Journalist, Author, AIDS activist, Community Educator,
Mother Jones Online 7/13/04
In her new book, journalist and activist Anne-Christine
d’Adesky argues that access to AIDS medicine is a fundamental
human rights issue.
Interviewed By Peter Meredith
July 13, 2004
has been reporting from the front lines of the global AIDS
epidemic since before it became a major story. A foreign correspondent
stationed in Haiti in 1984, she began writing about HIV when
it was still "something whispered about." Returning
to the United States, she continued covering global AIDS and
politics for the Washington Post, Los Angeles Times, The Nation,
The Advocate, and OUT, where she was editor for AIDS, health,
"Moving Mountains," her second
book, examines the challenges of providing treatment to the
40 million HIV-positive people worldwide. The book compiles
dispatches from developing nations whose treatment programs
have met with mixed success. D’Adesky begins with Brazil,
where domestically made generic HIV drugs and universal health
care have made the country a model for treating AIDS. She
discusses innovative programs—such as Haiti’s
accompagnateurs, lay caregivers who counsel rural HIV patients
and help them adhere to their treatments—as well as
barriers to treatment. D’Adesky assails regulations
that discourage production of generic drugs, arguing that
access to AIDS medicine is a human rights issue.
D’Adesky regards herself as both a journalist and
activist. She recently founded WE-ACT (Women’s Equity
in Access to Care and Treatment), an organization that treats
HIV-positive Rwandan women. She just finished the documentary "PILLS, PROFITS, PROTEST: CHRONICLE
OF THE GLOBAL AIDS MOVEMENT" a “companion"
to her book that examines the need for global access to HIV
medicines. At this week’s International AIDS Conference
in Bangkok, she will lead a panel on HIV treatment that includes
activists and the head of the World Health Organization’s
caught up with d’Adesky in New York during her book
tour to discuss victories and challenges in treating AIDS
You write that it’s important to view access to HIV
medicines through the lens of human rights and social justice,
rather than security or economics. Why?
I look at it as a human rights issue because, in the U.S.
or anywhere else, it’s a disease that effects people
who are poor, and the service that people who are poor get
in most countries is from the public health system. The problem
we have is that, because medicine continues to be treated
as a commodity, AIDS has been dealt with in the U.S. as something
that would be resolved by a market-based system. And that
really doesn’t work in the rest of the world. I feel
that by looking at it as a social justice issue, we can look
at why the epidemic has spread the way it has, but also why
we haven’t been able to access treatment. There’s
an economic system in place that is affecting access to such
a striking degree that we really have to deal with it as a
political and economic crisis if we’re expecting to
get a medical and scientific response that really reflects
the access people need. It’s clear that we could easily
afford to treat everyone who has HIV now many times over,
and it wouldn’t put a dent in the global economic system.
The inequity isn’t a given; it’s something that’s
created and maintained. Looking at the past two years, it’s
clear now that economic policies that reflect the agendas
of the U.S. and some of the G-8 countries are actively blocking
The Bush administration points to Uganda and its “ABC”
[abstinence, be faithful, and condoms “when appropriate”]
model as the blueprint for prevention worldwide. But you criticize
Uganda’s model, particularly regarding its impact on
The bulk of the Bush money has been going to prevention messages
that are essentially pushing abstinence. My concern is that
the women I spoke with in Uganda who are HIV-positive and
are trying to get access to treatment are married women, women
who technically followed the ABCs. They were abstinent until
they were married, and once they were married, of course,
they didn’t use condoms, because the goal for many couples
is to start families and have children. They became HIV-positive
because their husbands were HIV-positive. In some cases, their
husbands knew they were HIV-positive and didn’t tell
their wives. In other cases, they were polygamous. In other
cases there was a lack of education. Across the country, there
has been a lack of testing, so these men didn’t necessarily
know they were HIV-positive. I think that the issue is that
the ABCs don’t work. Regardless of your moral position
on abstinence or condoms, it’s not working for the great
majority of people who are being exposed in many of these
countries. They’re young girls. They’re young
women. They’re exposed at a young age, and they’re
often exposed by older men.
Another dangerous policy is removing condoms from the menu
when you have populations like that of Botswana, where 40
percent of the sexually active adults are already HIV-positive.
I think the Bush policy of removing condoms from the menu
is going to increase HIV infection in communities where you
have very high incidence of HIV already. Again, the people
who are going to be direct targets of that increase are going
to be poor young women who don’t have access to condoms.
The positive sign is that more and more Ugandans who are becoming
involved in prevention and treatment activism are denouncing
these policies and saying that they’re not working for
them. They’re saying that we need to have a strong focus
on the needs of married women. We need to educate them and
we need to make prevention and barrier methods available.
