Phumeza Tisile knows the struggles of being infected with XDR-TB and wants to make sure no other suffers from it. (Image: Doctors Without Borders)
Proper diagnosis of disease is critical as this gives the framework for the treatment and medication needed. A wrong diagnosis can be fatal; thankfully for Phumeza Tisile, it was not.
Tisile was only 19 years old in 2010 when she was diagnosed with tuberculosis (TB). She was, however, misdiagnosed: in reality, she was ill with extensively drug-resistant TB (XDR-TB), the deadliest form of the disease.
Sufferers of XDR-TB go through an excruciating two-year journey during which time they must swallow up to 20 pills a day. They must also receive a painful injection every day for the first eight months, making it hard to sit or even lie down. For many, the treatment makes them feel sicker than the disease itself, as side effects cause nausea, body aches and rashes.
Because of her misdiagnosis, Tisile reacted badly to the drugs she was prescribed. She lost her hearing and had to have surgery on her lungs.
Her lifeline came in the form of Jennifer Hughes, a TB doctor from Doctors Without Borders, at the Cape Town clinic where she was being treated. Following their chance encounter, Hughes drew up an individualised treatment regimen for the young woman.
Linezolid was part of her treatment. Linezolid was not developed to treat TB specifically; rather it is an antibiotic used for the treatment of serious infections caused by Gram-positive bacteria that are resistant to other antibiotics. The main uses are to fight infections of the skin and pneumonia, and because of patent issues it is very expensive.
Tisile was cured in 2013, but she began her fight against disease by writing a manifesto – with the support of Hughes – to get support from doctors and patients in overcoming XDR-TB.
THE MANIFESTO
Test Me Treat Me, Tisile’s manifesto, calls for three things in particular:
- Everyone must have access to testing and treatment for XDR-TB;
- There needs to be better treatment and higher cure rates; and,
- The international community must fund the fight against XDR-TB.
Tisile told Redbull Amaphiko, a collaborative platform for social entrepreneurs who want to bring change to the world: “The reason we wrote the manifesto was to let the world health leaders know that XDR-TB was an emergency.”
After presenting it to the World Health Assembly in Geneva in May 2014, she described it as a “20-year strategy”. “Besides handing over the manifesto, I did interviews with health journalists from Germany and wrote a blog on The Guardian. There were workshops organised by Doctors Without Borders where I spoke about my experience with TB,” said Tisile of her experience in Switzerland.
CHEAPER DRUGS THE SOLUTION
During her three years of treatment, Tisile was part of a privileged 20 out of 300 suffering from XDR-TB to be treated with Linezolid.
“It’s because of the patent laws,” she explained. “The drug is too expensive and people who need it the most can’t get it. I’ve met people who I called friends who have now died.”
Linezolid is sold at R700 a tablet, but Tisile says there is a cheaper version from India that costs R20 a tablet.
PREACHING THE CURE
Tisile, who is now 24 years old, lost her hearing as a result of the misdiagnosis, but since then has had two cochlear implants and has regained her hearing. Her journey to recovery has given her the opportunity to speak about her story to medical students and ordinary people as part of TB Proof.
TB Proof is a grassroots health care and TB survivor initiative founded in 2012 by South African Health Care Workers and Students after multiple personal experiences with occupational tuberculosis, particularly multidrug-resistant TB.
Since working with TB Proof, Tisile said, she had learnt that medical students, professional nurses and doctors did not wear TB masks when attending to patients because they feared their colleagues would see them as weak.
