An Interview with Zackie Achmat—AIDS Activism in South Africa: Lessons for Asia?
July 2004— Zackie Achmat lives with HIV and has been an activist since the age of 14. He was detained and imprisoned several times as a youth activist protesting apartheid and has continued to risk arrest in his work to protect the human rights of, and secure treatment access for, HIV-positive South Africans.
In 1998, Achmat and ten other activists launched the Treatment Action Campaign (TAC) and immediately took a stand to bring down the high drug prices that made it impossible for lifesaving treatments to be brought into South Africa. For his work, Achmat has received numerous awards, including the Jonathan Mann Award, the Nelson Mandela Award for Health and Human Rights, and amfAR’s Award of Courage.
A member of the African National Congress (ANC), a founder of the National Coalition for Gay and Lesbian Equality (NCGLE), and a former director of the AIDS Law Project, he is now, together with other members of TAC, a nominee for the 2004 Nobel Peace Prize.
The TREAT Asia Report spoke with Achmat about the importance of civil society in the fight against HIV/AIDS, the XV International AIDS Conference in Bangkok, and how the Treatment Action Campaign’s strategy might be employed in other countries.
TREAT Asia Report: Have you always considered yourself an activist?
Zackie Achmat: Most socially aware people of my generation would have been political activists. I grew up in South Africa under apartheid, and I became politically active in 1976. I consider myself a political activist and human rights activist before anything else.
Bayard Rustin was a civil rights activist and a gay man who organized the 1963 March on Washington. One of the things he said is fundamental to all of our work in the Treatment Action Campaign. He said that protest confers dignity on people whose dignity has been destroyed. Activism not only gives meaning to our lives, but it affirms principles like equality, freedom, and dignity.
TA Report: Is activism a necessary step in the evolution of the world’s response to AIDS?
Achmat: There are several things about HIV, and treatment specifically, that require activism. The first is the systemic and social problems that make people vulnerable and put them at risk. If you’re an African man who has sex with men, a migrant worker, or a woman, you are at a much greater risk. Activism is the one way to win incremental changes that improve people’s lives on a daily basis and reduce the risks or mitigate the impact of HIV/AIDS.
But activism is also important individually in relation to stigma. The worst problem with stigma is not the community. It is self-stigmatization. People I know living with HIV do not fear what others think of them, but actually what they themselves think about the disease and their behavior. There’s a certain sense of shame. Activism helps people expunge that. Your identity can never be reduced to three letters of the alphabet or to a disease. But the minute you assume your HIV status as something that is part of your life, not something to be proud or ashamed of, but something you live with, the prejudice and the stigma become someone else’s problem.
TA Report: What role does treatment activism play?
Achmat: It is critical. I’ve never been to the International AIDS Conference, but when friends returned from the 1996 conference, they told me about an HIV-positive man who knew more than most of the doctors about the medicines.
My activist work to that point had been in human rights. As an activist, I never thought of HIV in relation to health. That is what inspired me and other colleagues to form the Treatment Action Campaign. We realized that unless you know about your illness, how to treat it, the dangers of your treatment, and the political and economic context in which you need treatment, you are not going to survive the epidemic.
TA Report: You didn’t go to the 2000 conference in Durban, South Africa?
Achmat: I was protesting outside.
TA Report: Will you go to the International AIDS Conference in Bangkok in July?
Achmat: Yes, for several reasons. The first is that the United States, and to a certain extent, the Thai government, and drug companies are trying to empty the international conference of the little bit of activist content that it had.
The second reason is that the South African government is shamefully delaying the HIV treatment plan announced in November 2003. In a country where each day 600 people die and there are 1600 new infections, it’s important to raise international awareness. It is important to link people together so we all know what is happening, for instance what the Thai government is doing to Thai drug users, what the Chinese government is doing in relation to its own activists. Raising awareness and learning of the experience and problems of other countries is very important.
The third reason is that I believe that the Bush administration is the greatest threat we have seen to public heath and to human security. Through the President’s Emergency Plan for HIV/AIDS Relief (PEPFAR) and USAID, programs in our countries aren’t allowed to advocate for the right to termination of a pregnancy or the use of condoms. What the Bush administration is doing with PEPFAR money is trying to separate HIV/AIDS from other social justice questions. We can’t allow that to happen. The International AIDS Conference is a very important platform on which to say that.
TA Report: You have already had great triumphs in reducing the price of antiretrovirals and pressuring your government to provide treatment. What is your fight now?
Achmat: One thing that is central to our work is treatment literacy—making people aware of what medicines exist, how to deal with opportunistic infections, and issues affecting our lifestyle and behavior. Now, with the possibility and probability of HIV treatment in South Africa, it is very important that people who are directly affected understand why it is important to take the pills at the same time every day. Unless an individual takes control over her or his life, there is no way we will succeed in providing treatment.
