“Sometimes the discrimination hurts more than the symptoms” - A monk’s journey from patient to community advocate

Ashin Sandawaya is a 46-year-old monk living in Htigyaing, a town in northern Myanmar. When he developed a persistent cough in July, a volunteer working with The Union’s Challenge TB team was there to assist.

“In July 2018, I suffered a cough for more than a month and had a fever every evening for a week. I also struggled with a loss of appetite, became weak and thin, and my skin turned dry and dark. I began to think I was malnourished.  It was around that time that one of the volunteers from The Union’s Challenge TB project, Ma Moe Moe Win, came and shared information about TB disease at our monastery,” says Sandawaya.

It would be a start of his journey from diagnosis – of tuberculosis (TB) infection – to community advocate.

“I’d never been touched with tuberculosis, although sometimes I used to hear this word ‘TB’ in the hospital.  I didn’t know what it meant. When Moe Moe persuaded me to undergo TB screening, I agreed, but I never thought that I would actually receive a TB diagnosis.”

Moe Moe collected Sandawaya’s sputum specimens for testing and assisted him with transport to the Htigyaing Township Health Center for a chest X-ray and other tests.

“When I was diagnosed with TB in August 2018, I had to begin treatment as prescribed for six months. I was very frustrated, but Moe Moe explained what to do and encouraged me. She described how other patients got better and were cured after taking medicines. Then, the news of having drug-resistant TB came to me after one week. This shocked and worried me and I became bitter about how things were happening.

“People in the village were scared of my disease, stayed away from me and even my close friends wanted me to stay outside of the village. Local authorities suspected me as the source spreading the disease to people around me. Sometimes the stigma hurt worse than the symptoms.”

Stigma, such as that experienced by Sandawaya, is common among people in treatment for TB, as misinformation and fear around the disease abounds in many communities. To challenge this, The Union Office in Myanmar conducts information sessions on TB to help combat the fears that often lead to stigmatising behaviours and encourage people showing TB symptoms to go for testing and treatment. Volunteers help transport sputum samples, provide information about available services and serve as a support system to patients.

Sandawaya’s community has since rallied around him to support him through treatment. To further support his recovery, he receives nutritional support and care from the Community Based MDR-TB Care Project, a Union programme supported by the Global Fund.  

“The healthcare providers and the Challenge TB team helped guide me and provided coping skills to handle the stigma and to overcome challenges. I believe that if they were not there to help me, I would not be here today receiving treatment and care”, says Sandawaya.

Sandawaya, currently on his sixth month of treatment and regaining strength, now serves as an example to his community that TB is curable. He uses the influence of his position as a monk in the community to share his new knowledge about TB and spread awareness.

The Union implements the United States Agency for International Development’s Challenge TB project in Myanmar. The project conducts active case finding and delivers health education sessions in the remote Saggaing Region, in collaboration with the National TB Programme. Through a network of nearly 900 community volunteers like Moe Moe, and by partnering with local health NGOs, The Union helped 2,158 people obtain a TB diagnoses in 2018.