Treatment for rare-disease patients at one-time cost of Rs 15 lakh


New Delhi: The government will provide a financial support of up to Rs 15 lakh under its Rashtriya Arogaya Nidhi scheme for one-time 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 per cent of the population eligible as per norms of the Ayushman Bharat-Pradhan Mantri Jan Arogya Yojana for their treatment in government tertiary hospitals only.  The Union Health Ministry intends to notify certain medical institutes as Centres 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, Post Graduate Institute of Medical Education and Research, Chandigarh and four others.

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

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.

The policy cited “resource constraints” to provide financial assistance to rare diseases like Gaucher’s disease, Spinal Muscular Atrophy, Hurler Syndrome and Wolman disease that require lifelong treatment.

“The government will endeavour to create alternative funding mechanism through setting up a digital platform for voluntary individual and corporate donors to contribute to the treatment cost of patients of rare diseases,” the draft said. Rare diseases are severe and chronic illnesses and often life-threatening. Patients suffering from rare diseases, especially Lysosomal Storage Disorders (LSDs), often lead a very incapacitating life. There are about 50 LSDs out of which only five have approved treatment options available in India.

The Ministry of Health had formulated a National Policy for Treatment of Rare Diseases (NPTRD) in July, 2017. Implementation of the policy was, however, faced with certain challenges. A limiting factor in its implementation was bringing states on board and lack of clarity on how much government could support in terms of tertiary care.  When the policy was shared with state governments, issues such as cost effectiveness of interventions for rare disease, the sharing of expenditure between central and state governments, flexibility to state governments to accept the policy or change it according to their situation, were raised.