Patient thanks her lucky stars for medical innovation

By Advertorial | Aug 25, 2016 | COMMENTS [ 1 ]

Doctor becomes patient after contracting multidrug-resistant TB at a hospital

“I would be deaf if it wasn’t for the continuous research and development of innovative medications,” says Dalene von Delft.

Being a medical doctor herself, Von Delft was in the right place at the right time, knowing the inner workings of medical treatment, but not all are so lucky. The flip side is that doctors are continuously exposed to their patients’ infections and consequently have an occupational risk of contracting life-threatening diseases. In South Africa, healthcare workers are six times more likely to contract multidrug-resistant tuberculosis (MDR-TB) than the general population.

Medical research and development of treatments for such chronic diseases as diabetes will be a central theme at the Ipasa Innovative Medicines Summit being held on September 1. The Innovative Pharmaceutical Association South Africa (Ipasa) is a voluntary trade association that represents a diverse group of 25 leading pharmaceutical companies dedicated to exploring, developing and bringing innovative, quality medicines to the South African market.

Von Delft qualified as a medical doctor at the University of Stellenbosch in 2006. After two years’ internship in the Eastern Cape and a year of community service in Paarl, she worked as a medical officer for the department of paediatrics at Tygerberg Hospital in Cape Town in 2010. Her dreams of becoming a paediatric surgeon were seemingly shattered when she was diagnosed with primary MDR-TB on Christmas Eve of 2010.

She hadn’t been feeling particularly ill and had little more than a persistent dry cough, but a fellow doctor insisted she have it X-rayed. The results were worse than she could have feared: though young, healthy and fit, she had contracted MDR-TB. What followed was a harrowing 19 months of treatment, during which she had to make some potentially life-threatening decisions in an attempt to preserve her hearing and career.

While she wasn’t feeling unwell at that stage, the treatment itself – such as existed for this drug-resistant ailment – was about to change her life. The TB strain was resistant to three of the four front-line medications then available.

“I was hospitalised and put on seven different medications, but these were 40-year-old drugs that had a less than 50% cure rate for MDR-TB patients. Notwithstanding having access to the best care, the treatments were effectively useless. These drugs are toxic and cause side effects that include severe nausea and vomiting, hair loss and irreversible hearing loss,” explains Von Delft.

The latter causes long-term disability, but as the drug was also one of the two most effective drugs in the regimen, she had to continue with it, and consequently permanently lost some of her high-frequency hearing.

New treatment

Through her medical network, Von Delft was fortuitously made aware of a powerful new drug – the first new TB drug in 42 years – that was still undergoing clinical trial, and therefore not yet available to the public. She was able to make use of bedaquiline (by Janssen) on South Africa’s short-lived 2011 compassionate use programme – one of only four people to do so before the programme was withdrawn.

Although she was fully aware of the risks associated with an unapproved medicine, she felt the small risk from the medication was outweighed by the high risk of losing her hearing and possibly her life. “Although it was proven that the drug was effective, it was not known if it was safe – there was a risk of death from heart stoppage.”

Nineteen months of treatment resolved the illness, though she continued having precautionary annual screening X-rays until recently and is now completely cured with no relapse.

She considers herself extremely fortunate to have recovered so well from this debilitating disease, but the vast majority of other MDR-TB patients are not nearly as lucky.

Von Delft says that several doctors within her family and network have similarly contracted TB, and as a result she became motivated to do something about it, both among student doctors and the wider population.

As a founding member of a non-profit advocacy group called TB Proof, she has subsequently become a motivated TB patient/physician advocate, campaigning for more effective, safer and equitable treatment options. TB Proof is 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 – the kind that happens in a hospital.

“There are many strains of TB and some are drug-resistant,” she says. “There is still a lot we don’t know about this disease. Medical practitioners are at high risk of contracting this life-threatening disease, yet we get no warning and little protective equipment. We advocate for protection and controls, and encourage everyone to get screened.”

Her advocacy work also involves various national and international platforms. She has been a member of the World Health Organisation’s Strategic and Technical Advisory Group for TB as well as the Global Drug-Resistant TB Initiative Core Group (Stop TB Partnership).

As an association, Ipasa aims to promote a sustainable environment for the pharmaceutical industry to invest in the research and development of innovative pharmaceuticals, contribute to a patient-centred health system and bring the benefits of breakthrough treatments to patients across South Africa.

About Ipasa

Ipasa is an association of 25 international and local pharmaceutical companies dedicated to researching and developing innovative medications, medical devices and diagnostic tools.

It promotes a sustainable environment for the innovative pharmaceutical industry in South Africa, committed to contributing towards a patient-centred health system benefiting from breakthrough treatments. By engaging all stakeholders in the healthcare system, Ipasa helps develop practical solutions to address the country’s most pressing healthcare challenges. For more information, visit Ipasa.co.za or follow the association on LinkedIn.

This content was paid for by Ipasa and does not involve Times Media journalists.

