Drug-resistant TB in India and learning about the greater impact of AMR as a patient
My Story: Bhakti Chavan
My name is Bhakti Chavan and I am an AMR patient survivor from India. As I neared the completion of my master’s degree in biotechnology at the age of 23 in 2017, I encountered a troubling development: gastrointestinal issues.
Concerned by this, my father accompanied me to a gastroenterologist, who diagnosed irritable bowel syndrome. Thanks to medication, I managed to navigate through my final project and exams. However, amidst this health challenge, I noticed a gradual decline in my weight, attributing it initially to my ongoing gastrointestinal condition.
In June 2017, after earning my Master of Science (MSc) degree with first-class honors, I eagerly pursued job opportunities. However, my plans were interrupted when I discovered swelling on the right side of my neck. Consulting my family doctor, I was initially prescribed antibiotics, but the swelling persisted. Seeking further insight, I visited a chest physician who recommended a biopsy. Two days later, the biopsy results revealed a daunting diagnosis: multidrug-resistant tuberculosis (MDR-TB).
I was utterly stunned. How had I contracted this dangerous strain of tuberculosis? Following the diagnosis, my doctor prescribed a rigorous second-line MDR-TB therapy, which included daily injections for a minimum of six months, alongside a multitude of tablets that could extend up to two years. The gravity of the treatment weighed heavily on my family and me. Then, a revelation shook our understanding: the drug-susceptibility testing report indicated it was not MDR-TB, but rather XDR-TB (extensively drug-resistant TB). This meant that I was not only resistant to the second-line treatment, but various other last-resort treatments.
I remember sitting in my doctor’s office with my father when he told me I had XDR-TB. He gave me the phone number of another doctor and advised me to go there. It represented the number of Médecins Sans Frontières (MSF) clinics in Mumbai. My doctor advised me to start treatment with new medicines which were provided by MSF free of charge.
Grateful to survive
The doctor at MSF saw my reports and explained side effects of the medicines, including one that could affect the heart and risk of sudden death. However, with counseling and support of the MSF team, I gathered all my courage and decided to undergo treatment.
Commencing in August 2017, I was prescribed several last-resort antibiotics along with daily injections. Today there are better drugs available and injectable-free regimens are recommended; however, this wasn’t available to me at the time. The medication’s adverse effects manifested swiftly, including bouts of vomiting, weakness, and neuropathic challenges. Undergoing the painful daily injections for eight months was emotionally taxing, necessitating daily visits to the health center and disrupting my regular life. Nevertheless, I take pride in my determination to complete the injectables course without missing a single dose.
As a young, career-oriented individual, it’s undeniably challenging to come to terms with this situation. However, I count myself incredibly fortunate to have had unwavering support from my mother, father, and sister. Their commitment to support me through all circumstances has given me tremendous strength. Additionally, connecting with fellow survivors has proven to be invaluable. After taking a one-year hiatus from my education, I made the decision to pursue a postgraduate diploma to keep my mind engaged.
Today, I am filled with joy knowing that timely diagnosis and access to innovative TB treatments have led to my recovery. There’s a pressing need for these new medicines to be accessible to a larger number of patients with drug-resistant TB. I’m driven to motivate and inspire other patients to adhere to their TB therapy regimens. TB is a curable illness and we must handle novel treatments with care to prevent a scenario where no effective drugs are available, leading to the emergence of highly-resistant bacteria.
Using my voice to make an impact on AMR
Drug-resistant tuberculosis (TB) is linked to antimicrobial resistance (AMR) because the bacteria that cause TB can develop resistance to the antibiotics commonly used to treat it, rendering these drugs ineffective and complicating treatment efforts.
I am currently dedicating myself tirelessly to advocating for patients, particularly in the realm of antimicrobial resistance (AMR). Recently appointed as a member of the WHO Task Force of AMR Survivors, my mission is to amplify the voices of others and raise awareness about the repercussions of facing a future where antibiotics and other antimicrobial medicines cease to be effective, as they were for me. If AMR happened to me, it could happen to anyone, irrespective of their location or whether they have a disease like TB. I consider myself fortunate to have survived.
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Bhakti Chavan
Bhakti was diagnosed with extensively drug-resistant tuberculosis (XDR-TB) in 2017 and required long term treatment with daily painful injections and medicines with extreme adverse effects. She was fortunate to receive newer medicines for her treatment through an International NGO as the national health system was not providing them at that time. Even with the newer medicines, she had to take a break from studies and social life for more than a year, not to forget the repeated hospital admissions to manage the adverse effects of medicines. Two years of treatment converted the young chirpy girl into a champion for patients with drug-resistant Tuberculosis. Bhakti is a clinical research professional and works for a biotech company. Bhakti is also currently serving as a member of the WHO Task Force of AMR Survivors.