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Dr Thato Mosidi
Tuberculosis Activist

After her own difficult experience battling extremely drug-resistant tuberculosis (XDR-TB) and hearing the stories of what other TB patients and survivors had been through, medical doctor Thato Mosidi (29) realised she had an important role to play in the treatment of and education about TB in South Africa.

Realising that she was one of the fortunate handful of people to have survived this almost incurable condition, she felt she had to speak out for TB sufferers and advocate for the eradication of TB.

Herself a victim of TB stigma after her occupationally-acquired TB, Modisi believed that by using her status as a patient and a doctor and by sharing her story publically, she could start a social dialogue about the condition and help change how people view TB.

“South Africa has a very serious TB and HIV epidemic, and the combination of the two has created fear and misconceptions about the two conditions within our communities. The discrimination and stigma experienced by people with TB is one of the very powerful social determinants of disease that has contributed to the spread of the epidemic. “I believe if we start talking about it and educating people about the disease, we’ll be well on the way to eradicating it,” she says.

Modisi is a member of the South African National Aids Council’s Global Fund Country Co-ordinating Mechanism, representing the TB community in civil society. The CCM raises funds to assist developing nations in responding to the challenges of HIV and Aids, tuberculosis and malaria.

She is also a member of nongovernmental organisation TB Proof, a voluntary group formed by doctors, health care workers and medical students who have personal experience of occupationally-acquired TB, particularly drug-resistant forms of the disease. The group seeks to raise awareness about occupational, nosocomial (originating in hospital) and community-based TB transmission. It further educates health care workers and students on how to protect themselves from being infected with TB in the workplace.

“My greatest challenge is accepting that change will not happen overnight. We still have so much to do before we can rid the world of TB, and it will take hard work, many critical decisions and getting hands dirty to get the job done.”

— Linda Doke.

 

Phumeza Tisile
Tuberculosis Activist

“I didn’t decide to be an activist, it just happened; turns out I’m good at it and I enjoy it,” says 23-year-old Phumeza Tisile, whose blog on her struggles with multiple drug resistant tuberculosis (MDR-TB) and extremely drug resistant TB (XDR-TB) – and life thereafter – has helped many in South Africa.

“As much as it helps others who are going through treatment, I’m happy to help where I can. I still get personal messages on my Facebook page from people begging for better drugs.”

Born in the Eastern Cape, Tisile studied in Cape Town and was doing a human resources qualification when TB struck “with a huge bang”.

“It was in 2010, the time when South Africa hosted the World Cup. At first no one knew what was wrong with me, they assumed it was pneumonia, but instead of getting better I got worse.”

She was diagnosed with ordinary TB, then MDR-TB (the complicated drug regimen includes a daily injection which can, and in her case did, cause deafness as a side effect).

The nightmare grew into a two-year battle as she was then diagnosed with XDR-TB. Medecins sans Frontieres (Doctors Without Borders) was able to assist the young woman with a vital drug to beat XDR; winning that fight is something she characterises as a “huge achievement”.

Tisile started blogging while at the TB Care Centre. “Many people wanted to give up, but when they read my blog they saw that I had had it worse and their problems are a drop in the ocean. It’s a spirit-lifter when you know someone out there cares.”

In 2012, Tisile and MSF doctor Jennifer Hughes co-authored the ‘DR-TB Manifesto’, which explains the terrible situation facing people with drug resistant TB worldwide, and makes a call for: 1) universal access to diagnosis and treatment, 2) hugely improved treatment and 3) enough funding to achieve this.

In mid-May, Tisile headed for the World Health Assembly in Geneva to hand over the manifesto and ask governments, the World Health Organisation, major health role-players and the research community to prioritise the fight against drug-resistanty TB.

— Mandi Smallhorne.

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Dalene von Delft
Tuberculosis Activist

When 30-year-old Dalene von Delft was still a medical student she contracted multi-drug-resistant tuberculosis (MDR-TB), probably from constant exposure to patients with the disease, although she cannot be sure about that.

Von Delft, already facing the prospect of death, also began to lose her hearing. By the time she was taking 30 tablets a day she was swallowing back her own vomit to keep the pills down. The treatment was harder to bear than the disease and there was always the threat of sudden death as a side effect. It was then that she applied for compassionate access to a drug called Bedaquiline, which she saw as her only chance.

The drug cured her TB and now, as a full-time emergency-room doctor she uses her spare time to press for the drug to be made available to all TB sufferers. Along with her husband, and with some fellow MDR-TB sufferers, she founded a group called TB Proof. The group, which includes people who have been affected by TB, either themselves or through loved ones, does advocacy work locally and abroad, informing people about Bedaquiline and the need to make it available in South Africa.

Earlier this year, through USaid in Washington, DC, TB Proof was awarded the Centre for Global Health and Diplomacy Award for distinguished work in the field of global health diplomacy. Von Delft is a member of a growing global movement to bring MDR-TB into the media spotlight. The disease recently made the cover of Time magazine. In the meantime, Von Delft and TB Proof have been holding teaching sessions with most of the medical and allied health students at the universities of Stellenbosch (where she lives with her husband) and Cape Town, educating them about the risks of contracting TB and how to protect themselves.

— Ilham Rawoot

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