Voices of TB: Learning from Tuberculosis Survivors

Voices of TB: Learning from Tuberculosis Survivors

Voices of TB participants (from left): David Rochkind (moderator); Rachel Urduno (Mexico/Texas); Andre Gariseb (Namibia); Pham Thu Hoa (Vietnam); Francis Apina (Kenya); Rosalie and Faith Stephson (Philippines/Texas); Endalkachew Fekadu Demmisse (Ethiopia). {Photo credit: Claire Moodie/MSH.}Photo credit: Claire Moodie/MSH.

Cross-posted on TB-CARE I.

World TB Day, March 24th, was commemorated in many countries around the world last week to acknowledge the accomplishments made in the fight against tuberculosis (TB), and to call attention to the work that still needs to be done.

Voices of TB, a unique event organized by USAID, featured former TB patients speaking about their personal fight against TB. Survivors of TB from Ethiopia, Kenya, Namibia and Vietnam --- four TB CARE I-supported countries --- and from the United States, spoke at the event on March 22 in Washington, D.C.

USAID's TB CARE I, led by KNCV Tuberculosis Foundation, is implemented with several partnering organizations, including the American Thoracic Society, FHI 360, International Union Against Tuberculosis and Lung Disease, Japan Anti-Tuberculosis Association, the World Health Organization, and Management Sciences for Health (MSH).

Each participant told their emotional story of fighting, and beating, TB.

Francis Apina from Kenya talked about his battle with both TB and HIV and the importance of U.S. Government support for integrated TB/HIV prevention programs. “If The Global Fund, PEPFAR and USAID close up shop, I think I [would] be dead in six months.”

Rosalie Stephson spoke on behalf of her 14-year-old daughter, Faith, who was first diagnosed with TB in the Philippines at the age of five. After immigrating to the US, 12-year-old Faith was again diagnosed with TB in her lymph nodes, which was causing major complications including hypertension. Although the family kept Faith’s illness a secret while undergoing treatment, they have since come forward to share their story to raise awareness of the disease, particularly among children.

Pham Thu Hoa, a 23-year-old from Vietnam, also spoke about her experience of getting TB twice and being cured successfully both times. She said she is lucky to live in a large city where treatment was available; most people in her country have to travel long distances to get proper TB diagnosis and treatment. Hoa said, “[in Vietnam we have] really good treatment results: about 90 percent of TB patients who are treated under [Directly Observed Treatment, Short course] DOTS are cured; but just 60 percent of [all] TB patients are diagnosed and receive treatment each year.”

Improving access to TB diagnostics, treatment and care was a common theme throughout the event.

The participants also emphasized the need to fight stigma surrounding TB. Namibian Andre Gariseb spoke of the stigma he faced as a TB patient in Namibia. “There is stigma attached to TB in Namibia, so much so that many TB survivors wouldn't talk about it," Gariseb said. "If people know the facts, we wouldn’t have the stigma.”

Endalkachew Fekadu Demmisse shared his particularly difficult fight with multi-drug resistant tuberculosis (MDR-TB). He was diagnosed with MDR-TB in 2005 before there was a system in Ethiopia to treat this complex and costly disease. He was fortunate to have the drugs to treat his illness, which cost over $200,000, and were donated by Compassion International, a U.S. non-profit organization. However, he had to endure over two years of treatment and numerous side effects from the many drugs. Although Ethiopia began treating MDR-TB patients in 2009, Demmisse expressed his concern that “there is a waiting list for TB medication for MDR-TB” in Ethiopia and many other countries.

There is still work to be done to improve the diagnosis and treatment of drug-resistant forms of TB.

The last TB survivor to share her story was Rachel Urduno from El Paso, Texas. After being misdiagnosed for three years with asthma, allergies and other conditions, she was finally properly diagnosed and treated for TB in 2007. She struggles with the thought that “I may have infected 15 people each of the three years that I was sick with TB.” She spoke eloquently and emotionally about how stigma and people’s lack of knowledge about TB can make a TB patient’s struggle with the disease lonely and difficult.

In addition to the Voices of TB panel discussion, the former TB patients participated in several World TB Day activities during their week-long visit to Washington DC. They attended congressional briefings on TB and visited congresspersons to share their experiences. These events were not only beneficial to the U.S. congressional staff, but also to the ex-TB patients. Each participant is going home more inspired to speak up against TB in their own country or state, determined to help reduce stigma and increase the diagnosis and treatment of tuberculosis.

As Gariseb said in his closing statement: “Spread awareness on TB; let’s not spread TB.”

Former TB patients (from left): Francis Apina (Kenya); Pham Thu Hoa (Vietnam); Andre Gariseb (Namibia); Endalkachew Fekadu Demmisse (Ethiopia). (Photo credit: E. F. Demmisse.)

Claire Moodie is monitoring & evaluation officer for MSH/TB CARE I. Representing TB CARE I, she helped coordinate the participation of TB survivors in the ‘Voices of TB’ event.