, appealed the decision.

NHS England says
it'll appeal against

today's High Court ruling,
and even if that fails,

it's under no obligation
to fund the drug

or do anything more than consider
its cost-effectiveness,

alongside treatments
for other health conditions.

It was difficult because
we were so pleased that we'd won,

it had taken such a lot of work
and energy to get to that point,

and then we knew
we had to do it again.

They released a press statement

where they said
the decision had been taken

for men who have high risk,
condomless sex

with multiple sexual partners.

It was condemnatory.

It just felt... That felt
really vicious, actually.

It felt like sour grapes.
Who knows where it came from?

But the fact that
that homophobic comment

emerged somehow
from within NHS England

was an extraordinary example
of an institution just lashing out.

As soon as you set the tone,
what did they expect?

An official press release!
Where did they expect it to go?

Yes, it became fair game,

and we started to see headlines

we hadn't seen the likes of

since back in the days of AIDS.

I woke up the next morning
to two headlines,

one from the Daily Mail
and one from The Times.

It felt like a really massive
smack in the teeth.

The newspapers like the Daily Mail
were once again

peddling this idea that

our health and our rights

are somehow less than
other people's rights.

PrEP, subject to the appeal,

will be seen and considered
alongside 13 other treatments,

including treatments for
children with cystic fibrosis,

prosthetic limb loss and
certain types of auditory implants.

The NHS's publicity on the issue
sought to offset PrEP

against cancer treatment
for children -

emotive stuff like that.

"Why should we spend money on PrEP
rather than people with cancer?"

And so it was pitting
one patient group

against another patient group.

ON RADIO: The people that want PrEP,
they just want to cop out.

The National Health Service needs to
prioritise more important illnesses.

The Government has completely
abdicated its responsibility.

And this is a sort of moral dilemma,

when you have a finite budget
and almost infinite demands.

People make mistakes.
People get carried away.

It can be that people are in
a bullying relationship.

I am absolutely horrified. Mm-hm.

These people, they decide whether
they're going to be promiscuous

or whether they're going
to be sensible about it.

They just think of themselves
and nobody else.

"Why don't these gay men just
use condoms or just don't have sex?

"Why should we give
a preventative pill, you know,

"that's going to cost us money,

"when condoms are cheaper
and are easily accessible?"

So, you can argue, you know,

in the same way
about the contraceptive pill

or about, you know,
treatment for skin cancer.

A whole range of
preventable illnesses

that we face on a daily basis
in our country.

There's funding, there's money,

there's resources put aside
to fund that.

It will really stick in the craw

of somebody waiting
for a potential operation,

for a wheelchair,

somebody stuck on
a hospital trolley,

to know that,
"Oh, it's all right, though.

"All the money's being spent
on those gay guys

"so they can go and have
wild sex parties."

It will get more and more lurid,
the coverage of this drug,

which is why, I think, it's not
in the interests of my community

to go down this route - because
it will cause more resentment

and more irritation,
with some justification.

Gay men are not going into
children's wards

and stealing money
or drugs from them.

That's not how it's happening.

PrEP is not about sluttiness,

promiscuity, carelessness.
It's actually the opposite.

It's about people caring about
their health and others'.

It should be available
to anybody who's at risk of HIV.

Like, 6,500, 6,000 people
a year back then

were diagnosed with HIV,
and NHS England stalled.

I was like, "You know,
we're into, like, thousands

"needlessly contracted a virus,

"and now we're living
with a condition

"that's going to cost you £350,000,
over a lifetime, of care.

"That's cost to you,
like, NHS England."

But the human cost... Like,
you have something that works,

that stops people getting
this highly stigmatising,

what can be a life-ending condition
for some people.

You have something that will
keep them safe and keep them healthy

and you won't make it available

because some lives don't matter
as much as others.

The evidence on how
NHS England made its decisions

showed that it was going through
all the processes,

and social values or lifestyle
is not part of their criteria.

It's interesting, this question
of personal responsibility

and what role it plays
in the NHS's decisions.

Officially, it doesn't play
any role at all.

Unofficially,
you can see it playing a role.

The way PrEP was dealt with
seems to me is an example

where you become so fixated

on the need not to spend money
that you forget

that, you know,
there are people out there,

people who could benefit from PrEP,

who have really been put
at a disadvantage.

And the whole way it was dealt with
was very distasteful.

Ultimately, these difficult choices
have to be made

and it doesn't matter
how much money you put into the NHS,

those choices will still be there.

Obviously, we'd won the case below.
We'd succeeded at first instance,

so that's always a good position
to start from.

You're defending a judgment.

Part of the problem was
the way that we'd won it.

