Mon State Self-help Group Leading the Way for People Living with HIV

By Reuters 6 January 2017

In the southeast of Burma, just outside of Mawlamyine in Mon State, the Shwe Nga Lay “Goldfish” Group operates out of an unassuming building, which they constructed with their own funds, write Patrick Duigan and Liam Best.

The group started projects in Thanbyuzayat Township in 2013 with the assistance and support of the International Organization or Migration (IOM) and is a support group for those in the community living with HIV. When the group was established there was a lot of stigma associated with being HIV positive, and many were seen as social deviants or, at worst, pariahs within their local community.

“HIV is a serious and scary disease and since I have a good moral attitude, I thought I would never suffer such a kind of disease. I disliked the people who had HIV and thought that they are suffering this disease because they don’t have a good moral attitude. I could only understand those people when I suffered HIV and it totally changed my mindset. I started to realize that anyone can suffer HIV,” says group member Wai Wai Lwin.

Burma is one of 35 countries that account for 90 percent of new HIV infections worldwide. In the southeast of the country, where migration within Burma and back and forth to Thailand is a part of life, access to services for HIV including testing, treatment and care and support is limited, particularly for those in rural areas or on the move.

IOM has been working with the communities and the National AIDS Program to increase access to services for both migrants and host communities. Part of this support includes helping to establish self-help groups like Shwe Nga Lay to empower patients and their families to work together with communities to reduce stigma and provide social supports.

The group is made up nearly entirely by those living with HIV and its members are passionate about making a difference in their communities and their own lives. They are involved in a range of community-focused activities that increase health education for people about HIV, such as in some local schools and additionally, support their members through monitoring medication adherence for the Anti-Retroviral Therapy medication provided by IOM and by paying for funeral costs.

“I felt like I wouldn’t live long, when the doctor told me that I have HIV. I didn’t know that there was an ART medicine for HIV patients. But as a Buddhist, I keep in my mind that I have to do good things before I die. An IOM outreach worker helped to refer me for testing and then for ART treatment and now I am able to live a happier life,” says Wai Wai Lwin.

While IOM provides HIV programmes in Mon State and in Kayin State, there is currently no comprehensive information available on HIV prevalence for migrants and mobile populations in Burma. Increased research and testing is crucial to understanding the most effective ways to reach these groups.

Shwe Ngar Lay group has come a long way since its inception. The group now operates a not-for-profit store nearby at Set Se Beach selling clothing on a plot of land donated by the Township Authority. The shop was funded by one of the group members and its profits go back into running the group’s activities. There are now plans to open a second not-for-profit store. An adjacent building will act as a ‘safe space’ for its members.

The group continues to live normal lives and is making an impact on changing attitudes and reducing stigmatization of people living with HIV. The group strives to be a positive force in their community.

IOM currently provides ART for almost 2,000 people living with HIV in South East Burma and is working with the National AIDS Programme to increase services and reach to migrants, host communities and ethnic areas of Burma.

“I know that by taking ART medicine regularly and by staying healthy, I could live long like someone without HIV. I don’t feel depressed about being HIV positive or thinking of having a short life. After I became aware about HIV, I am sure that I can lead a life like a normal person,” says Wai Wai Lwin.