What it means to be a survivor advocate

TB Survivor Advocate Louie Teng

Once an aspiring architect, Louie Teng recalled the biggest turning point in her life back in 2007 when she discovered she had extrapulmonary TB (EPTB) called Tuberculosis Meningitis (MTB). Regarded as a rare form of TB, Meningeal Tuberculosis affected her brain causing her to lose her eyesight in the process of treatment. For Louie, battling TB was one of the most difficult stages in her life, and losing her vision made it even worse. This led her to experience stages of depression, anxiety, and fear of discrimination from something that she considered to be an “old disease” which eventually progressed into a disability, resulting in double discrimination.

Stronger together and fighting as one

To address the growing concerns of TB amid the pandemic, other survivor advocates have also shared their voices in raising TB awareness in hopes that their collaborative efforts will strengthen the community even more. Some of these #TBFreePH advocates are Mark Agana and Malaya Relacion.

TB Survivor Advocates

Mark Agana continues to echo the voice of Filipino men to getting screened, tested, and treated for TB, as well as erasing all stereotypes of men having no weaknesses. He was diagnosed with Pulmonary Tuberculosis (PTB) back in 2014 and considered himself to be a very healthy and athletic person. Like the majority of TB patients, Mark did not take the necessary precaution with TB treatment, and instead, he self-medicated which resulted in reactivation of TB in 2016.

He highlights that anyone is vulnerable to getting infected with TB, people who are active in sports and live a healthy lifestyle can also acquire it when exposed to the bacteria. After listening to different TB stories from other patients during his incubation period, Mark started to blame himself for not getting the necessary TB treatment sooner since getting TB once was already difficult but twice was too much.

For fellow survivor advocate Malaya Relacion, one of the biggest issues for TB in the Philippines is the lack of initiatives towards faster and more efficient TB detection processes. Back in 2012, Malaya worked for a non-government organization (NGO) where she visited various remote areas. After a series of unexplained fevers and chronic coughing, it was later revealed that she had pulmonary tuberculosis (PTB).

For the survivor advocates of #TBFreePH, direct messaging from these TB programs will help solve the current issue of Filipino TB patients not seeking proper treatment, “We just want people to listen. Filipinos are just looking for direct intervention, complete with a lot of these programs and proper messaging like for example, we have to be clear and concise with the six-month medication, not just two,” emphasized Louie, who meets and listens to stories of currently treating patients via the #TBFreePH Facebook community page. “Through this, we can enable the first step to getting back on track and reaching the ultimate goal which is finding and treating 2.5 million Filipinos by 2022.”