Insurance companies turn their backs on scleroderma patients

CHANDIGARH: Abha (name changed) has been hiding her face behind a veil. The 35-year-old’s husband had abandoned her due to discoloration of her face caused by an autoimmune disease — scleroderma. Abha is not alone. Like her, thousands of patients registered at PGI from across the country have been coming to the clinic for treatment. However, none is able to secure health insurance coverage for the rare disease.

“As soon as it’s written that the patient has scleroderma, insurance companies turn their back. The disease can be treated with newer medicines that provide good quality life for 10 and 15 years. But with no economic support, it becomes a major barrier for patients. We request pharmaceutical companies to offer concessions, but this is not a long-term measure,” said Dr Chandrashekara S, medical director, Chanre rheumatology and immunology center and research, Bangalore. He was invited to speak on the patient awareness programme on scleroderma organised by PGI on Saturday.

He said, “We have repeatedly asked for coverage from the Indian Rheumatology Association, including some government schemes, but we have still been struggling to get such facilities for our patients in the country.”

The PGI is one of the largest centres in the country for the treatment of scleroderma. A website - www.sclerodermaindia.com has been created by the PGI in 21 different languages to increase awareness about the disease. “This disease is not difficult to diagnose but assessment becomes significant to understand how much the disease has progressed and which all organs it has spread to. Accordingly, the treatment is decided,” said Prof Aman Sharma, department of medicine, PGI.

The website has been created to work as an interface between the doctors and patients. There is also a patient group and a social networking site where the doctors connect with the patients for follow ups. “But for this disease to be managed, early diagnosis and treatment is the only key,” said Prof Shefali Sharma, department of medicine in PGI who has been seeing scleroderma patients.


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