The Spread of AIDS in Asia

Interview: Marina Mahathir

Marina Mahathir
Manila: Marina Mahathir speaks at the closing ceremony of International Congress on AIDS in Asia and the Pacific (Photo: AFP).

On Dec. 1, people around the globe will observe World AIDS Day. Ceremonies will pay tribute to those who have died from the disease, spread information about how it can be prevented, and express support for the estimated 45 million people currently living with HIV and AIDS. This year’s chosen campaign theme, “Live and Let Live,” aims to reduce the stigma and discrimination that often accompany HIV and AIDS.

One place where stigma and discrimination remain especially prevalent is throughout the Asian continent. One reason for this is that while AIDS has existed in the West and in Africa for some time, it has come to Asia only relatively recently. But though the Asian version of the epidemic is just in its infancy, it is quickly becoming a staggering crisis.

Marina Mahathir, President of the Malaysian AIDS Council, a non-governmental organization, and daughter of Malaysia’s Prime Minister Mahathir Mohammed, began working as a journalist in 1980 and, since 1990, has written a bi-weekly column in Malaysia’s pro-government newspaper The Star; she has published a book, In Liberal Doses, with excerpts from that column. Her writings often treat feminist themes and do not shy away from topics that are traditionally considered taboo in Malaysian society, such as her divorce and her two marriages to foreigners.

But for the past eight years, much of Mahathir’s work has centered on AIDS advocacy. Recently elected to her fifth two-year term as President of the Malaysian AIDS Council—an organization she first became involved with as a fundraiser—she came to New York earlier this month to speak about her AIDS-related work. While here, she spoke to World Press Review about why the epidemic is spreading so quickly in Asia, how religion influences attitudes about treatment and prevention, what role she believes schools should play in AIDS education, and how her family legacy affects her work.

Can you give me a sense of the scope of the HIV/AIDS crisis in Asia?

The thing about the Asian epidemic is that it is just in its infancy. It has been later in getting to Asia, but now that its there, it is rapidly expanding. Nearly 8 million are infected across the continent. China has about 1 million. India has almost 4 million. And the rest is scattered around Southeast Asia and a little bit in the Pacific Islands. But the numbers themselves are not as important as the trend. The worrying thing is that the numbers have increased tremendously. And if nothing is done, we are going to see a huge epidemic that will easily dwarf what is happening in Africa. Asia just has so many more people [than Africa] that even if just a small percentage of Asia got infected, it would be much bigger than Africa. The message we are trying to tell people is you have to act early because that is the only way to manage it.

You mentioned that HIV/AIDS was later in coming to Asia than it was to other parts of the world. I’m wondering why Asia was immune to the problem for so long and why the problem has reached crisis proportions in Asia so quickly?

There are no real answers why it was late; it may have been around but somehow conditions were not there to help it spread. If people don’t move, for example, the disease won’t move either. But lately in Asia, with all the economic upheaval, people are moving around more, and that has helped to spread HIV.

There are many factors in Asia that aren’t really different from Africa. Though, on the whole, I think we are generally better off economically [than people in Africa], there is still a lot of poverty, a lot of disparity within countries between people of different economic groups. And therefore people will constantly go to look for better lives—willingly or unwillingly. That’s what makes women go into sex work. That’s what makes a lot of men go overseas to find work. That’s what makes people move around as domestic workers. The story of migration in Asia is incredible. And unfortunately, along with this has gone HIV.

Plus, there is a lot of ignorance about HIV in Asia. We read about it a lot, but we think of it as a Western problem or an African problem, not as an Asian problem. But unfortunately it is an Asian problem now.

Are there any lessons you learned from seeing AIDS spread in the West and in Africa before it hit Asia?

The main lesson we learned is to act early. In a lot of the worst hit countries, a lot of the problem has to do with having a delayed response. Acting now is everything.

The world has changed from what it was like at the beginning of the epidemic. We’ve gone from having absolutely no cure to still having no cure, but having treatment. And treatment has changed the AIDS landscape. That old message “AIDS kills” is not necessarily true any more. But once we’ve said that, we’ve got to tell people why that’s not true, and what they can do to make it not true. And then the problem is the cost of the drugs.

