An Interview with Marina Mahathir—Confronting HIV/AIDS in Malaysia

July 2005—Marina Mahathir has been president of the Malaysian AIDS Council for more than a decade and is chairman of the board of the Malaysian AIDS Foundation. A journalist since 1980, she is an outspoken commentator on social issues and has written a bi-weekly column for the Malaysian newspaper The Star since 1990. Ms. Mahathir, who is also the daughter of former Malaysian Prime Minister Mahathir Mohamad, graciously agreed to talk to the TREAT Asia Report about her AIDS work.

TREAT Asia Report: You spoke at the World Economic Forum in Davos in January. Did you get a sense that the world business community is getting serious about addressing HIV/AIDS?

Marina Mahathir: Yes, but in the larger context of dealing with poverty. There were many sessions on poverty and what to do about it, and how to help the poorest countries in the world, particularly those in Africa. There’s no escaping the issue of HIV. The World Economic Forum has tried in the past few years to have AIDS-dedicated sessions. Participants are becoming more aware that there is a problem and it does affect the economic development of the countries that they want to do business in.

TA Report: Could you give us an overview of AIDS in Malaysia?

Mahathir: Officially, as of December 2003, we’ve had something like 57,000 people confirmed HIV positive since 1986. That’s reported cases only. But the significant thing is that the numbers have increased steadily every year. A lot of these cases—about 72 percent—are among drug users. But we’re beginning to see more and more women becoming infected, so we think that the epidemic is going from injecting drug users into the general population.

TA Report: Is the Ministry of Health taking steps to intervene and to make sure that it doesn’t spread further into the general population?

Mahathir: They are, but we have different points of view on how that’s being done. Through the Malaysian AIDS Council, they are giving us NGOs a large grant every year to do prevention. But the fact is that we operate in an environment where it’s difficult even to talk openly about condoms or to do harm reduction programs, which is a big issue for us. So in many ways, we are given a lot of money to be set up for failure.

The government is doing well, though, in the area of treatment. They’ve done a lot to bring down the costs of antiretroviral drugs through pressure on the drug companies, and through bringing in generics from India. And they are providing a lot of it virtually free to Malaysians living with HIV/AIDS through government hospitals. They are also training government and family doctors to treat people.

TA Report: So generic antiretrovirals are now widely available in Malaysia?

Mahathir: Certainly we’ve got them and the Ministry of Health is now looking at issuing a compulsory license to manufacture a three-in-one combination drug here in Malaysia. The Ministry of Domestic Trade controls the patents, and it asked us whether we thought it was a good idea. We said yes, but I don’t know how long that will take.

In the meantime, the drugs are very cheap or virtually free for many categories of people in the government hospitals. However, we still have to educate people about the availability of these drugs and to encourage them to actually go and get treatment. The issue of stigma and discrimination still exists.

TA Report: So a lot of people are still afraid of talking openly about being HIV positive?

Mahathir: Yes, very much so. It’s something that we have to address head-on.

TA Report: How did you get involved in AIDS work?

Mahathir: In 1993 I was invited to chair the Malaysian AIDS Foundation. The main job of the foundation is to raise funds for HIV programs. But I realized at the time that it was really difficult to do, because people just didn’t understand about HIV and had all these prejudices. So I had to educate people about why they needed to support HIV programs, and to do that, I had to educate myself. HIV is one of those subjects that takes in so many different aspects. It’s really fascinating for me, and because I started talking openly, I kind of took on the work of Malaysian AIDS Council president. The Council is an umbrella body for 37 NGOs actually doing on-the-ground work in prevention, etcetera. A year later I was elected president and I’ve been there ever since.

We’re trying to professionalize the organization. I’m a volunteer, as is the rest of the executive committee, and we can’t commit all of our time to the council. So we’ve been trying hard to reorganize the council and the foundation and bring in more full-time professional people.

TA Report: Which of your achievements at the Malaysian AIDS Council are you most proud of?

Mahathir: I think we’ve come some way in making it more acceptable to talk about AIDS. We regularly see things in the papers—not always talked of in the best way—but it’s there out in the open. I’m quite proud of the work we’ve done towards making treatment more accessible, because it’s a lot through our advocacy that the government has taken on the treatment issue, and brought in generics. We’ve also done a lot of work educating the government on the ins and outs of compulsory licensing and other issues.

The other thing I feel quite proud of is working with religious leaders, particularly Muslim leaders. It took us a long while and several failed attempts before we finally found a way of engaging them in the issue. We developed a training manual on HIV for religious leaders, and we’ve been going around the country doing workshops and training. The response has been so good that now they want us to do more.

TA Report: You also took a group of religious leaders to Uganda. Could you tell us about that?

Mahathir: We decided that what we needed to do was to take them somewhere where they could actually see what AIDS means to a country, to communities where it’s really in your face. We didn’t want them to develop a fatalistic approach that says that nothing can be done about AIDS. So we took them to Uganda where there is a great program using imams, which has been successful in educating Muslim communities on HIV/AIDS. The first International Muslim Leaders Consultation on HIV/AIDS was being held in Kampala and we took them there so that they could meet other Muslim leaders from other countries who were doing AIDS work. That’s how it all started.

