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.
Ifesinachi Sam-Emuwa is an ACTION fellow working with the ACTION secretariat on a one year Atlas Corps Fellowship and also an Alumni of the U.S State Department Professional Fellowship.