Fight against tuberculosis: Prioritizing COVID sets back years of progress

Four months of MDR-TB treatment left her deaf in both ears — a side effect of the injectable drug kanamycin, which is no longer recommended for use in treatment.

About a year after her first symptoms, she was finally diagnosed with extensively drug-resistant TB, the deadliest form of the disease. Tisile was told she had a 20% chance of surviving.

But she beat the odds. After receiving two cochlear implants that allowed her to hear, Tisile returned to her studies. She graduated from Cape Town University at the end of 2020 with a degree in social sciences.

Now she is a TB advocate campaigning for less toxic treatments and educating people about the disease.

Access to treatment for the more complex cases of TB is another problem. A patient with regular TB can have someone at home go to the local clinic every day to pick up their medication for them.

But access to MDR-TB treatment varies depending on the country, Khan said.

"For MDR-TB it's a different story altogether. There is still a very centralized function in terms of care delivery — you still have patients coming long distances to centers in order to access treatment, access laboratory tests and having to pay for costs as well," said Khan.

Letting go of shame

When Tisile was in the TB hospital she didn't experience any discrimination, but when she went to the general hospital wearing a mask, she was treated differently.

"You could tell that other people are against you without even saying a word," Tisile said.
Working with TB patients also puts health-care workers at risk of infection. Khan was recently cured of ocular TB, a rare form of TB found outside of the lungs.

Going through the treatment has helped her understand what the TB patients she works with go through. She took medication every day for a year, which caused moderate pain in her joints.

Also read: President Jokowi Warns About Continuing Danger of TB to Indonesia 

The lessons learned from COVID can be applied to TB, said Tisile, especially when it comes to mask wearing.

"Patients who had TB were so embarrassed to wear masks in clinics and hospitals because they were so afraid of being judged and stigmatized," Tisile said.

She believes that people should not be ashamed of having TB and that everyone who speaks up makes it easier for the next person.

"I still don't get the part where people see TB as not such an important disease," said Tisile. "I know it's been labeled as a 'poor man's disease’ but the fact remains that anyone who breathes, anyone who's alive, can actually get TB."