Between August 2014, when Suresh* was diagnosed with leukaemia, and now his family has spent over Rs. 10 lakh. Their home and land were sold for less than it was worth, says Pushpa*, Suresh’s mother. Now, while mother, son and daughter live in a room behind a private hospital in Chennai for Rs. 700 a day, the father lives alone in their village, selling cloth.
“We had no awareness about insurance coverage and did not have a policy,” says Pushpa, who is from a village near Thanjavur. Close to two years after the diagnosis, chemotherapy, a bone marrow transplant and follow-up tests, Suresh, who has completed class VIII, still has to be around the hospital. He has been admitted a few times for side effects. “Our families have given us some money,” says Pushpa, tears on her cheeks, “but they can’t afford anymore. We’ve borrowed some but it’s getting harder.”
The penetration of health insurance in India is only about three per cent, says V. Jegannathan, chairman cum managing director, Star Health and Allied Insurance Company.
In Tamil Nadu, the Chief Minister’s Comprehensive Health Insurance Scheme (CMCHIS), for those below an annual income of Rs. 72,000, provides Rs. 1 lakh per family per year with a provision to pay up to Rs. 1.5 lakh for specified procedures. About 1.58 crore people, around 22 per cent of the State’s population, access the scheme, which doctors say is extremely beneficial and has helped many low-income families fund their treatment.
But insurance, whether the state’s or obtained by an individual, does not cover everything and certain segments of the population have neither.
For instance, Rs. 9.4 lakh is available from the CMCHIS’s corpus fund (available for expensive procedures) for a bone marrow transplant, and this would cover the cost of a transplant from a related donor. But the cost of the transplant from an unrelated donor is Rs. 25-30 lakh, says Revathi Raj, paediatric hemato-oncologist, Apollo Hospitals. Since only 30 per cent of patients find a related donor, the rest, like Suresh’s family, have to find the rest themselves. Many insurance policies do not cover genetic disorders such as Thalassemia and Haemophilia, she says, but the CMCHIS does.
People with disabilities, especially intellectual and psychosocial disabilities, also generally fall through the gaps of mainstream insurance coverage, says disability rights activist Vaishnavi Jayakumar. Many companies do not offer health insurance to those over 75, and people who have diabetes or who have had cancer would find it difficult to get insurance without an endorsement, says Mr. Jegannathan. “Insurance cover, once granted, lasts for a lifetime. However, the policy will cover only up to the amount of insurance taken, plus no claim bonus, if any, will be added,” he says.
The worst-hit, says Dr. Raj, are families who fall just above the income limit for the CMCHIS and also, do not have other cover as they struggle to pay for niche-area, expensive treatments.
Most of K.R. Balakrishnan’s patients have end-stage heart disease. “By the time they get to this stage, even if they do have insurance, which most don’t, they money has been exhausted. They have to spend a few months in intensive care even before they get a transplant. The transplant alone costs Rs. 16-20 lakh,” says the director of the institute of cardiac sciences, Fortis Malar Hospital. Heart transplants are not covered under the CMCHIS.
At the Cancer Institute, Adyar, about 60 per cent of patients are treated either free or at highly subsidised costs. V. Shanta, chairperson of the institute, notes that the CMCHIS covers only the first of the cancer treatments. “Since cancer requires follow-ups and sometimes, additional treatment, the cover may fall short and many patients do not have adequate money for follow up care,” she says.
Even when patients are covered by the CMCHIS or another policy, out- of-pocket expenses can be huge. “Insurance does not usually cover the costs of travel from a village, the loss of wages of the patient and attendants, costs of staying in the city, food and other expenses,” says Soumya Ramanan, a paediatric cardiac surgeon who runs ‘Mending Tiny Hearts Foundation’ that helps families fund surgeries.
The biggest issue when it comes to insurance however remains awareness. “Even though people are now beginning to realise the importance of health cover, there is a long way to go. It is the middle income groups that are the most affected without coverage,” says Mr. Jegannathan.
For families like Suresh’s, life has been at a standstill. Besides the loss of money, schooling and jobs have taken a hit as has the well being of other family members. Suresh’s younger sister is not in school at present. “All we are hoping for is to be able to go home soon and for Suresh to healthy,” says Pushpa.
*Some names changed
This is part four of a six-part series, Malady Nation, on India's multi-dimensional healthcare crisis. This part examines why India's health insurance models frustrate and exclude a large part of the population.
