Cape Town - When Phumeza Tisile packs her bag for the World Health Assembly in Geneva next week, there will be an invisible item in her luggage: a passionate call to world health leaders to make way for better diagnostics and treatment for drug-resistant tuberculosis (DR-TB).
And to back her up? A manifesto carrying the signatures of more than 33 000 people.
Now 23 and permanently deaf from 18 harrowing months of treatment, the young woman from Khayelitsha is a committed TB activist who, together with her doctor Jennifer Hughes, drew up a manifesto in 2012 making an urgent call for funding and universal access to diagnosis and improved treatment for DR-TB sufferers across the world.
In 2010, she had just started studying human resource management at a local college when it became clear that she was losing an inordinate amount of weight.
That was the only symptom of an illness that she had.
Diagnosed with TB, she was put on treatment but just kept getting sicker and sicker.
“I’d heard about TB but never in a million years did it occur to me that I would be a patient,” she says.
This, it turned out, was just the beginning. What followed was a journey of long bouts in and out of hospital, an endless schedule of pills and injections, and the encroaching silence that took over as the deafness set in.
At one point, she was knocking on death’s door. Her doctor told her to call her priest. But Tisile survived, and she has now made it her life’s mission to lobby for affordable treatment and diagnostics.
“I’ll be delivering the manifesto in front of the world’s health leaders and governments,” she says, “and I really hope we achieve the demands that TB patients have all been struggling with for so many years.”
Tisile and Dr Hughes say that funding is critical to make sure that countries improve access to existing diagnosis and treatment of DR-TB and XDR-TB (extensively drug-resistant TB).
“I really want to be a voice for those patients who are no longer with us,” says Tisile, adding that she has made so many friends along the way in hospital, but that many of them are no longer alive.
She considers herself one of the “lucky patients” who was able to access proper treatment for XDR-TB through Doctors Without Borders (MSF), and was also treated close to her home in Khayelitsha.
For the more than half of patients with this condition in South Africa, the diagnostics and the right treatment options are not accessible, she says, adding that patent laws should be revised to make TB drugs more affordable. “One of the drugs I was taking called Linezolid costs over R700 per tablet per day (and I had to take this for over a year) – yet I know there are cheaper generic versions in places like India.”
As she prepares to travel overseas, she says, “It has been a hard journey but really worth it in the end. Having to beat XDR-TB with a 13 percent chance? That gives me the right to call myself a heroine!” - Cape Times