Not insured, not supported by state, ALS exponentially increases financial burden of families Premium

Effectively, there is absolutely no monetary support for people living with ALS and their caregivers from the government and it’s the family that has to bear the complete burden.

(This is the second part of a two part story, read the first here.)

ALS does not distinguish between the rich and the poor, but it demands huge financial resources from everyone, if any treatment is desired. Ajay Gupta spends over ₹1 lakh a month in order to help his mother, Usha Gupta (61), who was diagnosed with ALS in November 2010. “Medications are around ₹35-40,000 rupees every month. And it was a must to hire a nurse and a nursemaid as well. So if you add up the medication cost, salaries for the nurse and aayah, cost of daily physiotherapy (Rs.1100 per day), and the opportunity cost, you could say that I easily spend around ₹1.2-1.5 lakhs per month,” Ajay said.

“To provide good care, I need to earn well to make that happen. And in order to earn enough, one needs sufficient time to put in the work needed,” Ajay says. His current routine makes it impossible for him to go to the office for at least two days a week. In order to accommodate the duty of taking care of his beloved mother; he has shifted three jobs since 2013. 

“Initially, after giving care to my mother, I used to work remotely till 2-3 a.m. at night. But then I had to resign from my job in the U.S. because that arrangement was no longer working for me or the company,” Sohil said. Now, Sohil works from 5:30 p.m. to 11 p.m. as an independent consultant. “It’s psychologically straining, because apart from all the resources, treatments, and help needed for my mother, I need to provide for my kids as well.”

There is no support from insurance agencies when it comes to ALS. Receiving health insurance for irreversible conditions is not common. “Insurance only covers reversible illnesses or conditions. Anything that is chronic or irreversible is bound to demand a large amount of money,” said Dr. Joy Desai, a neurologist in Mumbai. 

However, Mrs. Veena (who, as mentioned in Part 1, succumbed to ALS in 2017) did get reimbursed for the cost of immunotherapy that she went through at a hospital. But that was just one of the many treatment methods that her daughter Devaunshi, and the rest of the family had tried.

A salient feature of the Union Government’s National Policy for Rare Diseases (NPRD), 2021, is that ‘financial assistance up to ₹50 lakhs will be provided to the patients suffering from any category of rare diseases and getting treatment in any of the Centre of Excellence (CoEs) identified’.