I believe that talking about treatment is essential. It is available now. If we simply talk about prevention and don’t talk about treatment, it is not enough. We have testing facilities everywhere and testing is not expensive. But people don’t take it up. Why? Because they often feel “why should I go for testing and find out I am HIV positive if there is nothing I can do after that?” You have to tell people “there is something you can do.” And that makes people come for testing. And then you can counsel them about prevention. We keep only giving half the message.

Considering how different Asian countries are from each other, can there be an “Asian way” of dealing with the AIDS crisis or do programs have to be developed on a country-specific basis?

I don’t believe in generic responses. I think this is one of the great mistakes that we have seen: taking a successful program in one country and trying to transplant it wholesale into another country without looking at local conditions. All the responses have to be tailor-made—sometimes even more locally, even to specific communities. You can be dealing with a lot of disparate groups even within a country. There’s no way you can talk to women the same way you talk to men about this issue. Talking to young people has to be different from talking to old people. Talking to people who use drugs, or who are transsexuals—it’s all different. People have different issues that make them vulnerable. And so generic messages—which is what we have been giving for far too long—have really gone over people’s heads.

In Malaysia, for instance, we’ve had AIDS for at least 15 years and people are still shocked to find out they are HIV-positive. And they say, “I’m not a drug user. I’m not gay. How come I got it?” So the message hasn’t gotten through because we’re not really addressing what they are facing.

Thailand is considered to have been relatively successful in dealing with the AIDS epidemic. How has it developed programs that are tailor-made for Thai society?

The key again is having an early response. In 1991, Thailand’s prime minister decided that AIDS was an issue that merited national attention. He set up the National AIDS committee and ensured that each sector of government was involved—plus he brought in the private sector, plus he brought in NGOs. So really there were two things: the early response and the political commitment that came from the top. And because of that, Thailand had predicted that they would have 2 million infections by the year 2000 and it didn’t happen—which meant that they saved about a million lives. No other country in our part of the world can say that. And that’s what we are trying to push for the rest of Asia: good leadership and acting now. The two come together really. We’ve had a lot of early responses from the grassroots level but community groups can only do so much. They often operate in difficult environments. It is really up to the government to make the environment an enabling one.

Have what are often referred to as “Asian values,” such as saving face, stood in the way of people coming forward and getting treatment for AIDS?

I don’t know if saving face is uniquely Asian, but I think it does stand in the way of many things. We have people who don’t want to accept that someone in their family is a drug user—and its even worse when the person has HIV. There’s such a stigma attached to HIV. This is why we need to set up safe places for people to go and get information, anonymous places if possible. People are afraid—maybe not for themselves, but for their families.

One of the most effective ways to educate people about HIV is to have people who are living with HIV speak out. But this has been an enormous problem for us because even if you find someone willing to come out and say they are HIV positive, they have to think about their how it will reflect back on their family. This has been a real barrier stopping us from being able to put a real face on the epidemic.

You have been trying to get sex education, and education about AIDS in particular, in schools. Could you talk about the curriculum you are trying to develop?

A lot of people [in Malaysia] believe that AIDS education should be in schools. It is an effective delivery system; school is compulsory up to age 15. But AIDS education is not possible without sex education—it is a sexually transmitted disease. Given the growing awareness that AIDS is a problem, people do feel that young people need to be educated. And parents constantly ask me why it can’t be done in schools.

And so, in response to that, after a lot of trying, we finally got to meet with the minister of education and say “look, we really need to do this in schools and we are happy to help out.” We started working with the curriculum development center—they are the ones who develop the entire syllabus for the government school system—and they’ve been quite open to it.

The only trouble is that you can have a syllabus, but it might just sit there. In fact, sex education has been in the school syllabus for a while. But the problem is that it is divided into three different subjects: physical education, biology, and religious studies if you are Muslim and moral studies if you are non-Muslim. So you need three teachers to give you parts one, two, and three—and they all have to be equally motivated and committed. If not, you might get part one, but not parts two and three—which might be more important to you. I’ve seen endless scrapbooks filled with drawings of the virus. It looks so nice and I just don’t have the heart to tell the kids that this is really not going to help them. This is not the issue. You are not going to see HIV coming and then just step out of the way. It’s not just about your body or biology, its about relationships. How do you say no when your peers are pressuring you? Those are the things that are not being dealt with.

