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 firstname.lastname@example.org
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 Delft|
Why 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.
You 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.
The 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.
As 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).
You’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.
What 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.
What 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.
When 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.
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.”
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.”
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.
DR THATO MOSIDI
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
“I’m dying Ma, the doctor confirmed that treatment is just not working for me and I’m getting sicker.”
The mother called her other daughters. This was not the first time they’d heard the treatment wasn’t working, but each time the doctors adjusted the medication and the family hoped she would get better.
It had been two and a half years of ups and downs. Death crept into their thoughts the minute doctors started responding to them with averted eyes. Doctors said the only reason she had lasted this long was that her disease was not complicated by HIV/Aids.
The Killer: Tuberculosis. Extensively Drug Resistant Tuberculosis (XDR TB). Extremely difficult to treat as it is resistant to the normal regimen used to treat TB, but it can be cured. “It can be cured” is the hope by which this family has lived and prayed, even as the odds stacked up. How does one begin the conversation about the impending death of a loved one?
A person with TB, especially the more drug-resistant types, is required to be isolated from the community while their medication reduces the number of TB germs in their system. Drug-resistant TB sufferers can spend as much as two years in hospital while undergoing treatment. They can no longer work. Their lives change dramatically.
I visited a friend at a TB hospital that has a special wing for XDR patients. What struck me to the core was seeing a body being removed from the ward. My friend saw my horrified expression and said: “That happens almost every other day – people dying and others waiting to die and I’m supposed to find the will to live with all this death around me.”
My friend also said that some of the patients escaped from the hospital as they could not take the isolation, the loneliness and the prospect that their way out would also be on a stretcher covered in a sheet.
A moral dilemma is presented to the families of patients: Do you inform those around this person that they are putting themselves at risk when exposed over time to the person with the disease? On the other hand a great number of people walk around with undiagnosed and untreated TB. That means we all walk around with an unseen risk of TB infection. Anybody is at risk of being infected but not everybody will necessarily be infected. The criteria for possible infection is simply breathing!
There is a campaign to de-stigmatise the wearing of the mask by TB sufferers. It is called Zero stigma/Unmask stigma. The slogan this year was “Behind the mask we are all the same”.
The campaign encourages the community to also wear the masks to normalise this practice so people with TB are not discriminated against.
Tuberculosis (TB) is a treatable infectious disease caused by a bacterium that spreads through the air we breathe. Every year 9 million people fall ill with TB. Three million of them don’t get the care they need and 1,3 million lose their lives. Stigma is a major contributing factor. Unseen, unfair and unforgiving” (unmaskstigma.org).
The challenge with the mask is that it attracts stigmatisation. Everybody will know that the person is possibly infected. One family I spoke to said they could not bring themselves to wear the masks around their loved one – it felt like they would reject, stigmatise and relegate them to feeling “unwanted”. They were well aware of the risk involved, but the emotional connection would not allow common sense to prevail.
TB is one of South Africa’s high stats contributors. As you count yourself lucky not to be a statistic, take a moment to think of the multiple sufferers, families and communities that live with this disease. Get educated about TB and support de-stigmatisation. Be the reassurance that a mask means protection.
The more you learn about TB, the less likely you are to discriminate. Infection could very well be in your next breath . . .
By Bailey White, CBC News Posted: May 25, 2015 5:03 AM NTLast Updated: May 25, 2015 5:03 AM NT
Tuberculosis in Nain doesn’t usually make news.
That’s not because it doesn’t exist — there have been 14 cases of TB in the small community since last October.
It’s precisely because TB is so common that it doesn’t make news. Compare that to St. John’s, when a student at Memorial University is diagnosed with TB there’s a media blitz. Not so in Labrador.
“It’s not new to us in the community,” Nain AngajukKak (Mayor) Joe Dicker said.
‘I just want to be on the safe side, right? I really don’t know much about this disease and just hearing so much about it makes me paranoid.’– Pauline Angnatok
And yet, the number of cases came as shock even to Dicker, who criticized Labrador-Grenfell Health.
“We as a community should be made aware so that we can take measures to protect ourselves,” he said.
“We have been providing a variety of education regarding the TB outbreak we had,” said Donnie Sampson, vice president of nursing at Labrador-Grenfell Health.
“Last week the medical officer of health did several media interviews to explain the outbreak and really try to reassure people that there was no cause for alarm.”
Call it a case of mixed messages.
It’s true the medical officer of health did speak to CBC’s Labrador Morning, but it was clear the number of cases was a worry.
“For one community, that’s quite a high number,” Dr. David Allison said. “It’s really a significant concern for us.”
‘Makes me paranoid’
It’s hard to understand from afar what’s going on in a town like Nain. I’ve never been there, I’m not part of the community, but over the past few weeks I’ve been calling people I know there and asking, “What’s the mood like? What do people think?”
A few people told me they would feel better if the whole town could be tested for TB. Fourteen cases is more than one per cent of the entire population. People said they wanted to know for sure they weren’t infected.
Pauline Angnatok called the local clinic and asked that her 12-year-old daughter be tested. Angnatok worried because her daughter had spent some time at a friend’s house, and later one of the friend’s relatives was diagnosed.
Angnatok says a staff member at the clinic told her to check back with her daughter’s friend to see if the family had been tested.
