amfAR, The Foundation for AIDS Research

Voices: Turning Tragedy Inside Out


October 2008—Bui Thi Bien is a treatment literacy educator in Viet Nam and the leader of Bright Futures Thai Binh, a support group for people living with HIV/AIDS (PLWHA). Her work with women's self-help and treatment literacy projects is supported by a grant from TREAT Asia.

I was born in a poor village in Kien Xuong district of Thai Binh province. I got married to a classmate when I was 19 years old. We were farmers; our life was simple but full of happiness. Five years later, we had two daughters and my husband moved to the city to earn money. In 2003, we decided to try to have a son. When I was six months pregnant, I went to a free program for pregnant women and got a blood test.

A month later, I received an HIV-positive result. I was so shocked that I nearly became unconscious. I was crying and protesting to my husband, and I asked my in-laws whether I should keep the unborn baby. Soon, our HIV status was known throughout the whole village.

My husband started to get sick and I had to take care of him, though I was still very angry. At the same time, I had to suffer the curious and fearful looks of villagers. I tried to sell my vegetables and fruits in the market but no one bought—not even my best customers. My in-laws even asked us to use separate cups and bowls. I used to think about death at that time, but the unborn baby moved inside me and I dared not kill myself.

To protect the baby, I went to the local health station to access the PMTCT [prevention of mother-to-child transmission] program. After two months of sickness without any treatment, my husband passed away, and I delivered my third child 10 days after his death. Everyone felt compassion when they saw me holding the baby and sitting beside my husband's altar. But I didn't know what my future would be. I had to bring up three children and face stigma and discrimination from relatives and neighbors.

After a while, I was invited to attend a meeting for the wives of migrant workers where I asked the doctors from the district health department about HIV transmission and how to prevent it. I brought back the materials to my mother-in-law and neighbors. I also saw something on TV about the outpatient clinic in Thai Binh. At that time, I didn't know anything about antiretrovirals and opportunistic infections. The doctor told me that I only needed to register and I would get free medication so I was very happy.

Once I began to learn more about HIV and speak out publicly about my status, things began to change. In December 2004, Viet Nam TV invited me to appear on "Happy Home Builders," a program about people who have overcome great difficulties such as poverty, illness, and stigma, and have managed to keep their families strong. When I traveled to Hanoi and met other people who had lived with HIV for years, I began to hope that I would live a few more years myself.

Then I thought of establishing a support group in our village. So the other seven PLWHA in my commune asked for help from the leaders of a self-help group in Hanoi called Bright Futures. Our monthly meetings helped group members monitor and manage their health, and our group activities attracted many people seeking spiritual and physical care and support. And with 27 members of our group receiving free ARVs from the national program, the death rate among us decreased significantly.

Many people in the community, even the local leaders, realized the effectiveness of our activities and began to support us. We were invited to training courses on treatment, leadership, communication, and drama performance. I even had a chance to participate in courses to train trainers on treatment literacy, and learned how to become a facilitator. I feel that what I am doing is so meaningful.

Now my support group is big, my children are growing up, and I have a chance to participate in many activities. Thinking back to five years before I was first diagnosed, I could never have imagined I would have such a bright future. In a small way I have participated in breaking the barriers of stigma and discrimination and have helped PLWHA be confident to disclose their status and get treated.

Many PLWHA still need our support and I hope our activities will help them to think positively, get out of the dark, and integrate into the community. I hope that the local authorities will partner with us in these programs.

Looking back, I am happy with what I have done. In the future, I hope to strengthen self-help groups in Thai Binh, educate a trainers team for each group, and update information and knowledge so we may form a collaborative, home-based care team in our province.