Govt plans to treat rare diseases at one-time cost

NEW DELHI: The government will provide a financial support of up to ~15 lakh under its Rashtriya Arogaya Nidhi scheme for onetime treatment of rare diseases, according to the much-awaited draft Rare Diseases Policy.

Under the draft National Policy for Rare Diseases released on

Monday, beneficiaries would not be limited to Below Poverty Line families, but will also cover 40% of the population eligible as per norms of the Ayushman BharatPradhan Mantri Jan Arogya Yojana for their treatment in government tertiary hospitals only. The Union health ministry intends to notify certain medical institutes as Centers of Excellence for Rare Diseases. These include AIIMS, New Delhi, Maulana Azad Medical College, New Delhi, Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow and Post Graduate Institute of Medical Education and Research, Chandigarh.

“The cost of treatment of patient in these centres of excellence will be met out of donations received through the online digital platform,” the draft said.

The ministry has put up the draft policy on its website and sought comments and suggestions over it by February 10.

Rare diseases categorised under Group 1, such as Lysosomal Storage Disorders (LSDS), immune deficiency disorders, chronic granulomatous disease, osteopetrosis, Fabry’s disease and liver or kidney transplant, will be funded under the scheme.