Unlike in many other countries, thalassemics in India are denied health cover, thus robbing them of a critical need

Young Anubha Taneja is a lawyer with a reputed company in the national capital. Like many salaried employees, she has, among other company perks, a group health insurance. Yet, she says, “Despite having a great job, it is frustrating because the system discriminates against me.”

A tax-payer, Anubha is thalassemic major. Despite availing the free blood transfusion facility at the Lady Hardinge Medical College every fortnight, her health bills run up to Rs. 30,000 per month. Her high salary is a godsend. “Otherwise, like many others, I would have to go from pillar to post,” she says.

The iron chelator that government hospitals distribute free to thalassemics is the cheapest, and it doesn’t suit all, including Anubha. “So I have to spend a lot of money.” Her group health insurance doesn’t cover it because she is thalassemic. “Forget picking bills for my condition every month, even after a year, I am awaiting an insurance claim for a stomach ache despite a certificate from the doctor who treated me, that it has nothing to do with thalassemia,” states Anubha. “I feel wronged,” she sighs.

Her friend Shruti, though employed, does not earn enough to foot her medical bills. She borrows from family.

What people like Anubha, Shruti and thousands of others in this country desperately miss is a health insurance policy that respects their condition. Like the one fellow thalassemic Inderdeep Kalra — living in the U.S. — has. “There are several countries today which offer health insurance to thalassemics. Though the insurance sector is opening up in India, we are yet to attract the interest of the sector,” says Anubha.

An insurance agent and a thalassemic, Aastha Nanda, pins down the possible reasons. “It is not profitable enough for the insurance companies here. In comparison to diabetics or heart patients (which can also be inherited diseases) in India, we are not enough. They can avail of a health policy, by paying a higher premium, a provision extended to thalassemics, too, in several countries.”

Having worked as an underwriter with a private company, Aastha points out another key reason. “A claim is at the discretion of an underwriter, so underwriters need to be trained to be sensitive. In India, it is missing.” During her training, she was given information on every disease except thalassemia. “There is a specific questionnaire for diabetics and heart patients. In the same way, a questionnaire can be made for thalassemics too.”

Neeraj Basur, Chief Financial Officer, Max Bupa Health Insurance, doesn’t think numbers are an issue. “It is more due to the recurring nature of treatment. However, if thalassemia is diagnosed after the policy comes into effect, it is covered.” But severe thalassemia is typically diagnosed in the first few years of childhood, and cases of babies being insured for health are rare. Basur though justifies insurance covers for diabetics and heart patients, even in the most advanced stages “with loading” by quoting CII and KPMG statistics which point at the rising number.

With no statistical help to back their case, there are people in India like Sangeeta Bhola — thalassemic, unemployed, from a lower middle class family, living “in fear of falling sick.”

“I am an orphan, live with my grandmother who has limited means,” she says. Sangeeta takes blood from a Delhi Government hospital; its iron celator suits her luckily. But she regularly raises money from friends and neighbours to buy folic acid and calcium tablets.

U.S.-based Inderdeep explains how he typically claims health insurance “24-30 times a year”. His insurance is covered by his employer. “The premium per year is around $40,000-70,000, I pay a small percentage of it.” He points out that there is no pre-existing clause in most insurance policies in the U.S. as it is here. Which means, any disease or a condition that you have prior to buying the policy, will also be covered.

A U.S. connection has worked for Gurgaon resident Abhinav Wadha too. A thalassemic, this financial analyst working with a large American company claims health insurance. “The premium is paid by my employers. I use it for all my medical expenses every month, I am reimbursed within 14 days,” he says. Abhinav accuses our Government of not doing enough. “In countries like Indonesia, Hong Kong, England, Italy, and the UAE, all expenses of thalassemics are sponsored by the Government.”

Suksohit Singh — the IAS officer in the news recently because the Prime Minister intervened to allow him into the cadre — points outs, “The medical superintendent of Delhi’s Ram Manohar Lohia Hospital said, ‘I will be a financial burden on the government.’ If a senior government official talks like that, what can you expect from others?” Now that he is a government servant, he can use the CGHS facility but notes, “Without a computerised system, I will have to inform the local CGHS station about my condition after every transfer.” He calls for a national level thalassemic control programme because “if we make a thalassemia screening test mandatory during pregnancy, there will be zero thalassemia in India.”

Shobha Tuli of voluntary organisation Thalassemics India has been batting for health insurance for thalassemics for some time now. “CII had organised a meeting with insurance companies in this regard. But nothing has come of it,” she says.

Attempts to speak to the Governing Body of Insurance Council, Mumbai, to throw light on the clause on “pre-existing diseases” in India were unsuccessful.