Friends of Max’s Patient Advocate of the Month for July 2022 is Captain Vinay Shukla, our City Chapter Leader from Mumbai.
Born and raised in Rai Bareily, Uttar Pradesh, Capt. Shukla completed his studies and joined the Indian Navy in 1966 as a commissioned officer. In 1972, he married Vasamvada (Known lovingly to FOM as Shukla Aunty) and they have two daughters. – Dr Pallavi and Prachi.
In the year 1999, Capt. Shukla was posted at the Bombay Port Trust. One day his wife complained of an acute pain in the stomach and was immediately rushed to the Naval Hospital. The doctors could not determine the cause but prescribed painkillers. A CT scan revealed a tumour hanging out of the outer wall of her stomach. She was diagnosed with Gastrointestinal Stromal Tumour (GIST).
Vasamvada underwent two surgeries to remove the tumour – first from her stomach and the second when it reappeared a year later in her spleen. Both times, the doctors assured the couple that there would not be a recurrence, but that was not to be. 14 months later, the tumour reappeared in Vasamvada’s liver. This time the doctors told Capt. Shukla that nothing else could be done and that it was just a matter of time.
Around the same time, the drug “Glivec” had been approved by the Food and Drug Administration (FDA) in USA. Dr D’Souza, who had removed Vasamvada’s spleen informed Capt. Shukla about it. He recalls the doctor saying, “I don’t know if this will work and I don’t know if you will be able to afford it. But if there is anything in the world that has a possibility of saving your wife, this is it.”
Capt. Shukla imported the medicine through Novartis at a hefty cost of ₹ 1.2 Lakhs a month for his wife’s treatment under the advice of Dr Suresh Advani. But a year later, the family had exhausted all their resources and did not know what to do. In 2001, he learnt about The Max Foundation and met with Viji Venkatesh in Mumbai. Vasamvada’s case was soon approved and she received her supply from Max for her treatment till 2021 when she voluntarily withdrew from the Max Access Solutions Programme due to the medicines being easily affordable now.
Capt. Shukla and Vasamvada attended their first meeting at the FOM All India Meeting at Goregaon in 2004. He remembers it as being a great experience where they got to meet other patients and physicians. The physicians gave them valuable information about the drug of which not much was known at the time.
Since then, the couple has attended all support group meetings organized by FOM and Max in Mumbai. They have also attended the FOM Leadership Summits at Hyderabad and Kochi. Capt. Shukla has also helped FOM in translating literature. He also regularly contributes in his personal capacity to the Chai for Cancer initiative. His daughter, Dr Pallavi, also worked with The Max Foundation’s South Asia office for three years.
Capt. Shukla has a simple message for all our readers, “Patients must remain hopeful. There can’t be a better medicine than Glivec to treat this disease, so it is important to take it regularly. You will certainly overcome this disease and live a happy life.”
