CF in India Amidst the Worst Pandemic in a Hundred Years
By Mark A. Tremblay and Gautam Kumar
When I first read that the new strain of COVID-19 was claiming upwards of 4,500 lives and over 450,000 new cases per day in India I, like most of the world, was deeply saddened and overwhelmed by the images of overrun healthcare facilities as well as stacks of bodies piled up in alleys and parking lots.
In a country of 1.3 B people with a fragile disjointed, highly inequitable healthcare system where access to pulmonary care not to mention CF care is so limited, how would this crisis and it’s drain on pulmonary resources affect CF patients many of whom depend on oxygen, nebulizers, and pulmonary medication for their very survival.
As someone who helps run a small organization that serves international CF patients, it was just a few days after reading the first Washington Post article that I met a CF patient living in India named Gautam via Zoom who reached out to us through Facebook for help. Fortunately, our organization had a personal oxygen concentrator and a therapy vest to offer him and we were able to ship it to him right away. The timing of his request and our quick turnaround was quite miraculous considering within a few days of receiving his oxygen concentrator the price of oxygen canisters skyrocketed 50-fold and the supply of oxygen concentrators dried up completely.
With that introduction, let me introduce you to Gautam, a fellow warrior who lives with advanced CF lung disease in India. In his own words Gautam (pronounced [GOTH] + [UHM]) is a, “27-year-old CF patient who works for Qualcomm as an Artificial Intelligence specialist. "Although I did not get diagnosed with CF until age 14, I was a very sick child with a constant cough and I was on oral antibiotics for a couple of months every year for pneumonia. Once I was diagnosed with CF, I tried to make sure I got to the CF specialist every year despite the fact that he is more than 1,000 miles away in New Delhi. I have not been to a CF appointment since March 2020 when the country went into full lockdown, but at my last appointment, my FEV-1 was 20% which requires 24/7 oxygen. I take enzymes and nebulized medications every day but since therapy vests are in extremely short supply and cost as much as six months salary I designed and built my own chest PT machine out of back massagers.”
“Before the latest pandemic surge, a Personal Oxygen Concentrator (POC) cost around 50,000 rupees which equates to approximately one and a half times the average monthly salary in our country. However, in April when the more virulent COVID-19 variant hit, the spike in new cases completely overwhelmed the country’s healthcare system and made it nearly impossible to find, let alone afford, pulmonary supplies such as oxygen tanks and POCs.”
Fortunately, for Gautam our organization with the help of several generous donors and volunteers in the US were able to ship a therapy vest and oxygen concentrator to him in just the nick of time. Consequently, despite Gautam’s advanced lung disease, he weathered the crisis better than most of his fellow CF warriors in India. Nevertheless, there are undoubtedly thousands of CF patients that will not be so lucky and hundreds if not thousands that will pass before the pandemic abates.
As I am writing this, I am acutely aware of the challenges CF poses sitting in a hospital bed chained to an IV pole 18 hours per day being treated for yet another infection subsequent to contracting COVID-19 late last year, but at the same time I am also equally aware that I’m one of the most privileged CF patients on the planet because I’ve got top notch health insurance and access to Trikafta. Even as I sit here down on my luck in the hospital yet again, I feel a deep connection to the nearly 40,000 fellow CF warriors around the world who: do not have access to a hospital, have little or no CF specialized care and/or have only the most rudimentary treatment options available to them.
As a 52-year-old CF patient with advanced lung disease, I challenge myself every day to look beyond my own circumstances and self-care needs including three hours of treatments and nebulizers per day, frequent hospitalizations, IV antibiotics and depressive thoughts to see others in their suffering and try to help. I deeply believe that no matter how dire our own circumstances there is someone we can help or try to help every day in some way from providing life-saving equipment to reaching out to mend a relationship or offer an encouraging word.
In a sense, life is a massive beach filled with stranded starfish after the high tide has receded and every one of us has the opportunity and capacity to flip at least one back into the ocean every day. Look around, where’s the stranded starfish in your life that’s yearning to be thrown back into the surf?
About the Authors:
Gautam Kumar, B.S., was diagnosed with CF at 14 years of age and is currently 27 years old. He lives Hyderabad, India with his mother and father as well as his younger sister and
brother. He earned his Bachelor of Science Electrical Engineering at one of the best engineering schools in the country, India Institute of Technology Roorkee. He is an Artificial Intelligence Engineer working for Qualcom developing an AI engine which will put the smart in your smart phone. Gautam loves: shows, movies, as well as reading science fiction novels and is a big fan of Pearl Jam and Linkin Park. (20+) Gautam Kumar | Facebook
Mark Tremblay, M.A., M.P.A., was diagnosed with CF at 18 months, currently is 52 years old, and lives in Albany, NY, with his wife, MaryGrace. Mark has worked in the New York Governor’s Division of Budget for six years and presently works full-time at the Department of Health. He is the President of “CF Vests for Life”, (CF Vests for Life Foundation (cfvests4life.org) which collects donated therapy vests, nebulizers, and oxygen saturators for distribution to CF patients around the world. Additionally, he is the leader of the Attain Health group, “CF Warriors for Recovery and Freedom”. Mark is also a director for United States Adult Cystic Fibrosis Association, the publishers of CF Roundtable.