“I really didn’t want to go and ask the family … it would have been took rude,” Angnatok said.
“I just want to be on the safe side, right? I really don’t know much about this disease and just hearing so much about it makes me paranoid.”
Labrador-Grenfell Health says Angnatok doesn’t need to worry.
“It’s very difficult to contract TB. You have to have prolonged contact for quite an extended period of time with someone who is actively coughing and who is sick. It’s not easy to catch,” Sampson said.
“If you feel have been in contact with someone who might have TB, absolutely, still call your public health nurse, and they will take an assessment and identify a priority for you to be tested, and that’s how the procedure works for us.”
‘Afraid to come forward’
Difficult as it may be to catch, TB is also difficult to get rid of — both on the personal and community levels.
Anyone diagnosed with the disease will have to take antibiotics for between six to nine months. Eradicating the disease from an entire population takes much longer.
Pauline Angnatok’s concern highlights the need for more information, but there is a balance to strike. People get treated differently when they have TB. Some still believe the disease is a death sentence, and treat patients accordingly.
“Because of all the attention it gets, people are afraid to come forward,” said Dr. Allison. “The stigma around tuberculosis is significant and it’s worldwide. We have to be very conscious of trying to avoid that.”
Therein lies the challenge: to end TB, health officials need to talk about it relentlessly, even when the community is well aware that it exists.
Because if a community is shocked by the news, people panic. When people panic, they treat patients like outcasts. If patients are treated like outcasts, they don’t come forward until it’s too late.
A medical doctor from Stellenberg almost went deaf from TB medication after contracting the dreaded multi-drug resistant (MDR) strain of the disease.
Now she is advocating for cheaper, safer new antibiotics for TB treatment through TB Proof, the NGO she now works for.
“I didn’t lose my hearing completely,” Dr Dalene von Delft told TygerBurger.
“The TB medication that causes hearing loss is an antibiotic we use to treat MDR TB,” she said.
This strain of the bacteria causes the same disease as “regular” TB, but Dalene explains it is resistant to first-line antibiotics because it has become mutated.
Dalene contracted MDR TB through her work in 2010. Because the bacteria is airborne, inhaling it causes the majority (up to three quarters) of MDR cases in the country.
“We are currently using a very old regimen of medication with a very old combination of drugs for treating MDR TB,” she said.
This usually consists of six or seven different kinds of antibiotics – including a group of antibiotics called the aminoglycosides – used to treat different types of bacterial infections.
“These antibiotics are widely used; they are ‘old’ drugs which have been in use since the 1950s. It is still frequently used in hospitals, but for short periods, usually less than two weeks. In MDR TB one has to use it long term,” she said.
The World Health Organisation’s (WHO) guidelines recommended treatment with aminoglycosides for MDR TB for eight months, with total treatment lasting up to two years.
“Unfortunately one of the side-effects is hearing loss.” Some of the antibiotics from the aminoglycoside class most frequently used in South Africa are kanamycin and amikacin, Dalene said.
“Because these drugs are already 60 years old, their patents have long expired and they’re very cheap and made by different manufacturers,” she said.
“Yes, it comes with a warning that it could cause hearing loss, but it’s not like you can sue the drug company, because it is used ‘off-label’. This means the drug companies do not recommend long term use of these drugs for the treatment of MDR TB, but doctors are forced to use these drugs as there are no alternatives, and it is a deadly disease,” Dalene said.
The WHO recommends regular screening for hearing loss by means of audiograms,” she said, explaining this meant hearing at different frequencies and amplitudes.
“We don’t understand how it causes hearing loss, but it affects the nerve responsible for hearing – the cochlear nerve – and the outer hair cells which pick up high frequency tones, are affected first,” she said.
“Low tones still sound okay for patients, but they start struggling with consonants ‘f’, ‘s’, ‘k’, ‘p’, ‘t’. They might not pick up high soprano notes.
Studies estimate that about one third of MDR patients lose their hearing, Dalene said. And there are no alternatives.
“You either become deaf or dead. In most cases you cannot stop the old treatment even though you might lose your hearing.”
So when Dalene learnt these were her only two choices, she tried to access a new drug being tested in South Africa.
“I didn’t want to accept that. If I became deaf, I wouldn’t be able to listen to music or conversations anymore; I wouldn’t be able to practice as a doctor anymore,” she said. She spoke to people who have had cochlear implants, Dalene said, one of them a nurse who contracted MDR TB and had the implant done, but still had trouble using a stethoscope.
“I realised this was a career ending situation. Week after week it just got worse. My hearing deteriorated. Then I heard of a new drug – the first new TB drug in 40 years,” she said.
Janssen pharmaceuticals (part of Johnson andamp; Johnson) were doing clinical trials in Cape Town on a drug called Bedaquiline, offering a slim chance of hope.
“Treatment of MDR TB has been at a dead end until recently.”
She found out about the new drug and contacted the principal investigator and tried to get the drug available on compassionate use. “Sometimes they make new drugs available before the clinical trials are completed, seeing as these can take years and years. It already took about 25 years to develop Bedaquiline.
“We are very lucky. So far small studies suggest that this new drug is effective and there’s a chance it might replace the old drug,” she said