07 June 2005

Wednesday May 18, 2005
Be bold

LAST Sunday (May 15) was International AIDS Memorial Day (IAMD), the day we take time off to remember the millions of people who have died of AIDS. These people were not strangers to us; they were fathers, mothers, brothers, sisters, children and friends, people who left us because of a disease that they did not wish to have.

On IAMD, as usual every year, Malaysians Living with HIV/AIDS get together to not only remember those who have gone, but to meet with one another, network and share stories, both joyful and sad. It is a day to remember that they are not alone. In fact, with over 60,000 people having been infected in our country, they are becoming less and less alone.

What is the lot of Malaysians Living with HIV/AIDS today? On the one hand, they could not have a better chance of survival. Treatment for those with the virus has become so much cheaper, from RM2,000 a month five years ago to less than a hundred today.

For those who cannot afford even that, the Government has said that it will provide free medicines for up to 7,000 people with HIV/AIDS, a highly commendable move. This was to be achieved through the importation of generic drugs from India that are far cheaper than the originals from the United States. But recently the Indian parliament passed the Patents Act that effectively made the manufacture of generics an impossibility. What does this mean to our noble efforts to help our fellow citizens survive?

While we can be pretty cheerful about treatment, on all other scores, Malaysians with HIV have never had it so bad. While they suffer from the stigma and discrimination associated with HIV, there are moves to increase this suffering by among other things, suggestions to isolate them on islands and to criminalise those who allegedly knowingly infect others (would this include men who refuse to wear condoms to protect their wives?).

While other countries including China and Vietnam are enacting anti-discrimination laws, we are moving the other way, each day finding ways to ensure that our fellow citizens are hounded even more. We shed tears for children infected with HIV but we do nothing to ensure that when they reach adulthood they do not suffer from discrimination on the basis of their HIV status. (Do we have laws to protect HIV+ children from discrimination in schools?) Is that because we think that these innocent children will never reach adulthood anyway? And that adults with HIV deserve the suffering?

In my 12 years working in this field, I have never been so despondent. While other countries have gained knowledge on how to deal effectively with HIV, we have only moved backwards. To have someone in 2005 talk about isolating people with HIV, an approach that was discredited very early on in the epidemic, is something we should be ashamed of. Yet there are so many people who take pride in their ignorance, not to mention their lack of compassion.

I have just been in a meeting of delegates from the Non-Aligned Movement on HIV. One of the strongest messages from the African countries that have so much experience in HIV/AIDS is that demystifying and de-stigmatising HIV/AIDS is crucial to effective prevention. As long as people remain ignorant of the facts about the virus and its modes of transmission, we will never contain it.

As long as people are unclear as to how the virus can and cannot be transmitted, they will have doubts. And it is these doubts, fuelled by misleading statements by public figures and sensational stories in the media, that leads to stigma. A recently published study of four countries on HIV-related stigma done by the International Centre for Research on Women shows that we are not alone in doing this. The roots of stigma in all countries are the same, and the effects are just the same; it causes the spread of the disease.

One of the most disastrous effects of calls to isolate people is that any programme we have to get people to be tested for HIV will fail. Why should anyone get tested if they know that if they are found HIV+, they will be put away? It is simple human psychology; you can never get people to do things that they know will bring a detrimental outcome. (People who are addicted to drugs do not think of it as detrimental because it is pleasurable.) Yet without getting people to voluntarily go for testing, we cannot counsel them for prevention of infection to others. Nor can we provide them with the early treatment so crucial to survival.

We need to ask why HIV should be singled out for this sort of treatment when other infectious diseases, such as Hepatitis, are not? Is it because it is incurable? Neither is diabetes or even the common cold. Is it because it is associated with death? So is cancer, yet we have so much sympathy for cancer patients.

Is it because we link it with immorality? Yet there are 40 million people all over the world with the virus. Are we saying that they are all immoral people? And since 95% of them come from developing countries, are we then saying that there is more immorality in the developing world than the West? Why is it that the West has less HIV, not more, than the poorer countries?

Political leadership is the single most important deciding factor in any successful HIV response. Every country that has managed to reduce its infection rates has been the ones where political leadership has been strong.

In Uganda, where infections went from 16% of adults to 6%, the President heads the National AIDS Task Force.

In Senegal, a Muslim country that has maintained its infection rates at just 1.5% by early education for its people as well as the distribution of 10 million free condoms, the AIDS prevention programme has the support of its political and religious leaders.

Even Iran is taking concrete steps with a strategic plan placed directly under the President which, among other things, allows for needle exchange programmes for drug users and the distribution of condoms among prisoners.

We have a choice at this juncture. We can continue as we are, refusing to do much more than superficial attempts at prevention while at the same time allowing non-experts to usurp the role of those who should have the expertise. Or we can be bold and take steps that we already know work. We must challenge the prevailing excuses for not doing the right things. In the end the numbers will tell. One day we will wake up to find we have a very serious epidemic on our hands. Then there will be no one to blame but ourselves for our complacency.