One of the grounds on which
he'd found in their favour

was something quite difficult
to defend, we thought.

And it was, I think,
the finding which gave NHS England

such concerns about the judgment

that they really felt
they had to appeal.

They were particularly concerned
by an interpretation

of the dividing line between
the duties of NHS England

and the Secretary of State
and local authorities -

a three-way division
which gave NHS England

very wide powers of responsibility,

which they were worried had much
wider implications beyond this case.

When the appeal came through,
I was in Belfast,

and I was working a bar job.

Literally,
as the announcement was made,

I had my phone in a pint glass
next to the till,

and my phone, again, blasted.

It was like a firework.

It just kept going
and going and going.

The result was that
we won the second time,

which was even more incredible.

And I actually was literally crying.

Serving pints of beer
to this poor Belfast boy,

who probably thought
I was absolutely off my rocker.

Our National Health Service,
it's a health service.

It's not a sickness service.

It's about helping some of
the sickest people in society.

It's also about encouraging us
to live healthier lifestyles,

and when a medicine or a tablet
can help prevent future disease,

we should use it
and the NHS should embrace it.

They shouldn't have appealed.
The amount of money they've wasted

on the original case
and on the appeal

could have been used
for front-line services.

We're absolutely delighted to have
been vindicated a second time,

and it couldn't be any clearer

that NHS England has the power
to commission PrEP.

And at a time when 17 people a day
are acquiring HIV,

we really urge them now
to just move forward.

REPORTER: Reacting to
the court's judgment,

NHS England said
it will now formally consider

whether to fund PrEP,
and where patients might get it.

It also said...

If NHS are stalling because
they want to get to the point

where the drug comes off patent,
will be sold as a generic drug,

and they hope much cheaper,
it's a terrible precedent.

It means many thousands of patients

are going to be deprived
of the latest developments.

I hope NHS England,
when they lost the case,

and then when they lost the appeal,
hung their heads in shame.

ON RADIO: Figures released yesterday
show a 21% reduction

in new HIV diagnoses in the UK.

The number of newly diagnosed cases
in London is falling.

Four of the biggest clinics say
they've seen a 40% to 50% drop

in new cases since 2015.

"I've just seen this tweet
from Dean Street clinic -

"that they saw a 45% decline
in HIV infections last year.

"Can that really be true?"

Yes. We were as surprised as anyone.

But as of last April...

..we started seeing fewer
and fewer infections every month.

This was absolutely extraordinary.

From 2015 to 2016,
for the first time,

there was a decrease in new
HIV diagnoses amongst gay men

of around 20%.

But in certain clinics in London,
that decrease was 40%.

It was immensely exciting to see,
really, what PrEP could do.

And I think we probably had
already done as much as

we possibly could
in the way of frequent testing

and early diagnosis
and early treatment,

and the piece that was missing
was the HIV-negative individuals

who were catching HIV
in between their HIV tests,

and that's where PrEP
fills that gap.

That was the first moment
when we, like,

were able to take a step back
and actually be quite shocked

at how effective all of this was.

In the HIV history of the UK,

I think this is
a hugely significant point.

Sheena called me that year,
just before Christmas,

and she said, "Oh,
I just wanted to give you a call

"to say Happy Christmas
and thank you for all the work
that you've done."

And I was talking to Greg about this
and saying, "I just...

"I don't believe it.
It's absolutely incredible.

"And, you know, you can take credit
for this because, you know,

"without your website and
pointing people in the direction

"of where they could buy their PrEP,

"then we would have had tiny,
tiny numbers on PrEP."

I was like, "Oh, that's..."

Praise is uncomfortable for me,
and when Sheena says it,

it's like the Queen Sheen of PrEP.

So, you sort of go...

So, I don't think she knows,
but I did start to cry.

But Sheena was like,
"I want you to strip it back,
think about the people.

"Like, there are thousands of people

"walking around now HIV-negative
because of something that you did."

PrEP offers us
the realistic prospect

of eliminating HIV
within the next decade or so.

HIV, in a way,
has been a distraction.

A war, as they say.

And now we have
to deal with peace time.

On a personal level,
I mean, I think, for me,

I feel like I've done
something good with my life.

Being part of this,

I know that I have made a difference
to people's lives,

and that's a massive thing
to be able to say.

Yeah. So, I'm thankful for that.

I had a humble objective.

I had a really basic objective,
which was I just want one person

to remain HIV-negative
on the back of my diagnosis.

That way, it's HIV equal.

And if we prevent one -
a second person - then I won.

My HIV status didn't cost anything.

How much do you know about HIV?

What's true and what's false?

Take the Open University quiz

to find out more
and test your knowledge.

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