TA Report: Is lack of treatment literacy a major obstacle to providing treatment worldwide?
Achmat: It’s different from continent to continent and country to country. But, overall, there are similar challenges. We have an over-concentration of expertise, knowledge, and human resources in regions least affected by the epidemic, such as Europe and North America. Not only that, but in the developing world, we have a structural problem in which our health professionals move away from our countries because our health care systems have been so depleted. One of the biggest challenges that we will face is the shortage of human resources to assist with the impact of the epidemic.
TA Report: What needs to happen?
Achmat: There are increasing amounts of resources to treat people and to prevent HIV, but the money is not placed into organizations like the Global Fund to Fight AIDS, Tuberculosis and Malaria. The Global Fund is multilateral and does not attach strings to the use of money, like PEPFAR does. Though costs of drugs have come down, the price of diagnostic equipment is still high, and we need to start looking at second- and third-line regimens. I would like to spend the next two years working to ensure that we have continuous sustainable human resource capacity.
TA Report: Are you encouraged by the shift that has occurred with the pricing of antiretroviral drugs by pharmaceutical companies?
Achmat: Many people feel marginalized and powerless in the face of what seems like unbridled capitalism. The global movement for treatment access said: “Hold on a minute, corporate entities have a social duty and responsibility.” But treatment activists and international NGOs tend to sulk too much if we don’t get everything we want. We’ve made huge advances in bringing the price down. The medicines I take today were priced ten times higher before we started our campaign. That is a result of local mobilizing, global mobilizing, and pressure. The global AIDS community—scientists, community activists, and governments—held companies to account. That doesn’t mean we’ve got everything, though. It’s important to remain vigilant.
TA Report: What lessons have you learned that might be helpful to activists in other countries?
Achmat: The most important one is to build, at the community level, groups of people who understand the disease scientifically and can explain it. That is critical to sustain any activist movement over the long term. We must achieve sustainable change in our country’s health care systems and in development programs. This epidemic is going to be with us for 50, maybe even 100 years. Its impact will be felt for many generations to come. You must build groups of activists, even if you have only 5 or 10 people, even if the obstacles are daunting and you’re poor.
TA Report: Is that what it was like when TAC was started?
Achmat: When we started TAC, we didn’t have any funding. We’d march into organizations and announce, “we’re going to use your photo copier and you will have to throw us out.” Those of us who could draw or write would make posters. Today we have an official membership list of 8,000 activists who run our organization across the country. That happened because a small group of us were prepared to stick our necks out and not be scared of being a few and not be scared to grow. You must have an activist leadership that understands HIV, public and private health, and your country’s finances. You don’t need PhDs for that. You just need a group of citizens who know that they have the right to ask the right questions and get answers.
TA Report: Do you think your approach can be replicated in other countries?
Achmat: One of the things TAC has used is our tradition of political songs. We adapted our songs to sing about drugs like fluconazole and AZT, to sing about drug companies, to sing about our president’s denialism. Those songs became part of our mental and cultural vocabulary. In another country, it might be storytelling or writing. In China, one of the things people used in politics was wall newssheets. In every culture, we can adapt the basic scientific information. The secret is not choosing any one method over another, but using each one to reinforce the others. That is how you achieve impact.
TA Report: Are there similarities between the situation in Asia and South Africa?
Achmat: Asia, like Africa, has many different dialects, languages, and forms of art, politics, culture, and governance. As long as there is solidarity between all of us on the basic principles of the right to life and the right to access health care, each country can adopt its own approach, whether it is to create treatment literacy materials or campaign for your government to take serious steps to address the epidemic.
Thai activists have done some fantastic work. We would not have been able to bring down the price of fluconazole if it had not been for direct cooperation between Médecins Sans Frontières, the Thai Network of People Living with HIV/AIDS, and TAC. Cooperation like that has produced immediate results that benefit people across the world.
TA Report: You have been taking antiretroviral therapy since September. How is your health?
Achmat: In the first four months, the transformation was phenomenal. Short of being born again in a biological or revivalist sense, I don't think anything else can compare. I had my energy, concentration, and desire to live back. I was cooking and cleaning my house, which I hadn’t done for years. I was suddenly able to look ahead 10, 15, 20 years and plan. I went from having two, three infections a week, to literally having two or three colds in a year. It has been absolutely fantastic. Unfortunately, in the fifth month, I developed a side effect called peripheral neuropathy in my feet, and I ignored it. I did not want to change my drug, because I was on the same regimen that would be available to the public. But it really became very bad, and I changed my drug. It’s under control now.
TA Report: Thank you, we wish you good health and good luck.