Tuberculosis (TB) remains to be one of the deadliest airborne diseases in the Philippines today as the country experiences the highest incidence rate in Asia.
To most people, getting proper TB treatment is the only solution to battle the TB disease. But for former TB patients, it’s more than just the treatments. Combating TB requires unity, action, and empowerment.
Having TB can be a heavy burden — from daily monitoring and medical support to social stigma and discrimination. This is why Survivor Advocates of the Department of Health’s (DOH) campaign, #TBFreePH, believe that these problems should not be faced alone. Having gone through the same experiences, they continue to show their support by sharing their stories of hope to empower TB patients to strive towards a TB-free life.
What it means to be a survivor advocate
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.
Her doctor then explained that her journey to recovery should be seen as a “miracle” since a person undergoing MTB could have resulted in a fatal incident since there were no existing cases locally at that time. After months of treatment and rehabilitation, a new opportunity came her way which was to use her past experiences as a sign of hope for the many battling TB.
Today, Louie continues to combat TB as the President of TBPeople Philippines Organization Inc. and a survivor advocate for the DOH’s, #TBFreePH campaign. Louie has been using her platform to educate and help those who do not fully monitor their treatment, individuals from far-flung communities with active TB, and patients who have both TB and existing disabilities.
“We want to create media engagements by making noise the right way to inform the public that there are a lot of TB cases in the Philippines including ones with existing disabilities. Doing community-based forums to inquire about TB should also be established and making sure government officials directly communicate that there is free TB medication so everyone can easily access it,” shared Louie.
With the looming effects of the pandemic, Louie believes the lockdowns contributed to the growing emotional distress of TB patients because of the lack of access to proper service from health care centers and hospitals. But with increased digital interactions, connecting to TB patients who seek answers and peer support was made easier. “We want to help out to those who are unreached. With everyone connected through social media, we are able to get more inquiries and refer them to TB facilities and health care providers.”
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.
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).
With the current pandemic, Malaya encourages active and former TB patients to speak up and empower themselves through their experiences and stories. “Like many people with TB, I had to conquer my fears. I was scared to let people know about my story. But being scared means being powerless. So I had to take control of my own life. Today, I am here to let people know what it really means to be TB-Free.”
The goal of pushing TB awareness may be a challenging road ahead but can be achievable with additional support from TB and non-TB Filipinos by supporting the National TB Control Program and overall #TBFreePH campaign of the DOH. The campaign is also supported by development partners like the United States Agency for International Development (USAID), World Health Organization (WHO), and the Global Fund against HIV, TB, and Malaria.
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.”
About TB Innovations and Health Systems Strengthening (TBIHSS)
TB Innovations and Health Systems Strengthening (TB Innovations) is a five-year project designed to bring a dynamic and strategic approach to accelerate the fight against tuberculosis (TB) in the Philippines and to institute health processes and systems that help the country achieve its targets for TB elimination by 2035. The project is funded by the U.S. Agency for International Development (USAID) to identify, develop, pilot and scale up game-changing, innovative technologies and approaches to assist the Philippines government in reaching national targets. FHI 360 will work closely with the National TB Program, USAID, USAID partners, the World Health Organization, the Global Fund and in-country stakeholders to achieve the broader vision and support the attainment of the Philippines Health Agenda.
TB Innovations has these objectives:
● Identify approaches to maximize case detection and health-seeking behavior
● Integrate and institutionalize practices to improve treatment adherence and quality of care
● Create a supportive environment encompassing the continuum of TB prevention to care