HIV Information for Myanmar salutes Phyu Phyu Tin and the work of her group on HIV in Burma. She has committed her "life to help people with the disease and to eliminate the spread of HIV/AIDS in Burma."

It is necessary to point out that there is a lot of material on treatment and care in this opinion editorial and almost nothing she has written concerns prevention. Unless prevention is successful there will be many more people to care for in the future.

[him] moderator

******************************

Defeating HIV/AIDS, Preserving the Future
Phyu Phyu Thin
Irrawaddy
Monday, October 19, 2009

When the immune deficiency syndrome disease (HIV/AIDS) first appeared in Burma in 1988, it was said that the first case was that of a sailor who was infected with the disease.

Possibly for that reason, after 1990 the syndrome was commonly known as "sailors' disease." Then the disease spread among the homosexual community in 1994-95, and it was called the "gays' disease."

I learned a little about the disease in school, but personally, I wasn’t very interested in the issue.

When I joined the National League for Democracy (NLD) in 1996, I became involved in various social issues, but HIV / AIDs still wasn’t high on my list.

By that time, it was well-known as the "4-alphabet disease" among Burmese youth, or "Lay lone disease” in Burmese. Many people were afraid when the government launched its first awareness campaign with billboards saying, "AIDS has no cure and there is no medicine for it."

Apart from awareness campaigns, the government had no program to give blood tests to people in vulnerable communities such as drug users or sex workers, and it neglected the spread of the disease.

As the situation worsened, many people died from HIV/AIDS. In my small community, adults and youths died from the disease, their bodies shrinking into the form of a skeleton. If someone asked, their relatives might say that they died from tuberculosis (TB) or cerebral malaria.

When she was free for a brief period, Aung San Suu Kyi, a leader of vision, said during a speech in 1998 at the 13th International AIDS conference in Durban that openness will help control the spread of HIV, since people can discuss how it is contracted, how to control its spread and how to help those who already have the virus.

She said "containing the spread of HIV/AIDS is preserving our future," and, "If we could develop more compassion in this world then we would all have achieved a happier, more peaceful world."

Suu Kyi selected 19 NLD youth members to be trained in HIV prevention and care at the United Nations Development Program office in Rangoon. After the training, all 19 members started working in a NLD prevention and care program for HIV/AIDS patients. Since then, without financial assistance or salaries, we have worked to deliver care and raise HIV/AIDS awareness.

Meanwhile, the authorities are always looking at what we do, and they sometimes harass us because we are NLD members. It’s hard to keep the work going. The program continues with a small group of workers, including me and Khin Htar Yee, who is liked my elder sister. With meager resources, we keep the program going amid many uncertainties and great anxiety.

I recall that our first HIV/AIDS patient was a police officer. Since then, we have cared for almost 2,000 infected patients. Many of our patients died while receiving our care. Many stories are tragic, but others are heart warming.

In our early days, we treated patients unsystematically, and we learned as we did our work. We went to patients' homes and offered help such as washing clothes, cleaning a room or cooking. We were not familiar with HIV/AIDS medicines, and we had no source for knowledge or supplies. The patients were thankful for our support, but we couldn’t provide medical care, and they died.

At first, we faced tremendous hardships because of the stigma attached to HIV/AIDS. Most patients didn’t want others to know of their illness. In some cases, families welcomed us. But many families rejected us, not wanting to be associated with the disease.

At that time, most people believed HIV/ AIDS was a disease of bad moral character or shameful behavior. The problem was compounded by the military government’s fear-driven campaign. Many patients would not go to hospitals or health services, and they wanted to keep their infection secret, which could sometimes lead to reckless lifestyles and more infections.

Many patients arrived too late to be treated at the Wai Bar Gi Infectious Disease Hospital. Those who could be treated often couldn't afford to buy drugs in the government’s ill-equipped hospitals.

Now many of our patients are given ARV (anti-retroviral drugs) medicine and support, and most can continue their lives.

However, while cheaper and affordable drugs are now available, some patients still go to faith healers or take herbal medicines or dangerous concoctions, seeking a cure. Some even eat dog meat once a day, believing it can cure them. We have a long way to go to remove misguided beliefs and deep-seated fears.

If Suu Kyi were free and able guide us, we could work to support our patients and treat the disease even more effectively.

I have committed my life to help people with the disease and to eliminate the spread of HIV/AIDS in Burma.

I urge people to join in the fight to prevent this catastrophic disease.

Phyu Phyu Thin, a member of the National League for Democracy, is a key organizer of the NLD’s HIV / AIDS outreach program,

http://www.irrawaddy.org/opinion_story.php?art_id=17021