The problem is that the money that’s coming in is very
attractive to governments that need to be able to show that
they’re responding to the AIDS crisis. So, they’re
taking the money and putting forwarding programs that are
not pushing the strategies that we consider to be—or
they have themselves found to be—effective.
What strategies have been found to be effective?
[Effective programs] tend to be prevention messages that are
really targeted to the groups on the front lines. In India
it can be sex workers, or hijras [male-to-female transgender
people], or it can be young, married women. But increasingly,
it feels like those broad prevention messages are not going
to get through. I think Brazil is a good example of targeting
prevention messages and putting them out parallel with treatment.
Treatment can’t happen if you don’t have prevention.
You can’t treat someone unless they get tested. Over
and over again, I’ve found that when you bring in treatment,
you increase the demand for testing.
Treatment is the first step of prevention. In order to treat,
you have to test, so we’re increasing the knowledge
of people who are actually vulnerable. When you offer testing,
you offer education. So, it’s all a package, and we
need to stop separating it. My bottom line message is that
we’re facing a holocaust with 46 million vulnerable
people who we can treat. Those people can become productive.
They can become the army of people who are going to lead us
in our response to this epidemic.
What are your thoughts on Bush’s handling of AIDS globally?
Bush so far has not been making a space for generic drugs.
[The plan] is really being used to deliver brand-name drugs
at what they consider to be discounted prices that are still
unaffordable for the poorest countries. It’s essentially
creating new markets for the pharmaceutical companies. The
point is: does it serve the public’s interest? Does
it serve the interest of people who are HIV-positive? The
concern is that there are very few people getting treatment
at this point. Three years have passed since [Indian generic
drug maker] Cipla made its breakthrough decision to offer
a generic, three-drug cocktail at $300 [a year]. Now the price
has gone down to 38 cents a person for a pill made by a generic
manufacturer. Unfortunately, no one can get them. The issue
is that we’ve lost three to four million people in the
last year while we have these political debates. This is unbelievable.
The reason we’re seeing this is not that people aren’t
willing to make drugs available for Africa; it’s because
it threatens the global patent system.
Would a Democratic administration do any better, or is this
something you’d see under either party?
You know, it would be nice to think that they would, but when
this began, Al Gore was representing big pharma. Clinton did
manage to push through an emergency presidential decree saying,
“we’re not going to get in the way of countries
who want to access generics.” It’s really been
an issue that’s been propelled during the time that
Bush came into power. But the global activist movement had
to fight Gore tooth and nail. The Democrats were defending
the patent system just as much. I think they were shamed,
and that at this point the Democrats would do differently.
But I think that’s because there’s been a huge
paradigm shift. We’ve now shown by having so much media
attention on the issue that we can make these drugs for pennies,
and we can probably make most drugs for pennies. The pharmaceutical
companies have really worked hard to prevent us from knowing
You’re very critical of the makers of HIV medications,
which might seem contradictory for someone who argues for
expanding access to HIV drugs.
Well, I’m also critical of the generic companies. I
mean, these are for-profit systems. The point is that we have
to be very vigilant. It’s very important for people
to realize that we need high-quality drugs at a price that’s
affordable for people in the poorest countries. We need to
subsidize, or find another structure for making those drugs
available. We have to take the most essential drugs out of
the market system when we have an epidemic that is threatening
almost 46 million people. The bottom line is that the actual
market for drugs in Africa represents less than one percent
of the global drug market for the big pharma companies. It’s
not about the money that they’d make it Africa. It’s
that they don’t want any challenge to the patent system.
We need different approaches to this. For medicines we have
to be able to find a system that rewards people who are developing
compounds or doing innovation. We have to distinguish that
from people who then take those innovations and market them,
which is what most big pharma companies do. For most of the
AIDS drugs, they didn’t invent them. They took compounds
that were invented by academic research or small biotechs,
and they invest their money to market them. People are beginning
to say, “if this is developed by academia, that’s
essentially developed with taxpayer money.” There should
be a system put in place where we can give some kind of reward
or payment to a major drug company which invests and does
the testing and the marketing of the drugs.
What would that kind of system look like?
We can come up with systems that reward them for the costs
they may have put into marketing drugs, but at the end of
the day, there has to be an affordable drug that emerges.
If we do that, we can begin to have public–private partnerships
that really allow and support research and development. We
need new drugs. We need new generations of drugs for people
who are going to run out of what they have now. We need malaria
drugs. We need drugs that have been languishing for years
that we’ve never bothered to develop because we didn’t
see a market in the United States and Western Europe. We haven’t
done anything to develop malaria drugs, or drugs for sleeping
sickness and these diseases that are killing the majority
of people in the world, because we didn’t regard it
as something for profit.
But how do you spur research and development without the incentive
I think you have to have new innovation. You have to be able
to have public–private partnerships that focus on research
and development, but take it out of a purely profitable system.
