From Stigma to Hope

Archive ID: 2011_from_stigma_to_hope_hsph_edited

Staffan Hildebrand looks back on his 25 years of documenting the HIV and AIDS epidemic for the Face of AIDS Film Archive. The film portrays a shift from pessimism towards a growing optimism in the response to HIV and AIDS.

Background material

"The film depicts an optimistic period, but as the Dean of Harvard School of Public Health, Julio Frenk, says in the film, HIV/AIDS must be kept high up on the global political agenda, in spite of other competing health issues also demanding resources.  Dean Frenk also talks about the possibility of even ending HIV in a foreseeable future, provided the funding and good work continues.  Harvard School of Health AIDS expert Dr Richard Marlink, says in the film that in order to end HIV, we actually also need to eliminate stigma and discrimination attached to the disease. He also reminds us that one third of all the people living with HIV and are in need of ARV treatment today do not yet get access to free treatment, so there is a lot more to be done." - Staffan Hildebrand

Interview with Staffan Hildebrand in August 2015. Duration 7.21 min


In the spring of 1988, I
embarked on a long journey

into the world of HIV and AIDS.
Sydney, Australia, where
we shot these images,

was the first destination.
I met and interviewed
a dying AIDS patient

for the first time in my life.

Please tell me your name.
My name is Lyle Taylor.

You are dying of AIDS right now.
Can you tell me
about your situation?


I discovered that I was antibody
positive four years ago.

Today, through sort of
circumstances yesterday

and today, and through
physical symptoms,

I thought I was dying.
But I can't find the
switch to switch life off.

Good afternoon.
Good to see you.
Good to see you,
Professor Dwyer.

Have you had a good morning?
I've had an interesting.
Well, that's very good.
This patient is close to dying.
He's very close to dying.
He knows that.
We know that.
I just don't die.
But he just is hanging in there.
In his bravery, he is
renewing our determination

to come to grips with
this thing and to see

if we can find answers so that
in future, people like Lyle

will not have to go
through this suffering,

because there is an enormous
amount of suffering involved

that he's being
very brave about.

AIDS spread very rapidly in
the homosexual community.

It is not a homosexual
disease, and it will be slower

in the heterosexual community.
But if they don't do something
about it, that's their problem.

Later on the same day
as I did the interview,

Dr. Dwyer called my
hotel room in Sydney.

He told me that
Lyle Taylor had died

10 hours after I filmed him.
The interview was
his last contribution

as an AIDS activist.
To meet and film Lyle Taylor
had a big impact on me,

both as a person
and as a filmmaker.

These are images which I shot
20 years later in the spring

of 2008 in the Kiambiu slum
community outside Nairobi,

Kenya, a country in the
epicenter of the AIDS epidemic.

Free access to
antiretroviral treatment,

ARV, did dramatically change
the face of AIDS epidemic

for countries like Kenya.
My name's Skytt Nzambu.
And I live in the Nairobi
city slums of [INAUDIBLE].

I got HIV from my husband.
I thought, enough is enough.
I left him, and I
went with my children.

How are you today?
Can you tell a little about
it when you had self stigma,

and how you overcome it?
I can say it was self stigma
which was drugging me even

to think of killing myself.
And when I got a
lot of counseling,

I came out of the stigma.
And I like empowering women
and people in general,

people living with HIV
and AIDS, to come out

of that cocoon of stigmatizing
themself and live positively.

One of my duties is counseling
children who are HIV positive

and also those
who are vulnerable

and also [INAUDIBLE] orphan
to help them and come out

of their problem and feel
that they [INAUDIBLE] for them

who can love them and
give them support.

Come have a seat, my dear.
[INAUDIBLE] You have
to be strong, eh?

Even if your mother is not
there, we are here for you, OK?

In case of any
problem, we'll give you

support as much as we can, OK?

30 years into the epidemic.
You are a young age activist.
You're a student at Harvard.
Why are you involved?
Well mainly because
of the indifference

I see all around me and
around the student body

here at Harvard, around the
gay community here in Boston.

The difference is there
that wasn't there before.

There were people in the streets
teaching each other about safe

sex and helping to
prevent a disease that

was killing people.
Now that people can live with
the disease and take a pill,

I think people are
forgetting that we need

to continue that communication.
This you see in 1988
is really the peak

of the activism, the AIDS
activism in New York.

And they tried many new
ways of touching people,

influencing the
government and policy.

And they became known
all over the world.

