The youngest of 3 sisters, Ingrid Schoeman grew up in Pretoria and later started working as a dietician in a government hospital in Port Elizabeth in Eastern Cape Province of South Africa. She especially enjoys working in children’s wards in hospitals as part of her dietician’s job. But the year 2012 nearly shattered her happy and peaceful existence.
She had a harrowing experience as TB struck her like a massive wave. But she rallied back and stood up to not only defeat TB, but also inspire others who are battling this disease.
One night in 2012, while on duty in the hospital, she developed high fever and a very rapid heartbeat - pulse rate was 160 - and pain in her chest. At first the doctors thought that it was some severe form of pneumonia, because the chest X-Ray did not look like one of TB. But when she did not respond to pneumonia treatment, a lung biopsy was done that confirmed pre-Extensively Drug-Resistant TB (XDR-TB).
The toxic TB medication almost killed her
Ingrid immediately sought treatment in a private hospital. But the medication that eventually saved her life from TB, almost killed her. During her treatment she not only suffered physical pain - the injections were painful - but was also bedridden for a long period of time. Hers was a case of direct transmission of a severe form of drug resistant TB. Moreover, the medicines affected her liver.
"I developed liver failure due to side effects of the anti-TB drugs. My abdomen swelled and I looked 8 months pregnant. I was in hospital for 75 days, out of which 30 days were spent in the ICU. I even slipped into a coma for a few days. It was nothing short of a miracle that I recovered, thanks to my excellent doctor (Dr David Stickells) and all the support I got from my family and friends. Apart from being a brilliant physician, Dr Stickells was very caring and gave me a lot of moral support. On days when I was very down or crying, he would just come and sit beside me, despite his very busy schedule."
Patient-centric approach does work
Ingrid took a long time to recover. She had to undergo physiotherapy, as the disease, as well as the medication, had left her very weak, and unable to walk beyond a few steps at a time. Even though she had lost a lot of muscle, she had no appetite and barely managed to drink supplements.
Ingrid wants health systems to be patient centric, which means that people should have access to new drugs and treatment regimens, with dignity. There is need to explore the use of newer and less toxic drugs. But it is not only about having new treatments and diagnostic tools - it is also about countries being ready to roll them out quickly once they are there and people being informed that they are available.
"I had access to the latest drugs and I survived. But what about those who do not have access to quality care and treatment? Also, I had tremendous support from my family, friends, doctors, and nursing staff. How do the majority of TB patients, who do not have the kind of support that I had, manage to get through TB treatment?" wonders Ingrid.
Shorter+safer treatment regimens are the need of the hour
“At the end of the day, newer, safer and shorter TB treatments and their availability to all those in need of them are necessary. There should be enough communication so that a person with TB knows about the latest drugs available and be able to make an informed choice. This decision-making process on the patient’s part also involves knowledge about the side effects of drugs. Health systems must keep the patient in mind and be able to offer quality TB care to all those who need it. This includes not only treatment, but nutrition and psychological support also” said Ingrid to Citizen News Service (CNS).
After completing her treatment Ingrid became a TB advocate and activist. She joined TB Proof - South Africa’s leading TB advocacy organization comprising a community of advocates and people affected by TB. Many of TB Proof’s core members are healthcare workers who, like Ingrid, developed occupational TB. One of the initiatives of TB Proof is ‘My patient’s choice pledge’.
Stigma and discrimination in TB still lurks...
Ingrid shared that, “At our last annual general meeting of TB Proof, some doctors said that they were stigmatised even by their own colleagues. A colleague from Mexico shared that it took 4 years for her to talk about her TB as she was ashamed of it—as if she had done something wrong to have got it. We must remember that TB can happen to anyone as it is in the air. It happened to me, it can happen to you”.
As per WHO, 4.1 million TB patients are not being reached by the health systems. Ingrid calls this a global ethical failure. She wants more TB champions who can openly talk about having got cured of TB and start conversations around TB at community forums and in schools. While making the TB community more aware and knowledgeable is necessary, engaging with people outside the TB community is equally important.
“We have to engage with policy makers, communities, our own friends and families and send out consistent messages and information based on scientific evidence to the people in a language and manner that they understand. It has to be a participatory approach; a top down approach cannot reach the people. All people should be treated equally and have a platform to share their personal experiences and stories”.
Ingrid calls upon governments to ensure that their actions reflect their promise of ending TB by 2030; to invest in research (that should reflect in a country’s budget) for newer and shorter treatment regimens with less toxic side effects; and to ensure that all TB patients get quality care and can make informed choices regarding TB treatment. Affected communities, general public and leaders will have to work together to end TB.
· Note: This story is based upon an exclusive interview given by TB survivor and activist Ingrid Schoeman to CNS (Citizen News Service) on the sidelines of WHO's first-ever Global Ministerial Conference “Ending TB in the Sustainable Development Era: A Multisectoral Response” held in Moscow in November 2017. We do hope such important voices from those fighting TB on the frontlines will inform the UN High Level Meeting on TB later in 2018.
(Shobha Shukla is the Managing Editor of CNS (Citizen News Service) and has written consistently on health and gender justice for several years. Follow her on Twitter @Shobha1Shukla or visit www.citizen-news.org)