We frequently talk to young people and say “do you talk about sex?” and they say “all the time.” But the myths that go around are really incredible. We found one boy who for some reason thought that semen came out of your knees. I don’t know why he thought that. But he did, he thought so long as he kept his knees out of the way, he’d be OK.

Also, teachers need to be comfortable with this. I give talks to young people and I open the room up to questions. And I invariably get some little guy coming up to the front and saying, “is masturbation safe?” And you can see the teachers, who are all sitting in front, gasp—horrified that this question is being asked. But I answer it, and answer it straight. I think the only way to do it is with no winks. And the teachers, as horrified as they are, are relieved that someone is answering it. So these are the things the teachers are going to have to learn to talk about. Are they equipped?

We started working with the National Union of Teaching Professionals and they are quite open to this. And this might, actually, be a less bureaucratic way of getting the teachers involved.

You have also developed a theater program as a way to educate kids about AIDS.

That has proven to be very interesting. For one thing, it is creative and different—and kids appreciate that. They are so tired of being lectured to. We go into the schools—it depends on whether the school lets us in, there are some schools that say no, there is no way anything about AIDS is coming into our school and there’s nothing we can do about that. But the ones that do let us in, the kids love it. The actor who works with us is such an engaging personality and he just has a way with talking to kids. Second, we keep the teachers out of it. The teachers all get very nervous about this; they hover around the fringes wondering what is going on. But we are very strict about this. It needs to be a safe space so that the kids can express themselves.

[The actor who leads this] is very well versed, so he can give a talk about AIDS issues. And then he teaches them drama techniques, which is, by itself, a nice skill for the kids to have. And then we ask the kids to develop their own plays. I have been very impressed by some of the scenes they have taken up. It’s very different from adults. They talk about stigma. They talk about being different. Even someone in a rural area school talked about being gay. OK, it’s not Broadway, but they try their best. They talk about talking to their parents about AIDS and how they can often educate their parents about AIDS. I’m very encouraged about what we are doing. But we really need to think about getting more resources. There are about 8,000 secondary schools in Malaysia.

I’ve seen kids do plays about AIDS without the benefit of our initial training and you get all the stereotypical messages. One group of kids did a story about someone who went to Paris and was away from his wife and went to a sex worker and got infected. It has to happen in Paris? It could happen next door! So its really better to orientate them correctly first.

Malaysia is a Muslim country. How does religion come into this?

Religion is such a big influence in our lives. And while most people in Malaysia would think of themselves as good Muslims, there’s often a disconnect between that and what they do. From a public health point of view, it is the reality that is crucial to our work because it is the reality that exposes people to infection, whatever religious feeling they may profess to.

Our issue with the religious authorities is that they are only dealing with half of people’s lives. They have to come down form the ivory minarets and see what people’s lives are really like. And in terms of HIV, you have to deal with those realities. Just because someone goes to the mosque twice a week doesn’t mean that they other days they are behaving like they are in the mosque. That’s a fact of life.

So we’ve taken a serious interest in involving the religious establishment in the national response. We had several failures at first in strategizing. Now I think we are getting better at it and they are coming in. They are leaders in thought—in how people think about things—and of course this affects the idea of women, the idea of marginalized groups, of stigma. It is important for us to respond. It is not easy. I’ve been more vocal about some of the more extreme pronouncements from religious leaders. And I’ve gotten a lot of flak for that.

[Some religious leaders] are saying “you should check why someone is ill before you go visit them” or “prevention is much better, so let the ones who are already affected just die.” There is this idea that because [the religious leaders] are associated with morality, that [when they talk about] prevention, it is prevention of immorality. But most people don’t get up in the morning and say: “today, I’ll go do something immoral.” Somehow, circumstances lead them. And they can always justify it. People can justify anything. So if you start to talk about morality and immorality, people will say “you are not talking about me.” And again, it just goes over their heads and does nothing in terms of protecting them.