“Doctors are also human beings and TB can infect anyone” – reflections from a physician and survivor

Posted by ACTION Secretariat, Washington, D.C. on Apr 20, 2016  |

By Ifesinachi Sam-Emuwa

I have seen firsthand what individuals go through when they are diagnosed with TB in Nigeria. Aside the challenge of having to deal with the treatment and recovering process, they still deal with stigma and discrimination from friends, family and the community – even after they have started treatment and are no longer contagious. I work in the field of global health focusing on HIV/AIDS, TB, malaria and reproductive health and have had the chance to work in hard to reach communities in Nigeria, where there are several barriers preventing individuals from accessing healthcare such as distance to health facilities.  I have also witnessed how lack of adequate information promotes stigma. I recently had the chance to speak with an amazing young female physician from Malaysia; and this is how she recounted her journey from Multidrug Resistant Tuberculosis (MDR-TB) diagnosis to recovery.

Interview with Tiong Xun TingTiong_Pix.jpg

Tiong Xun Ting is a medical doctor from Sarawak, an area of Malaysia famous for its lush biodiversity, including thousands of species of orchids.

Tiong is a survivor of MDR-TB. She likely contracted the disease in Moscow, Russia, where she lived for a number of years during her medical training.  Like other medical personnel with TB (many of whom were brought together through the organization TB Proof) she was shocked at the diagnosis.

She is now fully recovered, and she is currently engaged in cardiovascular epidemiological research and hoping to pursue further studies in Public Health.

She came to Washington in April 2016 in order to speak about her experience at a meeting of the Critical Path to TB Drug Regimens (CPTR) initiative, and ACTION had a chance to interview her.

When did you find out you had MDR-TB? Were you scared?

I found out in August 2013 while working in Malaysia. I was having a productive cough, fever and night sweats. When I got the results, I was really shocked because in my country we have a lot of TB but it is mostly drug sensitive. During my medical studies we didn’t go into details on MDR-TB, so when I saw the diagnosis, I wondered how this could have happened me and I even cried. I knew the treatment for MDR-TB was longer, slower and with more side effects than of drug sensitive TB. So I was worried about my family, friends, and the people around me, since it is an infectious disease.

How did you manage to get treatment?

I was told that the Respiratory Physician would be the one to handle treatment. In my country, the treatment for any infectious diseases is free of charge, but my Respiratory Physician had to make sure that there were drugs available for the treatment.

How did friends and family react?

I’m very lucky because my friends and family were very supportive, they knew I got the disease so they also got tested and it was great news that they all tested negative to MDR-TB. They never isolated me, and they still visited me during the time I was undergoing the initial treatment and saw me every day all through the disease. Some patients were not as lucky as I was, they were isolated and thrown out of their houses by their family members and didn’t get as much support as I did.

What is it like being a doctor who gets the illness?

I became a medical doctor to help people and, at the end of the day, doctors are also human beings and TB doesn’t choose who it wants to infect, it infects whoever it likes. Secondly, because of the nature of our profession, we are exposed to all the patients that come to the health facility.

What was the treatment like?

My treatment was for 18 months, with a lot of side effects.  I was on very painful injections, and pills. Nausea and vomiting were very common during the treatment period.  I also had low blood sugar, plus insomnia which was quite bad. There were a lot of pills to take at once and some were very big.

How aware of TB are people in Malaysia?

The awareness of TB or MDR-TB is relatively low, and social stigma still exists especially in the villages. People hardly disclose their illness for fear of being stigmatized or ostracized. This has posed difficulty to curb the spread of TB, especially during TB contact tracing.

I think the issue of stigma can be stopped with proper education. When TB survivors share their stories, others are encouraged to speak up and also seek medical help, knowing that there’s treatment. In my case, when I was diagnosed of MDR-TB, some of my friends said actually their parents had suffered TB, but how come I never knew about my friends’ parents’ TB status? This is why there is a huge need to mobilize survivors to speak out about their journey with TB, this would really help in increasing awareness that would lead to stigma reduction.

What do you think the world should do to stop TB?

The world, irrespective of country, region or race should work together to fight TB. Infectious diseases know no borders and can travel widely.  We need to step up the fight against TB globally and also develop new vaccines and treatments. We have to conduct more research on how to make TB medications easier to take.  Maybe we could have combination pills or research to reduce the duration of treatment. It would be good for the sake of compliance.

Are there ways to prevent TB?

From the health care perspective, medical personnel need to wear proper protective equipment. And, everyone should know the symptoms and go for a TB test, and, if positive to TB, begin treatment as soon as possible so that it doesn’t spread to other people

Do you have any advice for people who are going through TB treatment?

They should know that the treatment they are undergoing will get rid of the TB, so adherence to treatment is important if they want to see that happen. The treatment may seem long but at the end of the day, you will feel good about yourself.

 

Top 100 Inspiring and Aspiring young South Africans- Independent Media

“In September 2012 Dr Bart Willems swam four and a half laps of the Long Street pool in Cape Town entirely under water. When he surfaced, he’d covered a distance of 114m and broken the South African freediving record. His feat was made extra special by the fact that he’d recovered from tuberculosis (TB) just five years earlier.”
– Independent Media “Top 100 Inspiring and Aspiring young South Africans”

 

Bart

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

Unmask stigma – wear a mask and help to fight the stigma attached to TB

Monday 20 July 2015 08:08

“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 . . .

Mandisa Matross

Worcester