An Interview with Zackie Achmat

Facing a prevention crisis

  

Zackie Achmat

Zackie Achmat is one of the best known and most important AIDS activists in the world. He co-founded the Treatment Action Campaign (TAC) in 1998, which is now one of South Africa's preeminent AIDS organizations as well as one of the most influential activist groups anywhere. Since their inception TAC has been a critical proponent for affordable generic antiretrovirals (ARVs) and has challenged the South African government in and out of the courtroom over their slow response in making these medicines available.

For several years Achmat refused to take ARVs to treat his own HIV infection in protest of the government's failure to provide treatment to all citizens in need. His candor about his own struggles with the disease—he is most often seen in a tee shirt that reads “HIV Positive”—has helped create an open and supportive movement for the country's more than 5 million HIV-infected individuals.

Achmat was an activist long before turning his attention to HIV/AIDS. He was born in Johannesburg in 1962 and by the late 1970s he was leading student protests against apartheid. Later he began advocating for gay rights and eventually founded the National Coalition for Gay and Lesbian Equality.

In 2003 he was awarded both the Nelson Mandela Award for Health and Human Rights and the Jonathan Mann Award for Global Health and Human Rights. The following year he was nominated for the Nobel Peace Prize. Achmat remains a persistent and spirited champion for the rights of people infected with HIV, but as the epidemic in his country continues to grow—there were 500,000 newly-infected individuals last year alone with a prevalence rate among adults now around 25%—he is now also turning his focus to HIV prevention efforts. TAC is organizing a prevention march for early 2006 in Cape Town during the biannual international Microbicides conference. Achmat hopes it will create the same momentum for prevention as the treatment protest held at the 2000 International AIDS Conference in Durban, which is often referred to as a turning point in the battle for ARV access in developing countries.

VAX and IAVI Report Science Writer Kristen Jill Kresge recently spoke with Achmat about HIV prevention advocacy and how activists can ensure that communities understand the research and development of new prevention technologies like vaccines and microbicides.

What are the key challenges you still face as a treatment activist in your country?

Unfortunately there are still many challenges in South Africa regarding treatment. In our country about 800,000 people currently need treatment and fewer than 110,000 are receiving it. Of these, fewer than 70,000 are in the public sector. That's quite sad. There is also the need to establish second- and third-line regimens for people that fail their initial treatments and provide access to ARV treatment for children.

All of these problems are worsened by some serious mixed messages from our government, including denial by some of the science of HIV infection. This political and scientific denial really reinforces very deep, personal denial for many South Africans. The government isn't utilizing the strong and open HIV-positive movement, which doesn't exist in many other countries, to create further progress and that makes all of our tasks as activists much bigger. It's particularly difficult for the individual who discovers they have HIV and then doesn't have access to a doctor or nurse who understands what the issues are.

What is the situation with HIV prevention efforts in South Africa?

We don't simply have a crisis of treatment; we also have a critical crisis of prevention. Our country had 500,000 new HIV infections last year and it's critical that we act on that. It's critical that we look at why the ABC [abstinence, be faithful, use a condom] message has failed. You cannot reduce prevention of HIV to a simple slogan. It is a caricature of what needs to be a comprehensive prevention program that is linked to serious treatment and care issues.

I think all of us know that prevention is the key to ending the epidemic and that means we have to find new tools, like vaccines and microbicides. But there isn't a magic bullet and there's not going to be one for a long time so we have to use the array of tools that we have at the moment, whether it is barrier methods like male and female condoms or programs to prevent the mother-to-child transmission of HIV. We have some decent programs on prevention, but currently we're not doing enough to scale them up or to encourage openness about their use.

Why haven't activists done more prevention advocacy?

For many activists their inhibition is discussing basic science. Unfortunately all of us that have worked in prevention haven't developed the scientific literacy that needs to go along with a serious understanding of the social problems and inequality that inhibit behavior change. There is now some understanding of how gender and economic inequality hamper prevention efforts and put people at risk, but there isn't a scientific understanding of prevention tools and how they can be used.

I remember when we were first starting to do HIV work and all we worried about was giving out condoms. We never said how the condom prevented transmission of the virus and it's a tragedy that it took politicians and the Catholic Church to make us explain exactly how these tools work and get us to think about the science of prevention in a way we didn't before.

There are numerous prevention service organizations with people who talk about condoms or voluntary counseling and testing, but I am yet to come across someone in those programs who actually understands the science. It's just a simplistic ABC message, which is why these messages are so counterproductive because they actually stop people from thinking. Our first job as activists in South Africa was actually on the prevention of mother-to-child transmission and many of us who started TAC actually began in HIV prevention and human rights work. Now it's sort of coming full circle as we are trying to make sure that what we learned in treatment goes back into prevention.

According to the latest report from UNAIDS and WHO on the status of the global epidemic, the HIV prevalence rates among pregnant women in Kwazu-Natal, one of the hardest hit provinces in South Africa, is around 40%. Is there still debate about the use of single-dose nevirapine as a way to prevent mother-to-child transmission?

I have never believed in having one standard for the north and another for the south, but you have a situation in many countries where there are no antenatal services for poor women and so single-dose nevirapine is a first step. It provides an entry point for building the antenatal and treatment services that are needed. To automatically say that this regimen is third class and you either have to have the best or nothing at all is not practical. Even single-dose nevirapine is reaching less than 10% of people who need it. That frustrates me. We're still delaying both prevention and treatment significantly.

Presumably it's even more difficult to explain the basic science involved in the research and development of vaccines and microbicides. How can this be accomplished?