There has to be a bottom line of access to basic global public
health that does provide some subsidy for the investment made
by a big pharma company that comes in to market its drug.
But I think that you can do that. There has to be an acknowledgement
that these drugs are often largely created with taxpayer dollars,
and that is only something that’s become common knowledge
through this effort to get access to AIDS drugs.
In the book, you talk about the “opportunities”
that AIDS presents in terms of developing infrastructure and
fighting other diseases. What do you mean by that?
By bringing in resources for HIV, you immediately have to
talk about other diseases—sexually transmitted diseases,
malaria. You’re providing education for health care
workers and communities, and it’s building an infrastructure
that will impact the overall delivery of health services.
Doing that also provides opportunities for education, and
it spills over into other arenas. It’s what I call “core
development,” and nation-building. It’s a great
opportunity. Everywhere that treatment is being implemented,
you’re seeing an increase in people’s awareness
and overall health. There are also other resources coming
in, so it’s also an opportunity for new partnerships
of the private and public health sectors. In many countries,
the government is really broke, and the private sector has
been leading some of the response. I don’t think it
means you privatize everything [but] you really see opportunities
for where private resources can support public resources.
Do you think there’s one county or program which would
be a good model for others?
I feel that Brazil is a good model, but I think you need to
be careful. Brazil had a left-leaning government. They had
a government that came in having just reversed a dictatorship,
so you had a mobilized civil society. I think the lesson is
that they put forward a demand for health care within the
lens of human rights and civil rights. They took an anti-discrimination
platform and they looked at access to HIV [treatment] as something
that was in tandem with access to health care. They made it
part of a universal health care system. But, they also did
innovative prevention. They really coupled the demand for
health care with a moral responsibility to treat, and they
saw that as the right of every citizen. They didn’t
marginalize HIV. They made it every citizen’s right.
In doing that, they mainstreamed HIV in a way that’s
very intelligent. They haven’t completely reached everyone,
but they’re moving to do similar things with regards
to malaria, tuberculosis, and other diseases using the model
of HIV. The core thing was that they decided they needed to
provide access to generic drugs. They took on the U.S., they
took on the World Trade Organization, and they took on their
own economic leaders, who were very concerned because they
want Brazil to be at the forefront of economic good times.
Brazil has shown that you have to balance and integrate health
needs and look at it with regards to both human rights and
your economic agenda.
What would it take for everyone who needs treatment to get
ACD: On a practical level I think we need to get a lot more
people involved. We need to make people recognize that there
is an active blocking of access to generic and affordable
medicine, and that there are strategies we can put in place
to be able to gain that access. We need to mobilize a lot
of people. We need to make more noise. I think we need to
become less afraid. I think for health officials and people
within the CDC and government, this is the time where they
have to say, “I may be putting myself at risk, but I
need to speak out.” We need to reverse these policies.
What are the biggest barriers right now to increased access
The biggest barrier is the fact that access to generic drugs
are actively being blocked by some of the policies of the
World Trade Organization and by some of bilateral free trade
agreements. We need to vastly increase—using public
and private money—the immediate access of the poorest
countries to high-quality generic medicine, or brand-name
medicine at a generic price. It needs to be coupled with a
massive infusion of condoms and increased resources for treatment
literacy to the front-line communities and governments immediately.
What do you see as the biggest issues facing the delegates
at the International AIDS Conference in Bangkok July 11–16?
Well, I think we’re going to see a push by the Bush
administration to say that it’s making a huge difference.
I think we need to capture that message and look honestly
at what’s happened. There is money coming in, but the
bulk of it has only gone to prevention, and most of that has
been to abstinence programs. So far, very little money has
gone to treatment. We need to talk about some of the economic
policies, like the one with Morocco, where these free trade
agreements are essentially going to make it impossible for
them to access generic medicine, even when they want to. I
think we also really need to look at the models that are showing
themselves to be effective and see if community and grassroots
models are going to be as effective as centralized, trickle-down
models. I think we need to also talk about the responsibility
of African leaders. One on hand, they want treatment. On the
other hand, in places like Congo and Sudan, they’re
waging wars that are vastly increasing the epidemic at the
same time they’re trying to stem it. We need to hold
them accountable, and we need to support those communities
that are trying to say something about this and who are not
in the same position that we in the U.S. are, because there
isn’t the same type of democratic system in place. There’s
an incredible epidemic of rape that’s taking place in
Congo and Sudan right now that threatens to cause another
wave of HIV in that region. In northern Uganda, there’s
an incredible problem on the border, where children are being
exposed at an alarming rate. We’re seeing very little
noise made about that. I think those things need to get talked
about at Bangkok.
Peter Meredith is an editorial fellow at Mother Jones.
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