And they affected me.
So I went to New York to film
the ACT UP demonstrations

in April 1988-
We must listen to the pain
and the sorrow and the deaths,

and we must say to the
people, it is not just

your problem or your problem.
It is everybody's
problem in the city.

So filmmakers, people think,
can separate themselves

because they're behind a camera.
Did you feel separated
from the movement,

or did you feel part of it?
I felt part of the
movement because you

go to all these AIDS events
and AIDS conferences,

you meet all the people.
It's like a big family.
So I felt a part of the
family and still feel

part of the family.
And the amazing thing is
that there are many people

that I met in the late
'80s that are still

active in the fight
against HIV and AIDS.


You're going to have
days where it's pain,

and other days where
it's just more pain.

And maybe some days where
it's a good day where

you can walk four blocks
to go grocery shopping.

But that's it.
And at my age, I
shouldn't be here.

When you see the patients
talking about their pain

and suffering,
what do you think?

One of the many things
that's often forgotten today

is how terrible
this disease was.

Patients that couldn't lift
their arms from the bed.

Patients that became
demented and blind.

The horrible nature
of the disease

is something that's
often forgotten.

The response in San
Francisco, the inclusion

of the gay community
and their organizations

with the medical community
and the public health

and political community,
it happened here

in a way that probably didn't
happen anywhere else, at least

not as soon.
So this was really a
model for the world.

When I embarked on my first
long global journey in 1988

to film the human
story of HIV and AIDS,

the epidemic was out of control.
Are you afraid of AIDS?
Yes, we are.
Very much so.
A lot has to do with drug
use, intravenous use.

And these type of people
we come across every day.

I didn't go out there, going
out with different men.

I had a husband to start with.
I didn't use drugs.
I didn't need any kind
of life to get AIDS.

And here I have the virus.

In Pattaya, I think
also about AIDS.

I scared also.
But what can I do?
Only two options left in
order to prevent AIDS.

You must use the condom.
Because that's a very
preventive measure.

Second, you must be able
to have only one partner

and stick to that partner.
I've been in the IV
drug using scene here

for about three or four years.
Subsequently, I borrowed
the wrong syringe

off the wrong person, and I
gave myself a dose of AIDS.


Depending on the
patient, you have

to explain about life,
hope, and letting

the patient have hope all the
time, not just giving out life.

There is no case between
the age of 5 and 14-

Now frankly that age
group can be protected.

So if we can focus
attention in that age group,

then I think there is hope.
We'll have replaced hopelessness
with hope, and fear with facts.

Professor Gallo, what
is the responsibility

of the scientists?
Because here we
have a disease that

has to deal with
prejudice, death, and sex.

Our responsibility is to try
to answer scientific issues,

to try to address the problem
in the laboratory, development

of vaccine, development
of better therapy.

How does the virus work?
And then to offer widely
our expertise in the areas

we work for education
of public, for education

of our fellow colleagues.
The situation is
not under control.

Since we have no
vaccine and no cure,

the only way to stop or to slow
down the spreading of the virus

is by education,
information, and as you know,

this is going on
in many countries.

Thank you for attending the
11th International Conference

on AIDS in Vancouver.
Finally, the scientists could
deliver some really good news.

They did it at the
International AIDS Conference

in Vancouver, Canada in 1996-
The antiretroviral
treatment, ARV,

was made official to the public.
ARV changed the course of
the AIDS epidemic forever.

When I went out filming two
years after the Vancouver

conference, I
noticed how the gap

between rich and poor countries
impacted the ARV distribution.

So three years ago, when I
ended up sick in the hospital,

I sort of thought that that
might have been my turn.

Because I had watched
one friend after another

get progressively sick and die.
But I was just very lucky that
I didn't get sick until the time

that I did.
And at that point,
protease inhibitors

were just around the corner.
Your viral load has jumped
up again a little bit

to about 28,000 copies.
About 6 o'clock in the morning,
I get up and take Videx.

Early in the day I'll
take two of the Crixivan,

2 and 1/2 milliliters of-- at
the end of the day, I take--

twice a day I take Combovir,
which is the AZT While you take

that, you have to also take--
sodium levels have gone down,

so I'm taking sodium--

Given the list of
medications that John's on,

he probably-- his
medical care is

running somewhere between
$30,000 and $50,000 here,

I would imagine.
It's something totally out of
reach for most of the world.

I went from New
York to Phnom Penh,

Cambodia with my team,
a dramatic contrast.

Two different worlds, the
developed and the developing

world, one with and one
without ARV treatment.

