A Rare Case of Extreme Apathy

The draft National Policy for Rare Diseases disappoints parents who had hoped the State would help their kids find better care

- Ajay Sukumaran in Bangalore

FOR the past year, several groups of parents whose children suffer from debilitating rare genetic diseases have been waiting for the government to spell out a blueprint for their treatment. Moumita Ghosh, an optometrist in Calcutta, is one of them. In July 2018, she had put in an application to West Bengal’s health department to support treatment for her daughter Debosmita, aged nine, suffering from spinal muscular atrophy (SMA). “Every week since I have visited the health department hoping something will happen,” she tells Outlook. All that anticipation, she fears, may amount to nothing as the draft National Policy for Rare Diseases (NPRD) 2020, which was put out for public comments last month, doesn’t specifically talk about an outlay. “We had hoped the new policy will provide some kind of funding for the treatment of patients,” she says.

Rare diseases present a complex problem, starting with the diagnosis that takes years in many cases and then the treatment—many disorders have no treatment yet, but where they are available, the medicines are among the most expensive in the world. About 70 million Indians are likely to be suffering from rare genetic diseases going by estimates of global incidence rates, but actual data pertaining to India isn’t available. This includes a large collection of disorders—about 450 diseases considered rare globally have been recorded in India, many of them extremely rare and others less so.