Now is the time to end TB and its stigma

The university said I had to stop attending my classes when I was diagnosed with TB,” said Fernan, a college student in Manila, fighting back tears as he painfully recalled his personal experience with the disease. He was diagnosed with drug-resistant tuberculosis (TB), which would take years to treat. And, as he had experienced, people’s reactions to the disease can be just as bad as the disease itself.

Fernan is not alone in experiencing the medical and social impacts of TB. Despite the fact that TB is a treatable disease, around 1 million Filipinos are infected with it, and an estimated 60 people die daily from the illness. Alongside health care system factors and the nature of the disease, stigma and discrimination continue to mar national efforts to end TB.

To be fair, the Department of Health (DOH) regularly runs initiatives aimed at reducing negative attitudes and behavior regarding tuberculosis. And some of our medical colleagues note that TB stigma, defined as a mark of disgrace which is associated with a given circumstance, “is not as bad as it used to be.”

However, as the recent National TB Prevalence Survey (DOH, 2017) shows, misconceptions about TB persist. Patients’ narratives, as one of us found (Evangelista, 2016), are depressing: “… pinandidirihan ako… ” (people find me repulsive); “… nangingilag sa akin… ” (people reject me); or “… natatakot sila sa akin…” (people are afraid of me). These accounts are validated by population surveys showing that 40 percent of respondents are unwilling to work with someone who was previously treated for TB.

Very likely, it is the shame associated with TB that has led patients and doctors alike to couch it in terms that are easier to discuss. Thus, some patients would refer to their illness as “weak lungs” and label their medicines as “bitamina sa baga” (vitamins for the lungs). In the 1990s, the medical anthropologist Mark Nichter found that these euphemisms—now abandoned by physicians but still used by patients and their families—can have the effect of trivializing the illness, increasing self-medication practices and undermining efforts to secure patient adherence.

The shame of possibly having TB is so strong that many do not even take the first step to get themselves checked for the illness. In light of the latest prevalence survey of the DOH (2016) showing that up to 41 percent of those with TB symptoms (e.g. cough, fever) did not take any action, this suggests that stigma continues to have grave public health consequences, which are made more salient given the national rise of  human immunodeficiency virus (or HIV, an even more stigmatized illness) and the consequent rise of TB-HIV coinfections.

Given the situation, there is a need to fully and thoroughly understand people’s perceptions of TB. What are their fears about the illness—as well as the treatment, which takes a minimum of six months? These perceptions, in turn, should be used to design communications efforts at the local and national levels, using barangay health workers as educators as well as mobilizing mainstream and social media. In this vein, the recent #EndTBNowNa ad with celebrities saying “TB is curable and treatment is free” is most welcome; this and related efforts need to be sustained and scaled up.

Of course, only by stopping the disease itself can we ultimately end the stigma; the two go hand in hand. Toward this end, we urge the DOH and other government agencies to redouble their efforts on all fronts, from guaranteeing the availability of medications to reaching marginalized communities and achieving genuine multisectoral collaboration as called for by Republic Act No. 10767. Simply put, we need political and technical leadership to respond to what should be rightfully recognized as a public health emergency.

Indeed, the present situation is untenable. In this day and age, no one should have to die of TB—or suffer its medical and social consequences.

Mary Ann Evangelista, MD, is a public health practitioner and program manager at Hivos SEA, a nonprofit organization, where she works on improving access to HIV and TB care. Gideon Lasco, MD, Ph.D., is an Inquirer columnist, medical anthropologist and advocate of equity in health.