TA Report: Have you tried to use this as a model for educating religious leaders in other countries in Asia?

Mahathir: Yes, the training manual has attracted a lot of attention from different countries, especially around our region. We’re trying to translate it into English (at the moment it’s in Malaysian). We submitted it as an abstract at the International AIDS Conference in Bangkok and we did a satellite symposium on it. We are trying to organize something similar for the Asia Pacific AIDS Conference in Kobe in July.

TA Report: You’ve also been very active in trying to get schools to educate children about HIV in Malaysia. How successful have you been in that effort?

Mahathir: We had a director general of education who once said that schoolchildren never get AIDS, so there’s no reason to educate them. But lately, they’ve become much more open and we’ve been working for the past few years with the Curriculum Development Center of the Ministry of Education to see how we can insert HIV education into the current curriculum. The problem really is the training because teachers are so uncomfortable with the subject. They're afraid that the kids will ask them all sorts of awkward questions.

We’re trying to find different networks we could possibly use. For instance, all eighteen-year-olds go on a national service program for three months, and we’d like to be able to insert a module on HIV in that training program. I think we’ve been a bit more successful with private college students because there are certain subjects which are required by the Ministry of Higher Education to be taught in the private colleges and universities, and we found a way of integrating HIV into those subjects. They’ve been very happy with that. We developed a teaching manual and launched it early last year, and now the private colleges are working together to implement it. The next target is the public universities.

TA Report: Do you think, generally speaking, that governments in Asia are doing a good job of getting to grips with HIV and AIDS?

Mahathir: I think it varies. In some countries, like Thailand, there’s a long history of government response to HIV, and Cambodia is having to deal with it because it’s affected them so much. China seems to be responding reasonably well, and India is getting a lot of money, but whether it gets down to the ground is another issue. Governments need to take the lead, obviously, but they really need to impress upon the people that this is a big problem. I think what we find is that the general public either are not aware or don’t care, and that’s a problem. And business people are simply not interested. They think that it’s never going to affect them, that this is something that happens in Africa and not here.

So there’s a lot more to be done to make the public aware. As much as it’s been talked about, AIDS is still largely invisible for many people in Asia. That’s partly because of the lack of visibility in terms of government campaigns and so on, but it’s also because there are so many other problems. Lately, all you hear about is the tsunami, and that’s understandable—it’s a huge tragedy—but we can’t forget that underneath all that, there are all these other issues including AIDS.

TA Report: Do you think that AIDS treatment, care, and prevention may suffer as a result of resources being redirected to repair the damage that was done by the tsunami?

Mahathir: It’s a bit early to tell, but we hope not. I think it varies from country to country. Malaysia should not be affected, we hope, because we haven’t been affected so much by the tsunami.

TA Report: What do you think are the biggest obstacles to containing or overcoming AIDS in Asia?

Mahathir: Denial is a big problem. That accounts for its real invisibility. Occasionally we have a sudden burst of news, there’s an AIDS conference, or something like that, but generally there isn’t a lot. And that’s on the part of the governments and the public. For instance, ASEAN (the Association of Southeast Asian Nations) has a task force on AIDS, but it’s a meeting of ministries of health and they sit around talking about what they’ve done in the past year, and everything sounds wonderful, but they don’t discuss a lot of the real issues that are not related to health specifically. How do you protect women from HIV? You have to protect their rights. There should be a meeting of women’s ministries or whatever on HIV/AIDS. But that doesn’t happen. Unless these things are addressed, I don’t see how we can make much headway, in prevention particularly, in this part of the world. So we’re still trying to impress upon governments the multisectoral nature of HIV.

The one area I do think there is some progress being made, even here in Malaysia, is on harm reduction. A lot of HIV transmission is through injecting drug use in many parts of Asia, and in the past year or so, I’ve been seeing a real change in the attitudes of governments towards this. Before, it was zero tolerance for drug use and that was it. That’s changing in Indonesia, it’s changing in Malaysia—we’re taking baby steps. So we might actually be able to do something about prevention among drug users, and that will have all sorts of follow-on effects on other vulnerable groups as well. It’s something that we are cautiously optimistic about.

TA Report: Is this harm reduction through syringe exchange programs?

Mahathir: Mostly, in Malaysia at least, we’re starting off with methadone replacement therapy. We didn’t even raise the issue [of syringe exchange], but the government themselves, in the words of no less than the deputy prime minister, started asking, “Well, what about needle exchange?” We’re holding our breath a bit. A year ago, it would have been unimaginable. It’s really because of the failure of the usual, traditional methods of trying to deal with a drug problem. All we have is more drug users than ever and, on top of that, we have HIV. Basically, people are just fed up with the old ways, and want to try something new.

TA Report: If you had to write your epitaph, how would you want to be remembered?

Mahathir: I don’t know. I very much go by instinct and just follow what I think is right. Through AIDS, you are able to see so many things that are wrong and it is natural for me to want to fight against them. And that’s basically all there is to it for me. Everything else is sort of just picking up the intellectual backing for it, so to speak. It’s as simple as that.

TA Report: Marina, thank you so much for your time. Keep up the wonderful work!