Government To Provide Financial Support Of Up To Rs 15 Lakh For Treatment Of Certain Rare Diseases

The Ministry of Health and Family Welfare’s (MoHFW) Rare Diseases Policy has proposed financial support of up to Rs 15 lakh under the Rashtriya Arogya Nidhi for the treatment of certain rare diseases like stem cell transplant and organ transplants that require one-time treatment, reports The Hindu Businessline.

According to the report, the scheme, as per the draft policy, will only cover patients to whom the Pradhan Mantri Jan Arogya Yojana (PM-JAY) or Ayushman Bharat is applicable.

The Ayushman Bharat is a flagship scheme of the Centre to provide cashless health cover of Rs 5 lakh per annum per family.

Under the proposed financial support scheme under Rashtriya Arogya Nidhi, funds will be provided for the treatment of rare diseases categorised under Group I by MoHFW, including immunodeficiency, Fanconi anaemia, disorders of livers and conditions suitable for stem cell, liver or kidney.

However, the Centre will not provide funds for rare diseases that require lifelong expensive treatment ranging from Rs 10 lakh to Rs 1 crore annually.

The rare diseases not covered under the scheme include Gaucher diseases, Hunter Syndrome, Pompe disease, spinal muscular atrophy among others. An alternative funding mechanism for these diseases have been proposed by the MoHFW by setting up a digital platform for voluntary and corporate donations.

“Keeping in view the resource constraints and competing health priorities, it will be difficult for the government to fully finance the treatment of rare diseases,” stated the draft policy.

Earlier in July 2017, the MoHFW had reportedly drafted a National Policy for Treatment of Rare Diseases but had to withdraw it due to implementation challenges.