The Lysosomal Storage Disorders Support Society has appealed for a national policy on treatment of those suffering from rare diseases. It has called on the government to implement the draft policy, which had envisaged a corpus of ₹100 crore.
Manjit Singh, president of the society, said that the draft policy the government had come up with was contrary to the assurance given by the government in Parliament. “The corpus was to be raised in a 60:40 ratio by the Central and State governments. The government had sought suggestions from the public but it has not taken off yet.”
The society has written to the Prime Minister and the Chairman of the 15th Finance Commission to expedite the policy that would provide access to medical treatment, ranging from ₹50 lakh to ₹2 crore, for patients in need of them.
The society members said the government’s decision to provide one-time treatment cost had left approximately 190 patients with no support. Some of them had already died for want of money for treatment. The government should reprioritise the provision of treatment for fatal disorders like rare diseases, the members said.
There are around 7,000 kinds of rare diseases but in India, only 12 to 15 types have definitive treatment, the society explained in its letter to the Prime Minister.
The members pointed out that government arms, such as the Employees State Insurance Corporation, paid for the treatment of 24 children and the Armed forces were taking care of over 30 children. The members also pointed out that the Finance Ministry could make it mandatory to allocate 2% from Corporate Social Responsibility funds for treatment of rare diseases. The government could even come up with a cess of 0.005%.
The policy should envisage increased testing and diagnosis for genetic disorders and counselling that could help check certain kinds of more common rare diseases, Mr. Singh suggested.
