Standing up to stigma by supporting others with multi drug-resistant tuberculosis

Published: 24 March 2015 11:20 CET

By Kate Seymour

Siphokazi Kosopi suffered intense discrimination after she was diagnosed with multi-drug-resistant tuberculosis (MDR-TB). However, with the support of her family and the South African Red Cross Society, she has become an advocate for acceptance and a mentor to other MDR-TB patients in South Africa’s Eastern Cape.

When she first fell ill in 2013, Kosopi did not know what was wrong with her. She had no appetite, had diarrhoea and was losing weight. Her family took her to a hospital where she was admitted and put into an isolated room.

“There was a sign on my door that everyone coming in had to wear a face mask and gloves and I couldn’t understand why,” she said. “I was given pills and I didn’t know what they were for. Soon, people stopped entering my room altogether. My food and bathing water were put outside my door.”

After six months, Kosopi was transferred to a TB hospital, where she finally learned that she had MDR-TB, which develops when the bacteria that causes TB becomes resistant to at least two of the first-line TB drugs. It is curable, but takes longer and is more expensive to treat.

The South African Red Cross Society, with the support of the International Federation of Red Cross and Red Crescent Societies (IFRC) and funding from the United States Agency for International Development (USAID), has adopted a community-based approach to TB treatment in the Eastern Cape. This approach focuses not simply on the patient adhering to their drug regime, but on their overall wellbeing and social support system. Reducing the stigma that is often associated with MDR-TB is an important part of ensuring strong social support for patients.

“Community awareness of what MDR-TB is, and how it is spread is vital to ensuring that the community provides support and does not exclude those infected,” said Ruth Mufalali-van Rooyen, provincial health and care programmes manager at the South African Red Cross Society.

Kosopi found that social exclusion was a real problem when she returned to continue her drug treatment regime from home. One by one her friends disappeared, afraid of the disease that they did not understand. Only the support provided by her Red Cross community health workers enabled them to persevere with their daughter’s care and treatment.

“I told myself that if I let the disease get the best of me, I would die. I stopped paying attention to how others reacted towards me. I had my family and the Red Cross,” Kosopi said. “What touches me most about the Red Cross [health workers] is the way that they care for their patients. They come into a patient’s home and show love, making the patient feel like they are not alone.”

But it is also vital that patients take an active part in their recovery. “In the hospital, I would see people dying almost every other day and I feared that I would die too from a disease that I knew nothing about. But, with a group of other patients, I made a pact to own the disease and get better,” Kosopi said.