Govt not to routinely fund treatment of rare diseases. Health ministry says it cannot afford it

Around seven crore people in the country are suffering from 450 rare afflictions

New Delhi: The Central government is drawing up a policy for treatment of patients suffering from rare diseases. The decision on whether to fund the treatment will depend on the effect of the disease on the normal life of the person concerned. “It will not be an automatic process,” a source said.

An expert committee of the Union Health Ministry will decide whether to fund the treatment on a case-to-case basis. The committee will be headed by the director general of health services.

Budget enhanced

Currently, the government has allocated a budget of Rs 10 crore for the treatment of rare diseases. It will be increased to Rs 100 crore. At present, only BPL families are extended aid for treatment of such ailments. Now, it is proposed to include APL families too in the list of potential beneficiaries.

According to estimates, there are around seven crore patients of 450 rare diseases in the country. Of them, 50 per cent are children. Almost 35 per cent of the child patients die within one year of birth, 10 per cent before their fifth birthday and 12 per cent before they turn 15.

Treatment costs a bomb

Treatment of rare diseases is very costly. For instance, treatment of a patient suffering from Duchenne muscular dystrophy (DMD) may cost up to Rs 5 crore per year. Enzyme therapy is used for treatment of most of the rare diseases. These enzymes have to be imported as no Indian company manufactures them. A health ministry official said that the government simply cannot afford funding the treatment of rare diseases. “If we do, we will exhaust the entire budget on treatment of just one patient,” he said.

(Story: Pavan Kumar)

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