Oum Sopheap was a young
Cambodian AIDS activist

that I met in Phnom Penh.
I spent a few days with
him, filming with him,

when he visited people
living with HIV and AIDS.

Cambodia was experiencing an
exploding epidemic in 1998-

Through working with AIDS
patients here in Phnom Penh,

especially in a poor community,
made us change a lot the way

we think-- it changed a
lot because we feel really

community people
which a lot of things

that we have to do for them.
When we think about
the inequality

between the rich and the
poor, I feel very angry.

Because in the
rich country, they

spend $25,000 per year
for one AIDS patient.

And here in Phnom Penh, we have
only $10, even less than $10,

for an AIDS patient per year.
So it's not fair to
people here in Phnom Penh.

How was the situation
in the world in 1998

when we filmed this?
The situation was very serious.
I think HIV/AIDS was
a frightening issue.

I think everyone
was scared of HIV.

I think we didn't
know much about it,

and also we didn't have
resource to respond.

And at that time, a very little
support from outside as well.

That's why I feel
a little bit angry.

We don't have much resources.
One important turning point
in the history of HIV and AIDS

was the International
AIDS Conference

in Durban in the year 2000-
Here, AIDS activists,
the medical community,

international organizations,
public health policymakers,

and the pharmaceutical
companies all came together.

The result was a drastically
reduced price for ARV treatment

in the developing world.

Thanks to thousands of AIDS
activists like Oum Sopheap,

the face of the
Cambodian AIDS epidemic

did change dramatically.
Today, in 2011,
Cambodia is regarded

as a success story in the
Asian response to HIV and AIDS.

New infections are
decreasing every year,

and 90% of those in need
receive free ARV treatment.

Like in many countries,
Cambodia's response

to HIV and AIDS has helped
pave the way for public health

in the country.

A new local public
health infrastructure

has been developed
in Cambodia in order

to monitor and support people
living with HIV and AIDS who

receive ARV treatment.

At the same time, the
Cambodian AIDS response

has targeted injecting drug
users with outreach, education,

and information campaigns
like this one in Phnom Penh.

And here, a new
methadone program,

which we filmed in Phnom
Penh in November 2011-

At the clinic, the
injecting heroin users

regularly get a
dose of methadone.

And they are followed up
by counseling sessions

with each person.

Here, images from
an outreach project

targeting young male sex
workers in Phnom Penh.

Also in those groups,
new infections

are going down every year.

When I met Oum Sopheap
for the first time,

he was a young AIDS activist.
Today, he is leader of
Cambodia's largest NGO focusing

He still makes visits
to the AIDS frontline.

What are you doing here today?
I just come out here to
check out home care team.

On day to day basis,
they come every day,

go out and visit
patients at home.

And so once in a
while, I just want

to come out and see
how thing works here

and try to support them
sometimes on the spot.

This patient, one years
ago before the home care

team met him, he was dying and
desperate and looking for help.

And fortunately,
the home care team

found him, found him here and
referred him to the hospital.

He got the treatment right away.
And now, a year
later, he can walk.

I think a lot of
improvement in his health.

Stigma I think a lot
have changed in this too.

It used to be very difficult
for the home care team

to come out to the community
and visit the patient at home.

People didn't talk any
good thing about AIDS

at all at that time.
But now it's very open.
Everyone knows,
and everyone just

thinks it's just
a chronic disease.

And we have specific treatment
for them, and they can help.

So everyone know, and
the home care team

is smiling with the patient,
and the patient is welcoming

them to come to their place.
Now it's OK.
I think with treatment, people
can get many other things

after they get
their health back.

You think we can end AIDS?
I hope so.
I think if we work together,
I think rich and poor work

together, community, patient,
government, donors, all work

together, I think we can
end AIDS maybe in 20 years.

The International
AIDS Conferences

play an important role in
getting committed people

from all over the world
together, promoting

the global AIDS response
and universal access to ARV.

These images are from the
latest one in Vienna, Austria

in July 2010-
AIDS and stigma was an important
highlight at that conference.

What is stigma?
I guess stigma is the
discrimination often

that is associated with living
with HIV that isn't actually

rooted in any fact,
any science, but more

in the psychological aversion
to people living with HIV.

One thing we've learned over
30 years from this epidemic

is that the most powerful
deterrent to fighting AIDS

is the stigma and
discrimination that it

carries throughout the world.
So unless we can end
stigma and discrimination,

we will never see the
end of this epidemic.

We will never be able
to fight it effectively.

My name is Gracia Violeta.
I am from La Paz.
This is my city,
the city of La Paz.