South Africa is one of the few countries where there is a relatively good understanding of microbicides among activists and increasingly within civil society because there are some really good researchers in the country. And all of us that are activists, whether in prevention or treatment, now have a much clearer understanding of what we need to do to ensure that there is access to information about microbicide and vaccine development. It's difficult to explain the science of microbicides and vaccines, but no more difficult than treatment. HIV treatment has allowed us to become engaged in science and it's time that we became a lot more scientifically literate about HIV prevention.

We need to find a way to reach out to a broader community and find people who love to talk about basic science and then bring them into the HIV movement so that we get to the point where the conversation about HIV vaccines, microbicides, and new medicines is an informed scientific conversation. There has to be a certain level of scientific literacy within communities because otherwise they can be exploited by either quacks or people who wish to misuse science for commercial or political ends.

I also believe it's important that we as activists don't try to undermine the outcomes of science. Whether it's favorable to what we believe or not, we have to support the integrity of the scientific process.

Recently there has also been a great deal of discussion about male circumcision to prevent HIV infection in men based on the results of a study in South Africa. How do you think the international community should react to this?

As soon as there's a scientific consensus we need to move with rapidity. But first we have to be aware of and prepared for every single pitfall. You have to consider situations where young men will go and get circumcised in a bush with unclean implements, without having been tested for HIV.

It's really critical that there be a global and urgent summit to discuss an appropriate way to respond to this. If the reduction is valid, then it will be an important intervention and it should be offered to every man who wishes to do it, along with condoms and other means of protection.

Many African countries face problems with infrastructure and lack of medical centers or trained physicians. Is this a problem in South Africa?

It's not South Africa's major problem but there is a problem with human resources. I was just looking at some research that said 12-16,000 of our nurses and doctors work outside South Africa. There are also 55,000 trained nurses inside the country that are working outside the healthcare system. So there's a huge potential pool of people that just need better pay, improved conditions, and minor retraining to be brought back into the system.

You were in New York City recently to attend a Global Health Summit sponsored by TIME magazine. Do you think it is important for the international media to keep global health issues in the news?

I think it is a major step forward that the US media in particular is talking about global health problems and raising it as an issue to inform Americans. Now this needs to be matched with the mobilization of civil society in the US on health, both locally and globally. It's very important to raise the issue of global public health and not just in terms of economic consequences or cost-effective strategies, but on what Helene Gayle [director of AIDS programs at the Bill & Melinda Gates Foundation] referred to as the policy of being a good neighbor and if my neighbor is sick then I should do something about it.

In that sense we still have a long way to go. We have to create a consensus that everyone has the right to life and everyone has the right to health care. And that includes understanding that the right to life is about a life with dignity.

What role has the South African media had in covering the country's epidemic?

The media in South Africa has played a critical role in discussing HIV. They raised awareness on the government's delay on providing treatment and on a range of other issues. There's still a lot more the media can do, but it's much better than almost anywhere else that I've seen. They've been dealing with the issues in a non-sensationalist and non-judgmental way and clearly laying out what still needs to be done.

South Africa is now hosting a Phase II vaccine trial and a Phase III microbicide trial. Do vaccine and microbicide trials in general receive much attention in the South African media?

Microbicides and vaccines get coverage, but the problem with the publicity has been with talking about them as magic bullets. This causes a degree of skepticism, both in the public and the activist community, about the potential for microbicides and vaccines. Skepticism is good for most things, but I think we need to eliminate this type of skepticism because it can paralyze us from taking action or wanting more information about these important strategies. There's no way we can proceed with an infection of this nature that continues to infect millions of people across the globe, and at least half a million people a year in our country alone, without educating ourselves.

We need to ensure that we understand the range of measures that need to be taken to end the AIDS epidemic. We can end the epidemic but there are at least two things we have to do: find a vaccine for tuberculosis (TB) and HIV. So I would like to see organizations like IAVI work closely with AIDS and TB activists. We have to end the solo approach to treatment and prevention and look at the broader impact and use of HIV as a way to promote really good medical care for everyone's benefit.

As the AIDS vaccine community begins discussing the possibility of testing vaccine candidates in adolescent volunteers there will undoubtedly be discussion about South Africa since there is such a high prevalence rate among 15-24 year olds. Is there any momentum building for this type of trial?

There's no momentum for it and there's not enough talk about the young people. I think that's certainly an area where we need to do some work. There's obviously a range of consent and possible infection issues involved, but the fact is clear that if you stand at least a 1 in 10 chance of getting infected then there's a duty to prevent that. And just as we try to advocate for condoms in school, we should advocate for very good trial practices for adolescent volunteers.

What advice would you give to the activist community?

TAC is regarded as one of the strongest movements in the country and as one of the strongest movements of people living with HIV in the world, yet I don't believe we reach 1 in 100 people in our country, maybe a little more or a little less. But there are 46 million people in our country. And in any other country the burden of dealing with such a public health crisis would not fall on organizations like ours, it would fall on the state, so we have to reach more people. We have the capacity. In our organization more than half of our activists are under 25. I'm really one of the oldest and I think these young people are essential. But we don't have the resources to reach as many people as we want.

Still we all must continue to educate ourselves, spread the message, and ensure that there's money available. But then also start looking three, five, even ten years ahead. What happens when a vaccine or microbicide becomes available? Do we have the systems ready for it? How do we make sure that access is once again not going to be limited? Discussion about vaccines allows us to talk about issues with intellectual property that rewards research and development and allows companies who want to make a profit to do so, while at the same time ensuring the widest possible access everywhere. Every person has the right to decent health care whether it's in the US, China, India, or South Africa.