Moving Mountains
In her new book, journalist and activist Anne-Christine d’Adesky argues
that access to AIDS medicine is a fundamental human rights issue.
Peter Meredith
Mother Jones
July 13 , 2004
Anne-Christine d’Adesky 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, and science.
"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
programssuch as Haiti’s accompagnateurs, lay caregivers who
counsel rural HIV patients and help them adhere to their treatmentsas
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, and Protest," 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 AIDS program.
Mother Jones.com caught up with d’Adesky in New York during her book tour
to discuss victories and challenges in treating AIDS globally.
MotherJones.com: 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?
Anne-Christine d'Adesky: 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 access.
MJ.com: 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 women.
ACD: 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 beor they have themselves
found to beeffective.
MJ.com: What strategies have been found to be effective?
ACD: [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.
MJ.com: What are your thoughts on Bush’s handling of AIDS
globally?
ACD: 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.
MJ.com: Would a Democratic administration do any better, or is
this something you’d see under either party?
ACD: 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 this.
MJ.com: You’re very critical of the makers of HIV medications,
which might seem contradictory for someone who argues for expanding
access to HIV drugs.
ACD: 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.
MJ.com: What would that kind of system look like?
ACD: 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 publicprivate 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.
MJ.com: But how do you spur research and development without the
incentive of profit?
ACD: I think you have to have new innovation. You have to be able
to have publicprivate 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
MJ.com: 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?
ACD: By bringing in resources for HIV, you immediately have to
talk about other diseasessexually 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.
MJ.com: Do you think there’s one county or program which would be
a good model for others?
ACD: 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.
MJ.com: What would it take for everyone who needs treatment to get
it?
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.
MJ.com: What are the biggest barriers right now to increased
access to treatment?
ACD: 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 increaseusing public and private moneythe 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.
MJ.com: What do you see as the biggest issues facing the delegates
at the International AIDS Conference in Bangkok July 1116?
ACD: 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.