In Bolivia, when I
was 23 years old,

I discovered that
I am HIV positive.

And I began a fight for
access to treatment in Bolivia

together with some colleagues
in the time in which people

were actually dying every
week because of HIV and AIDS.

I was one night coming
back home at 3-00 AM drunk,

and I decided to
have a shortcut.

But in that corner,
suddenly from nowhere,

two men appeared, one on
front and one behind me.

They took me to the
end of this alley.

And in the end of that
alley, they both raped me.

By that time, I didn't
know I was at risk of HIV.

But I knew that rape
situation changed me forever.

Now that I have
studied the issue,

the connections between
violence against women and HIV,

I can tell you that's so evident
that we cannot avoid working

on that.
And especially in
countries like Bolivia

and regions like Latin
America, you really

have to link those two issues,
violence against women and HIV

and AIDS.

Right now we are in Trinidad.
This is a small city in Bolivia.
The stigma and discrimination
in these cities are very strong.

So there is a need for me
to come from other city

and help raise an awareness
against the stigma

and discrimination.
Metro TeenAIDS is
a youth-led network

in Washington, DC focusing
on reaching out and educating

young people about
HIV/AIDS and safe sex.

That's good.
I do this because I feel
it's a need in the population

because a lot of people are
ignorant about HIV and AIDS.

And even if they
do know some facts,

they probably don't know all.
Heterosexual, gay,
bisexual, or other.

Are you straight?
I'm straight.
All right.
Young people can teach adults
so much about HIV and AIDS.

Just by-- if adults would
just stop and listen to them,

they can teach us so much
about protecting ourselves,

about decision making, about
how to handle peer pressure.

This is a part of
Philadelphia public housing.

This is Westpark.
Actually, I grew up in this
building right over here.

But it is in one of
the zip codes that

are disproportionately affected
by HIV, which is 19104-

Why is the infection
rate so high here?

It's poverty.
And whenever there's
poverty, you're

going to see people
disproportionately affected

by a lot of different things.
It's unemployment, it's
teen pregnancy, it's HIV,

it's hepatitis C, it's
cardiovascular disease,

it's hunger.
And a lot of those issues
unfortunately follow the poor.

And this is one of those areas.

The epidemic in America is
clearly a black disease.

Black people in the US
represent 10% to 12%

of the US population.
And yet we are now nearly 50%
of the 1-2 million Americans

living with HIV today.
Stigma has been an
incredibly big barrier

in responding to
the AIDS epidemic

throughout the history
of the epidemic.

And stigma continues
to play a role

in preventing the development
of appropriate response

to the AIDS epidemic.
This is the Sayre Health Center
in Philadelphia, Pennsylvania,

part of Sayre High
School, and they

offer primary care and
women's health services here.

And we're having a
community health day,

and they're offering
free HIV testing.

And it's free to the community.
Come on and have a seat.

All right.
So have you ever
had a test before?

Yes, I have.
So what we're going to
do is a quick mouth swab.

I'm going to ask you some
questions that I ask everybody.

I'm going to get all
in your business.

But just to kind of
prepare you for that.


Why are you involved in this?
Because I believe that it's
a for us, by us solution.

This is primarily affecting
the black community,

and I feel like the black
community needs to step up

to be able to deal with it.
So I have a personal
stake in it.

I have to tell women
that look like me,

that look like my mother,
that look like my sister,

that they're infected with a
disease that's preventable.

And I want to do
something about it.

So are you ready
for your results?

Yes, I am.
And here they are,
and you are negative.

Very good.
And we want you
to stay that way.

We have some condoms
available out front and some--

Really, we have to make sure
that no matter who you are,

no matter where you are in black
America, that you are engaged.

And if we're
successful in building

that kind of integration of
HIV in where black people live,

work, and play, we
then have a chance

of changing the cultural norms.
And at the end of
the day, that's

what it will take to end the
AIDS epidemic in America,

our ability to change
the cultural realities

and cultural norms
in our communities.


The first stages
of a person living

with HIV/AIDS who just
starts medication,

this is the time when these
people need encouragement.

If we are there to give
assistance or care,

these people continue
with their medication.

Stigma is difficult to handle.
There are different
types of stigma.

And one of the stigmas which
people don't talk about, again,

is NGOs, or organization in
the fight against HIV and AIDS.

They are seen as people
making money out of AIDS.

So when you tell
people, for example, I'm

working for this
organization, the first thing

which comes into their
mind is, oh, you guys

are the ones making money.
I think that
frustrates the efforts

in the fight against
the pandemic.

