#UnmaskStigma

"A New Agenda: Lung Health Beyond 2015", The 46th Union World Conference on Lung Disease, Cape Town, South Africa. Photo shows: OFFICIAL PLENARY SESSION II: Tackling tuberculosis in key affected populations. Speaker: Phumeza Tisile, activist and the first South African survivor of XDR-TB. 'Defeating XDR-TB, disability and stigma: An ordinary call for extraordinary measures'. Photo ©Marcus Rose/The Union

“A New Agenda: Lung Health Beyond 2015”, The 46th Union World Conference on Lung Disease, Cape Town, South Africa. Photo shows: OFFICIAL PLENARY SESSION II: Tackling tuberculosis in key affected populations. Speaker: Phumeza Tisile, activist and the first South African survivor of XDR-TB. ‘Defeating XDR-TB, disability and stigma: An ordinary call for extraordinary measures’. Photo ©Marcus Rose/The Union

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"A New Agenda: Lung Health Beyond 2015", The 46th Union World Conference on Lung Disease, Cape Town, South Africa. Photo shows: OFFICIAL PLENARY SESSION II: Tackling tuberculosis in key affected populations. Phumeza Tisile, activist and the first South African survivor of XDR-TB. Photo ©Marcus Rose/The Union

“A New Agenda: Lung Health Beyond 2015”, The 46th Union World Conference on Lung Disease, Cape Town, South Africa. Photo shows: OFFICIAL PLENARY SESSION II: Tackling tuberculosis in key affected populations. Phumeza Tisile, activist and the first South African survivor of XDR-TB. Photo ©Marcus Rose/The Union

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Clinic staff feed TB patients

Deur JOLINE VAN DER MERWE AND ASHLI PRINS Maandag 20 Julie 2015 08:11

: Sr Sonja Lombard (left) and Myrtle Pietersen with Moses Mvunge, one of the patients who receive sandwiches before taking his medication. photo: joline van der merwe

Nursing staff at the Empilisweni Clinic in Zwelethemba are making sandwiches at their own cost to feed patients in the community.

Myrtle Pietersen, a staff nurse at the clinic who mainly works with patients with Tuberculosis (TB) explains that they had patients coming in for treatment who did not have anything to eat.

Some patients with severe TB have to drink up to 22 tablets at once while normal treatment requires them to drink six tablets.

“Some of our patients were constantly nauseous and after investigating, we found some of them were unemployed and had nothing to eat,” says Pietersen.

This prompted Pietersen and Sr Sonja Lombard to start making sandwiches for about 70 patients every day.

One of the patients, Moses Mvunge, says getting something to eat at the clinic has made a huge difference in his life.

“At times I felt so weak from the treatment I received and had nothing to eat,” Mvunge said.

The nursing staff says there is a need to feed even more patients and also assist weekly TB patients with food.

The project has also been added as one of the clinic’s activities for the Care Club initiative – a Department of Health (DOH) initiative to motivate staff to go the extra mile for their patients.

According to Jo-Anne Otto, spokesperson for the DOH says, TB is nothing to be ashamed about.

“Some of our staff members have also contracted TB while working with patients. It is important to know that it is treatable,” Otto said.

One of the nursing staff at Empilisweni Clinic, who wished to remain anonymous, is currently also receiving treatment.

She says having TB herself has been a real eye-opener because she can now identify with her patients.

Anyone who would like to assist the Empilisweni Clinic in supplying some of their patients with food can contact Joline van der Merwe at the Worcester Standard on 023 348 5111 or send an e-mail to info@worcesterstandard.com

Physician heal thyself, Q&A with Dr Dalene von Delft

 by: Nicci Botha | 17 Aug 2015 13:05

When Dalene von Delft started working as a doctor, she knew there were risks. But what she didn’t bargain for was contracting a life-threatening disease.
She contracted multi-drug-resistant TB (MDR TB), basically a strain of tuberculosis that is difficult to cure because it does not respond to most conventional treatments. The drugs themselves made von Delft desperately ill to the extent that she started to go deaf.

Multi-drug resistance is a condition where the micro-organisms, such as bacteria and viruses, that cause an illness have learned to outsmart the antibiotics used to treat them, mainly because the latter are being overprescribed. They develop into so-called superbugs.

Thanks to an experimental treatment – she recovered, and as a result founded TB Proof to campaign for protecting healthcare workers against such occupational hazards.

Dr Dalene von DelftDr Dalene von Delft

BizcommunityWhy did you become a doctor?

Dalene von Delft: I wanted to comfort those suffering for ill health. I longed to put a smile on their faces.

BizcommunityYou got a very scary strain of TB through your work. What happened?

Von Delft: On Christmas Eve of 2010, I got the bad news that I had contracted occupational MDR TB. Healthcare workers in South Africa are six times more likely than the general population to contract drug-resistant TB because of exposure in the workplace.

BizcommunityThe treatment sounded every more harrowing. Tell us about that.

Von Delft: What followed was 19 months of treatment, during which I had to make some potentially life-threatening decisions in an attempt to preserve my hearing and career.

I had optimal access to all forms of care, including the use of the first new TB drug in 42 years, bedaquiline, on South Africa’s short-lived 2011 compassionate use programme. I consider myself extremely fortunate to have recovered so well from this debilitating disease, but the vast majority of other DR TB patients are not nearly as lucky.

BizcommunityAs a result you started TB Proof. What does the organisation do?

Von Delft: I have subsequently become a very motivated TB patient/physician advocate, campaigning for more effective, safer and equitable treatment options. I am a founding member of TB Proof, an education and awareness community seeking to destigmatise all forms of TB and empower healthcare workers and students to protect themselves and their patients more effectively against nosocomial TB transmission.

