News: In her new book, journalist and activist Anne-Christine d’Adesky argues that access to AIDS medicine is a fundamental human rights issue.
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 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, 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 be—or they have themselves found to be—effective.
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 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.
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 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
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 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.
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 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.
MJ.com: What do you see as the biggest issues facing the delegates at the International AIDS Conference in Bangkok July 11–16?
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.