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.
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.
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.
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 Ting
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.