My advocacy work involves various national and international platforms, including being a member of the WHO’s (World Health Organisation) Strategic and Technical Advisory Group for TB (STAG TB) as well as the Global Drug-Resistant TB Initiative Core Group (STOP TB Partnership).

BizcommunityYou’ve received recognition internationally and locally for your work.

Von Delft: In 2013, TB Proof was awarded the Center for Global Health and Diplomacy Award in recognition for Distinguished Work in the Field of Global Health.

I was also selected as one of the “Mail & Guardian” 200 Young South African Leaders in the same year, and received the Global Public Health Young Achiever Award – in recognition of Outstanding Contributions towards Global TB Control Efforts at the India International Public Health Conference in 2014.

BizcommunityWhat do you want to see the government do to protect doctors (and other healthcare workers) from occupation-acquired diseases?

Von Delft: There needs to be updated, standardised TB infection prevention and control policies (IPC) at all healthcare facilities, including training institutions. All people accessing these facilities should be covered, including workers, students, patients, volunteers and visitors, in line with International Labour Organisation workplace standards.

These policies need to be adhered to by infection control officers and/or committees tasked with implementation, which includes training and recruiting more occupational health practitioners and possibly the pooling of IPC, occupational health and quality assurance teams.

In terms of education, healthcare workers must know why IPC is critically important with an emphasis on rapid risk identification and reduction.

Monitoring and evaluation is critical and there must be documentation of IPC compliance as well as mandatory notification of all occupational TB cases in line with WHO requirements.

Workers also need to be educated about their rights and the COIDA (Compensation for Occupational Injuries and Disease Act) claims process streamlined to dramatically improve approval times. Workers eligible for compensation should include all those performing a facility- or community-based service which puts them at risk of TB exposure, including those without formal remuneration and/or employment contracts, such as students, volunteers and supernumerary healthcare workers.

BizcommunityWhat is your advice for people with drug-resistant TB?

Von Delft: Never forget that TB is a curable disease. We have TB Proof members that are XDR (extensively drug-resistant) TB survivors. Although it is difficult to complete treatment, if you stick to it you can get cured and live a normal healthy life again. Never be scared to test for TB – the earlier you get diagnosed, the better your outcome will be.

BizcommunityWhen you’re not working or campaigning for TB Proof, what do you like to do?

Von Delft: Working in the garden – especially pulling out the weeds, reading novels on rainy days and spending time with family and friends.

To find out more about the advocacy work Von Delft and her colleagues do, go to www.tbproof.org.

The fight of her life

The fight of her life

by Jamie Petersen on

In 2010 then 19-year-old Phumeza Tisile (19), from Port Elizabeth, was told she had tuberculosis. What she did not know was that she had contracted extensively drug-resistant TB (XDR-TB), the deadliest form of the disease. Tisile had been misdiagnosed and therefore given the wrong medication. As a result, she lost her hearing, because the drugs were so toxic, and had to have surgery to remove TB from a lung, which caused a broken rib and collapsed lung. By 2011 the treatment wasn’t working. Her life was saved when she met Jennifer Hughes, a TB doctor from Doctors Without Borders, at the Cape Town clinic she was being treated. Hughes created an individualised treatment regimen for Tisile, using linezolid (which isn’t developed to treat TB, but as an antibiotic to fight bacteria). Tisile was cured in 2013, and in the same year she and Hughes co-authored Test Me, Treat Me, a manifesto to help gain support from doctors and patients in the fight against XDR-TB. Tisile talks to us about the work she’s doing in her mission to help save lives.

“The reason we wrote the manifesto was to let the world health leaders know that extensively drug-resistant TB is an emergency.”

Phumeza Tisile

Calling all world health leaders

“The reason we wrote the manifesto was to let the world health leaders know that XDR-TB is an emergency,” says Tisile, who adds that the drugs currently used for XDR-TB are ancient and toxic. “They aren’t developing any new drugs. This is unfair.” The manifesto makes three commands: 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. In May last year Tisile took these demands to the World Health Assembly in Geneva, where global ministers of health had gathered to create a strategy for TB. Tisile says that though they got a lot of support, results will be slow. “It’s a 20-year strategy.” In the meantime Tisile continues to spread her message. “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.”

Marching for cheaper medication

In her three years with XDR-TB, Tisile made friends with many patients going through the same ordeal. “At the time there were 300 people who had XDR-TB and Doctors Without Borders managed to give linezolid to 20,” says Tisile. “It’s because of the patent laws; 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, says Tisile. “There’s a cheaper version in India. Apparently it costs R20 a tablet there.” In 2013 Tisile marched with health activists to the Department of Trade and Industry in Pretoria to hand over recommendations for a new draft policy on South Africa’s patent laws. “They still haven’t done anything, and it’s frustrating because people are dying.”

Phumeza Tisile at home in Khayelitsha two years ago on the day she celebrated her cure from XDR-TB.
Phumeza Tisile at home in Khayelitsha two years ago on the day she celebrated her cure from XDR-TB.

Advocating for TB patients

Phumeza is now 24 years old, and has her hearing back, thanks to two cochlear implants. She also joined TB Proof in February this year. “I am a core member. I attend consultations around South Africa, mainly in Johannesburg, and report back to the team. I also do advocacy work where I share my personal story with medical students and communities.” Being part of TB Proof has made her aware of the lack of education among healthcare workers. “I learnt that medical students, professional nurses and doctors don’t wear TB masks when attending to patients, because they fear their colleagues will see them as weak.” Tisile might be cured, but there’s a clearly a long fight ahead.

Mail&Guardian young 200. DR THATO MOSIDI, TB activist

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

Twitter: @thatomosidi