How Heroes are Fighting Tuberculosis in Burma — and Winning
After 20 months of treatment, one man is cured. Equipped with U.S. technology, he is now a peer counselor helping other patients.
Sa Aung Win was 32 when he first noticed the fever. Then the headache. Then he started coughing up blood. After 20 months of treatment for multidrug-resistant tuberculosis (MDR-TB) — during which he had to take 14,000 pills — Sa Aung Win is now TB-free.
Crucial to his recovery were regular visits by peer counselors — individuals who fought their own TB infection and won. These counselors are part of a network supported by USAID, FHI 360 and the Government of Burma.
Sa Aung Win knew that when he defeated the disease, he wanted to help others do the same.
“The most common complaint from TB patients is that they do not want to take the TB drugs,” Sa Aung Win said. “They do not want to suffer the side effects of loss of appetite, nausea, joint pain, dizziness and hearing loss.”
“I visit them and tell them that I had the same symptoms when I was taking the TB drugs, but I never gave up and continued the treatment.
They believe TB is incurable and they feel hopeless and depressed.
However, when they see me, they realize their disease can be cured.” — Sa Aung Win
The married father of two earns no salary for his work as a peer counselor and typically visits six TB patients a week. The peer counselors use mobile phones pre-loaded with videos that show TB patients how to take their medicine. The phones are also equipped with a system for volunteers to upload visit reports noting each patient’s condition and progress.
Sa Aung Win is supported by his family and neighbors, who also play a vital role in combating TB.
“My whole family helps me help others fight the disease. My neighbors direct suspected TB patients to me. I take them to the hospital to get tested and encourage them to take their medicine.” — Sa Aung Win
An approach that harnesses the community is crucial in Burma, a country the size of Texas with 54 million residents. Despite its large area and population, and although MDR-TB is the most deadly infectious disease in the world, Burma has just two dedicated TB hospitals.
The World Health Organization estimates there were 9,000 new MDR-TB cases in 2015 in Burma, with more than two-thirds going undetected. The peer counselors are on the front lines of this battle and are helping to close this gap. And once they have succeeded in identifying and referring potential TB cases for diagnosis and treatment, U.S. technology is helping save lives.
Rapid testing machines from California-based company Cepheid are dramatically slashing TB testing times. Before the U.S. Government and other funders donated the GeneXpert machines, some of which are solar-powered, it took up to 90 days for patients to receive their TB test results — meaning they could unknowingly spread the airborne disease while they waited. Now testing takes less than two hours.
USAID is helping the Government of Burma expand its TB detection capabilities through enhanced laboratory testing and faster transportation of samples. The government plans to deploy portable, lightweight GeneXpert machines that health workers and volunteers can take to remote villages so individuals need not travel long distances to obtain a TB test.
A GeneXpert machine diagnosed Kyaw Swar Win’s MDR-TB, giving her a jumpstart on the required 20 months of treatment. She was thin and clearly unwell when I met her last June in a USAID-supported TB hospital on the outskirts of Rangoon, Burma’s largest city. Although she had just begun treatment and was suffering from side effects, she patiently answered my questions, sitting quietly on her bed.
It was brutally hot and humid. Stray dogs wandered in and out of the patients’ open-air rooms, tracking in mud from the courtyard. Each of the 10 rooms in the MDR-TB/HIV co-infection ward was sparsely furnished with an ancient-looking metal bed frame, a thin mattress and a small nightstand.
Kyaw Swar Win, 32, is also battling HIV, for which she has been making the 16-hour round-trip journey from her hometown to Rangoon for the last five years to receive treatment. As a gay man who identifies as female, she faces stigma and discrimination from her neighbors.
“They say I am suffering from these diseases because I am gay and do not behave like a real man,” Kyaw Swar Win said. “However, my aunt understands all my sufferings and she does not have any such stigma against me. Because of her understanding and support, I have been able to recover.”
Although Kyaw Swar Win is still undergoing treatment and cannot officially serve as a peer counselor, she is finding ways to support others fighting TB.
“During my visits to the clinic to receive the anti-HIV drugs, I have helped TB patients whom I have met in the clinic,” she said.
“They did not have much knowledge on where to get treatment and support, so I directed them where to go.” — Kyaw Swar Win
USAID’s staff in Burma spoke with Kyaw Swar Win three months after our initial meeting and found her in better health.
“I am putting all my effort into undergoing treatment. I am feeling better and have gained a lot of weight. I now want to dress up, wear makeup, and be pretty again.”
Myint Myint Kyu from USAID/Burma contributed to this story.
About the Author
Matt Grieger is the Deputy Team Leader for Outreach and Communications in USAID’s Asia Bureau.
