At the age of three and a half, Pranay Laccheta had one of his kidneys removed. Six solid tumors had formed around his kidney, making it extremely painful for the toddler to move. By the time he turned six, three more solid tumors cropped up. This time near his spinal cord, but relatively smaller in size. At the beginning of this year, a second surgery was performed that led to the diagnosis of Wilms tumor, the most common form of kidney cancer in children, also called nephroblastoma. By this time, Pranay’s parents – Ritesh, a farmer and Pooja, a housewife – had already spent almost Rs 6 lakh for the two surgeries, and the cancer treatment was beyond their means. The residents of Dhar, a district of Madhya Pradesh, had only a strong willpower to help their son through a disease they had heard for the first time in their lives.
Five months ago, hope came in the form of free childhood cancer treatment offered by the Tata Memorial Hospital in Mumbai and a ‘home from home’ offered by the St. Jude India Childcare Center in a suburb of Mumbai, Sewri, where the family has been home for so long. Pranay’s treatment lasts, free housing and costs are given. While the family receives full support from the hospital and St. Judes in terms of medical treatment costs, daily food costs and housing, it is the future that worries them.
“Since our child had cancer, he will have to undergo expensive tests and routine checkups, even after he is cancer-free. The costs will never end,” Ritesh says. So far, Pranay has undergone six cycles of chemotherapy and 15 cycles of radiation.
Bhars, a family of three from Begampur in Bengal, found refuge in St. Judes when they came to treat their nine-and-a-half-year-old son, Rana Bhar, at Tata Memorial after he was diagnosed with blood cancer. months ago. On January 7, 2021, Rana celebrated his ninth birthday. Within the next 15 days, he was diagnosed with blood cancer. Now, less than a week to go before his 10th birthday, the boy hopes to get rid of the disease and go home.
On a clear afternoon, a skinny Rana – his head shaved – dips into a coloring book while his father Robin, a construction worker, watches. Rana’s upper jaw teeth are completely pulled out due to a cancer infection, which prevents the boy from eating comfortably; the doctor advised plastic surgery when he turns 18. “We won’t have the means to pay the costs once we’re out of here,” Robin says.
This predicament of impending and long-term medical costs long after a patient has been declared cancer-free is often seen in families of cancer patients. According to an overview analysis of the financial toxicity of cancer care in India conducted by a team of researchers consisting of Kochi-based oncologist Dr. Aju Mathew, Kozhikode-based medical student Jeffrey Mathew Boby and Hyderabad-based oncologist Senthil Rajappa, and published in the latest issue of Lancet Oncology, it appears that cancer is one of the leading causes of morbidity and mortality in India and that approximately 50 percent of cancer patients and their families struggle financially to manage care for the disease. In India, an estimated one-third of households with cancer spend more than half of their annual per capita household expenditure on hospitalizations for the disease.
To pay for the “catastrophic health expenses,” patients and families often resort to emergency financing (or emergency financing) — they borrow money, pawn jewelry, use all of their savings, or sell assets. The main reason for this is the lack of insurance coverage for cancer patients in the country. “And for kids suffering from cancer, this is a big hit because they don’t get insurance for the rest of their lives,” said Anil Nair, CEO of the St. Jude Childcare Center, “The IRDA, the insurance coverage regulatory agency, did not allow insurance companies [cover]cancer patients. This is even if these patients are medically certified cancer survivors — meaning they are not detected with cancer cells for five years from the date of diagnosis.”
St. Judes, which provides free housing and holistic support to more than 400 children with cancer, has been trying hard to get insurance coverage for them. The organization is currently present in nine cities, with 37 centers that can care for children with cancer and their families. In November, children supported during treatment by St. Jude India ChildCare Centers (St. Judes India) and who are now cancer-free for five years will receive health and accident coverage from Chennai-based Star Health for the first time. and allied insurance company.
The initiative will cover 596 children in the first year [270 children under health category and 326 children under accident category]. At least 500 children are expected to be added to this group each year as part of a new St. Judes program called St. Judes for Life, which ensures that children who have won the battle against cancer can fulfill their potential. “We at Star designed this coverage to enable children who are diagnosed, treated and cancer-free for 5 years to fulfill their aspirations without worrying about the cost of medical emergencies,” said Dr. Prakash, general manager of Star Health and Allied Insurance.
“It will help us live normal stress-free lives and help us focus on our future careers,” said Nazia Sayyed, 26, a cancer survivor who spent 10 years in St. Judes since she developed bone cancer at age 9. -years old. She is now pursuing her master’s degree after receiving her B.Ed degree.
The pandemic further highlighted the need for health insurance for cancer patients. “Over the past two years I must have saved about Rs20,000 out of my pocket for routine tests and ultrasounds as my doctor at Tata Memorial had asked me not to travel unless there is an emergency. This health insurance will benefit me a lot,” says Ankit Mourya, 22, a cancer survivor and currently pursuing a degree in pharmacy.