Living Positive in Malaysia
Q&A with Andrew Tan, founder and president of myPlus, a network of HIV-positive people in Malaysia. Tan came out in public as an HIV-positive gay man in his speech opening night of IAS 2013
Photo shows: Opening Session. Speaker: Andrew Tan. Photo©International AIDS Society/Marcus Rose/Workers' Photos Andrew Tan is the 53-year-old founder and president of myPlus, a network of HIV-positive people in Malaysia. He has been infected with HIV for 20 years. Since 2002, he has spent much of his free time counseling HIV-infected people and those close to them. In his speech on the opening night of the IAS 2013 conference in Kuala Lumpur, Tan came out in public as an HIV-positive gay man. Andreas von Bubnoff spoke with him at the conference about being HIV positive in Malaysia.
What kind of work do you do?
I have a day job as an administration manager in a company. It has nothing to do with the field of HIV.
What about your HIV work?
My HIV work is actually volunteer work I do in my spare time on the weekends and after work. I do counseling to help anyone newly diagnosed, anyone who needs information, not only HIV infected people but also their parents, their wives, anyone else affected, whatever they need, whether it’s the mother or the father.
How do they find you?
The doctors at the hospitals in Kuala Lumpur—including two private hospitals—ask them to call me. That’s why my phone is on 24 hours. Sometimes they call me after everyone has gone to bed, so that they feel a little more privacy. They feel that they can actually speak to me after all their family have gone to bed. I allow that option for them as well.
How many people do you counsel?
2002 it was one, now something like over 400 and growing by the day.
You are in touch with 400 people?
Yeah, some of them are well adjusted, already in support systems, and some of them are new and need a lot more support. Some are people who come to Malaysia for work, just want to make sure that their medications are available in Malaysia; they worry that their combination of medicines is not available and they just want some guidance for that. Other than that it’s basically people who ask for referrals to hospitals. The most typical questions are, ‘Where do I seek treatment?’ So I am trying to link them to a hospital closest to them. That’s the primary goal—to get them into the system. Sometimes to make it easier for them, I accompany them for the first few visits, to get them registered and familiarize them with the hospital layout. It makes the visit less daunting. I also use the waiting time to see the doctor to provide counseling support and help them with the acceptance process.
Do you have a web site?
No. We are using Gmail, because we have no funding. Even our mailing address is a “care of” at an NGO called KLASS (Kuala Lumpur AIDS Support Services). This was where I first received my greatest support and learning opportunities.
What was it like as a gay man to tell so many people that you are HIV positive?
My family knows I am HIV positive and they are accepting of my partner. But my aunts and uncles don’t know. That’s why it’s so nerve-racking.
You said there is no antidiscrimination law at the workplace in Malaysia. What could the consequences be of you saying publicly that you are HIV positive?
I don’t know how it’s going to change my life. Definitely, there will be consequences, but how much of a consequence I don’t know yet. The thing is that definitely my colleagues will treat me differently. Whether that’s good or bad I don’t know. It might be good—they might start asking questions about HIV that might save their lives. They might learn how to protect themselves, and they might say things like, ‘I should use a condom.’ Things simple like that might save somebody’s life.
How big of a problem is discrimination at the workplace in Malaysia?
In Malaysia, when a person is dismissed or demoted due to their HIV status, they do not dare make a case of it because they know there is no law that protects their right to fair treatment. If they take it to the Industrial Court, the ensuing publicity and stigma will jeopardize their future chances of getting any jobs. So they leave their jobs, knowing that they have no legal recourse. An anti-discrimination bill would deter and reduce any abuse of the employer’s absolute power to fire anyone due to that person’s HIV status. HIV status is also a big issue for Malaysians working in Singapore because, for a work permit, you have to get an HIV test, so when you get the test and the diagnosis is HIV positive, you are told to leave Singapore, and then usually their passport is barred, so they can’t go back to Singapore even for a visit. It only affects people who are on the lower end of the spectrum—factory workers, people easier to replace so to speak. These people are losing jobs, and when they come back to Malaysia, they have the stress of trying to figure out how to tell their family why they left a good paying job in Singapore and came back.
What about the situation for gay people in Malaysia?
In Asia, a family would not make it public that their son is gay. Pride, the honor of a family—we call it face—is a very big thing for Asian families. Still, some of the families are actually quite forward thinking—my family practically adopted my partner. We have been together for 27 years already. Also, Islam, the official religion, takes a very hard stance if you are gay: The Ministry of Information has an unwritten rule that you can portray a gay person on TV but at the end they have to die or repent. The media tends to self-censor, even the private channels do it. We need to initiate proper dialogues with them; if they knew more about the challenges gay people face, then maybe they would be interested in doing something about it. Nobody “chooses” to be gay. Who I am was never my choice. This is just who I am.
What do you think about mandatory testing of Muslim couples who want to get married in Malaysia?
If any Muslim couple wants to get married, they have to do this test. When they test the couple, they are only protecting the woman up to that day, but there is nothing that guarantees the husband will not get infected after their marriage.
So the testing doesn’t really protect anyone?
It doesn’t protect her because most women get infected many years into the marriage. Either partner may be a drug user or seek the services of sex workers. Anything can happen. It would be better to encourage the public to seek testing as part of their regular health check-up.
What happens if the test is positive?
What happens in a lot of these cases is that the man is HIV positive and tells the girl. The girl still loves him, wants to get married, but they still have to take the test, because that’s part of the rules.
The test results are not made public?
No, they are not made public, but the problem is that the screening centre is supposed to inform the person who is going to solemnize the marriage, the “kadi”.
That’s the priest?
What happens then?
Sometimes the priest might refuse to marry them, thinking that the woman will be protected by calling off the wedding, sometimes they might take it upon themselves to tell the parents in order to stop the marriage, thinking they are doing a good thing. Human beings will always do what they think is best for the community. The judgmental attitudes are always in the name of religion, but never consider the real human needs and feelings of the individuals whose lives will be turned upside down with the cancellation of the wedding.
How important is it to have this meeting in Kuala Lumpur?
IAS has been very inclusive of the community. They brought the pre-meeting on cure to the community at a community forum, and it was interpreted into Malay as well, so the local community could understand it a little bit better. That is very rare, because we always talk about existing treatment, but we never talk about what to do in the future, because we never dream about the future. Part of the reason is that any medicines that come out will always be provided first in the US and in Europe and we are always at least five years behind, because any drugs that come in are vetted through the Ministry of Health and the Pharmaceutical Department, so it takes a lot of time for them to actually come into the country for actual use.
What do you hope for this conference to achieve?
A lot of times we talk about cure. I’m just glad that I can survive long enough to see something like that on the horizon. It might not be immediate, it might not in the next five years or 10 years, but I’d like to be around when it does happen. Meanwhile, I am looking forward to new more effective drugs with little or no side effects to come online. And I am getting older—I am now 53 years old.
That’s not that old, is it?
Well, they say HIV ages someone by 20 years due to the toll of the ARVs on the body as a whole and our liver in particular, so in fact I am 53 but living in a body of a 73 year old.