Then also there's a
stigma for the people.

If, for example-- I mean,
we are living in a society

where a lot of people
have no information,

and then few people
have the information.

From the time I started
experiencing stigma

from my family members,

means to educate them.
And this was also
through my work

with the network of
people with HIV and AIDS.

The education I've shared
with my family members.

I've come to accept, and
they accept me up to now.

In South Africa, more
than 5 million people

are living with HIV and AIDS.
It's the hardest hit
country in the world.

But also, a response has
emerged stronger and stronger.

Treatment Action
Campaign, TAC, is

one of the most respected and
important AIDS organizations

in the world.
It started in Cape Town.
My name is Caroline, and I
work for the Treatment Action

And today we are
going to see one

of our door-to-door
campaigns in Khayelitsha,

a township in South Africa.

My name is Lihle Dlamini.
I'm the Deputy General Secretary
of the Treatment Action

The biggest political
challenges now for TAC

is funding for HIV work.
We find that many
funders are pulling away

from funding HIV and AIDS work.
And it's really
getting difficult

for civil society organizations
or organizations working

in the HIV and AIDS field.
And we know that that
is very important

because we are able to reach
communities where government

is not able really to reach.
We do door-to-door
educating people.

So we are here at
[INAUDIBLE] house.

[INAUDIBLE] has been a victim
of being discriminated against

and being stigmatized
by one of her neighbors.

So we just want to find out
what her whole experience was

around that.
What she's saying is that
she was discriminated

against by one her neighbors
that cursed her out

in front of everyone by saying
that she is HIV positive.

I started losing weight.
Obviously, she was
stressing about it.

And she had nightmares.
Even when she's
sleeping, she would

have nightmares about the trauma
that this neighbor of hers

is putting her under.
If the funders continue to
pull out, the end result in HIV

would be that people will
not be educated about HIV

and how they tend to
take care of their lives.

We'll see people dying from
AIDS-related illnesses.

We'll see people die from
TB, which Global Fund is also

Therefore it means we're
back to square one,

where people die because
of AIDS-related illnesses.

Are you afraid that the
funding to HIV and AIDS

from the developed
countries will go down?

Yeah, I think I'm
very much concerned

about that too because
having heard a lot of story

about the funding for the future
program, I think not just me.

I think the patient, the home
care team, the community,

they are also concerned
about that too.

Because our government do
not have resources to support

the program for a longer term.
What we try to do to bring
the cost down a little bit,

and at the same time advocate
to donor, to rich country,

developed country, to
continue their commitment,

their funding, so that we can
get AIDS free generation maybe

in 20 years from now.
When you think about the
epidemic in a global way,

that you've got to involve
countries to take ownership

of their problem.
You can partner with them.
You can assist them.
But you have to do that
in a partnership way.

So that it isn't as if
you're giving them something

and that's it.
They've got to partner
with you to take

ownership of the problem
in their own country.

How do you look
on the future now?

Well, I think the future in my
mind is optimistic in my mind.

We have scientific
advances that are clearly

showing that the things that
we want to implement work.

So unlike years ago
when we weren't sure

what you can do to put
an end to this pandemic,

we absolutely know now
what we can do to do that.

We just need to implement it.
It is absolutely crucial
that we do not become

victims of our own success.
I mean, the story
of AIDS, until now,

is a story of
enormous challenges,

but also huge successes.
The worst thing that could
happen is to become complacent.

There's now a
commitment to millions

of people who are dependent
on treatment to continue

to be alive and be productive
members of the global society.

That commitment has
to be sustained.

But it has to be
sustained in a way that

allows for future needs and
requirements to also be met.

We need to understand that we
are actually a huge movement

that has tremendous power.
And we need to harness that
power very well in order

to make sure that
the issue of HIV/AIDS

does not just simply disappear
off the focus, off the agenda,

off the table.
I think that the battle
against HIV will be won.

And young people are our hope.
They are the soldiers.
We have to start educating them.
If we have a young
generation which

understand the disease, which
are keen to win the battle,

then I think that's
the direction to go.



25 years ago, I embarked
on a long journey

documenting the human
story of HIV and AIDS.

During this journey,
I have learned

that it is very important
to reflect upon and try

to understand the
history of the epidemic.

In these times of economic
crises in the world,

it is extremely important
to keep HIV and AIDS high up

on the political agenda.
I myself will do my part.
I will continue my long journey
documenting the human story

of HIV and AIDS.