We Cannot Cure TB Without Curing TB Stigma
30 October 2024
In 2021, I lost a close friend to tuberculosis (TB), the world’s most lethal infection. But I cannot say anything else about this friend, where I met him or when we became close.
The stigma surrounding tuberculosis is too impenetrable and, unfortunately, it would not be fair to my friend’s family. Still, for me, his recent death highlights the threat this disease poses, not only to the millions of people living with TB, but to their friends and family members globally.
Growing up in Pantnagar, a university town in North India, we were familiar with TB and other diseases including cholera, dengue, malaria, and typhoid fever. All of them were unfortunate. But it is only TB that we shy away from talking about, even when someone we know contracts the disease. We keep pretending that it doesn’t exist – despite all evidence to the contrary.
Updated TB numbers show progress is needed
According to the World Health Organization’s latest report, TB kills more than one million people annually, more than any other infectious disease. Every year, an estimated 10.8 million people contract the disease, but in 2023 only 8.2 million people were diagnosed, according to the World Health Organization’s 2024 TB report, released Tuesday.
Millions of people are sick but either cannot or will not seek medical help. Stigma is likely one of the reasons why; too many times, it gets in the way of preventing and treating TB. This stigma has nothing to do with whether people are underprivileged or poor or are well off and live in good places. TB is simply considered something that shouldn’t be discussed.
The WHO report shows that we have not seen significant improvements in how many people contracted the disease in 2023, how many people died from the disease, where the hardest-hit locations can be found.
Stigma is an issue globally, in too many settings – from Nepal to South Africa, and most everywhere else. Up to 75% or more of TB patients experience stigma, with impacts ranging from delays in seeking out a diagnosis and treatment to patients ignoring preventive measures like masks that can help curb the spread of the disease.
On a personal level, TB is a health and financial crisis
Compounding matters, the economic damage caused by TB magnifies the harms of TB stigma. WHO has estimated that half of TB patients and their families experience a catastrophic impact on their household income, along with the declining health of a family member, for at least half a year. In this context, the stigma hits very hard: family budgets shrink as expenses increase, while everyone copes with a health crisis that no one can discuss.
India’s plan is to eliminate TB by 2025 and the global plan is to eliminate it by 2030. To reach these goals, we need to be bold in conversations. It’s not just about finding a cure, we must work on social stigmas. India, for example, is a very populous country. To achieve its goals, the government maintains an online data center that tracks TB statistics, but stigma persists. The trains are crowded, the cities are congested, it only takes one person to ignore their symptoms and spread the disease.
Outreach and patient empowerment can shrink stigma
To address the stigma and enable conversations, we need stronger patient education and support initiatives so that those who have TB can be empowered as they navigate a life-threatening illness.
Examples of this programming include the “TB clubs” in Ethiopia and Nicaragua where small groups of patients meet regularly and help each other get through the six-month treatment process. These groups reduce the social isolation that patients so often experience, which then helps alleviate the disease stigma. Patients have also asked for community engagement that provides safe spaces for people affected by TB to share their experiences and advocate for changing the social norms that reinforce stigma.
Outreach efforts that focus on TB healthcare workers are also important, as how they talk about the disease with patients and families can help alleviate some of the stigma that they experience—and TB healthcare workers also face TB stigma from those whose practices do not include TB. Helping to ease this stigma aids their patients as well.
These initiatives to reduce stigma stand out because too few have been put into practice. But as long as a strong social stigma remains attached to TB, it will be difficult to gain traction against this disease. Scientific breakthroughs in prevention and treatment will have limited value if people will not go near them.
The WHO’s plan to end TB by 2030 includes improving diagnosis and treatment services and taking advantage of current technologies, especially those that can help curb the spread of drug-resistant strains of TB, but we also need to start having the difficult discussions to address stigma.
We can develop new ways to prevent and treat the disease, but unless we include programming that encourages openness, we are only fighting half the battle.
By Neelima Sharma
Neelima Sharma, PhD, is a Senior Toxicologist at the Bill & Melinda Gates Medical Research Institute
Source: Health Policy Watch
