Bhakti Chavan, 24, is a graduate student from Mumbai, India. A young, bright mind, she recently completed her master’s degree in biotechnology. In 2017, she was diagnosed with extensively drug-resistant tuberculosis (XDR-TB) and began treatment at MSF’s TB programme in Mumbai. She is being treated with a combination of TB drugs, including delamanid, one of the first new TB drugs in 50 years. Her experience with long treatment and difficult side effects exemplifies the need for access to shorter, safer treatments for people with TB. This is Bhakti’s story.
I was 23 and completing my final project for my master’s degree in biotechnology when I started having stomach issues. My father took me to a gastroenterologist,who diagnosed me with irritable bowel syndrome. With medication, I managed to complete my project and exams. During this time, I started losing weight, but I thought it was all happening because of my stomach issues.
In June of 2017, I successfully completed my Master of Science degree with first class and was searching for a job when I observed swelling on the right side of my neck. I consulted my family doctor, and she prescribed me some antibiotics.
Despite this, the swelling was not reducing. We went to a chest physician who examined me and told me to undergo a biopsy. He told me to send the samples for testing, including with GeneXpert [TB test]. Two days after my biopsy, my reports came back positive for multidrug-resistant TB (MDR-TB), with high resistance to rifampicin [TB drug].
I was so shocked. How could I get this dangerous form of TB? My doctor said I needed a second-line MDR-TB treatment regimen [second-line drugs are used to treat disease that is resistant to standard first-line treatments]. He told me I have to take daily injections for at least six months. [Treatment also requires taking many different pills for up to two years.]
My family and I were so depressed after hearing about this rigorous treatment. Still, being a person with a science background, I knew in the back of my mind that this is the only treatment option I have.
Then, the drug-susceptibility testing report came with the most horrible results: I had not MDR-TB, it was XDR-TB [XDR-TB is a type of MDR-TB that is resistant to even more drugs]. I clearly remember the day when I was sitting in my doctor’s cabin with my dad, and he told me that I have XDR-TB. He gave me the phone number of another doctor and asked me to visit there. It was the number of MSF’s clinic in Mumbai. My doctor wanted me to start treatment with the new medicine bedaquiline or delamanid, which were provided by MSF free of cost.
The first day I visited MSF was so depressing for me. The doctor at MSF saw my reports and explained the side effects of the medicines, including one that can affect the heart, with risk of sudden death. But with the counselling and support of the MSF team, I gathered all my courage and decided to undergo treatment.
Starting from August 2017, I was put on delamanid, cycloserine, ethionamide, clofazimine, moxifloxacin and linezolid, and daily injections of capreomycin. The side effects of the medicines started to appear soon – lots of vomiting, weakness, and neuropathy [nerve] issues. Due to the side effects of ethionamide, I was admitted to the hospital for seven days due to dehydration from severe vomiting. I used to cry while receiving the painful daily injections, which I took for eight months [requiring daily visits to the health centre, disrupting normal life]. But I feel proud of myself that, without missing even a single injection, I managed to complete that course of injectables.
As a young career-oriented person, it is so difficult to accept a situation like this. But I am so lucky that I have huge family support from my mom, dad and sister. They gave me confidence that whatever will happen, they will always be there for me, which also gives me a lot of strength. Also, talking with other survivors helps a lot. After a one-year break from my studies, I decided to take a postgraduate diploma course to keep my mind busy with something. Now I have completed 18 months of my treatment and have two to three more months to go.
I am very happy today that due to the support of MSF, I can be cured. I wish for people who are suffering with drug-resistant TB to be diagnosed in a timely manner. New medicines are required to be available for larger numbers of patients with drug-resistant TB. Only then will we achieve our TB-free target in India by 2025.
March 2019