So what we are trying to do at AIDS Council is not to take sides in any way but to bring all these disparate elements together in order to provide a more realistic approach. Religion is important, so we are trying to bring a more realistic face to the religious response.

We have developed a project to take religious leaders to Uganda where they can see for themselves that AIDS is not a western disease—it’s happening to poor people, it’s happening to perfectly reasonable people, it’s happening to Muslims, to men and women and families. And yet [they can also see that] something can be done—and is being done. You have to get rid of the fatalistic aspects of this. People sometimes say “nothing can be done.” But we can do something.

Have any of the religious leaders you took to Uganda come back to Malaysia and spoken out about AIDS?

Yes. One of those who we sent—Ustad Pirdaus—is now one of the chief imams at the National Mosque. I actually met him before we even thought of sending people to Uganda. I was very interested in him because I sat next to him at some function and he started talking to me. This is significant because male religious leaders don’t suddenly start talking to women. But he did—and he started talking about AIDS. And it turns out that he had been counseling people with HIV—the mosques do have counselors. So he had a real idea of AIDS as a living thing. He was saying these people have a right to live too. So we saw him as a good candidate and we took him to Uganda and when he came back—he is very popular, he speaks on TV and such—he started talking about Uganda. And just these little things mean a lot. It is what we are trying to encourage. It is not enough that Marina thinks this. I don’t have the entire country as a constituency—it would be nice if I did, but I don’t. So I need to encourage community leaders to do these things. We are also trying to encourage peer education—religious leaders to religious leaders.

How does being the Prime Minister’s daughter affect your work?

It works in two ways. The main thing about it is that it gets attention—positive and negative attention. There was this thinking when my colleagues asked me to [get involved with the AIDS movement] that they needed someone who was well known to attract attention. I came in as a fundraiser. And I did not know, at the time, what a commitment it required.

I do get listened to and I certainly get doors opened. If there are three doors for other people, there might only be two doors for me. But when I get in there, I still have to talk sense. So I’m more than a name—I actually work, I actually know what I’m talking about.

The disadvantage is that I’m sometimes a surrogate. Politicians who feel that they don’t want to directly criticize my dad use me as a surrogate. I’ve been on the front page of the opposition newspaper, criticized for consulting with all sorts of immoral people, and so on. I don’t particularly care. Our position at the AIDS Council is that we hold people from all parts of the political spectrum accountable. AIDS doesn’t care what your political affiliation is.

I realize the surrogate position I am in, and I don’t take it personally. But sometimes it is a pain in the sense that I have to go far more meetings than I really should be going to. Sometimes I’m just there to make sure people behave because if my staff goes there they are so easily dismissed.

I think my dad was mystified in the beginning about why I took up this cause. One time, I asked for an appointment to go talk to him about AIDS and it took me eight months to get in. Eight months! And I only got in because Nelson Mandela cancelled a trip and suddenly his diary was free. And the secretary said, “Hey, do you want this appointment?” And I said “yes.” I went to meet my colleagues and we prepared like crazy beforehand. My dad has a reputation that if you go do a presentation, you better have all your answers on your fingertips—if he catches you out, you’re dead, your whole argument is going to fall to pieces if you can’t answer the crucial question. And you can be sure he is going to ask three crucial questions. So we prepared like crazy on a lot of economic and social impact issues and cost, and things like that.

And we also brought a woman who was HIV-positive. We didn’t tell him, we didn’t tell anyone. She was a teacher, infected by her fiancé. He died and she accidentally saw his medical report—and she’s been living with HIV ever since. She was teaching in the government system so she was a government servant. I think she made a profound difference. At the meeting, I spoke a bit and another doctor spoke and then the woman got up and said, “I’m HIV-positive.” And my dad was not expecting to see a person like this. And I think this made all the difference in the world.

Whatever anyone can say about my dad on other issues, I think on AIDS he has been very good. I’m not saying that just because I’m his daughter. He’s a doctor [he was a medical officer in the Malaysia Government Service and also worked in private practice], so he understands these things far easier than most people.