Rare Diseases Policy

Source: PIB

What is the News?

Union Minister of State for Health and Family Welfare has informed Lok Sabha that the National Policy for Rare Diseases,2021 has been finalized and put in the public domain.

About National Policy for Rare Diseases,2021: The policy aims at lowering the incidence and prevalence of rare diseases based on an integrated and comprehensive preventive strategy comprising:

• awareness generation
• premarital, post-marital, pre-conception, and post-conception screening
• counseling programmes to prevent births of children with rare diseases
• enable access to affordable health care to patients of rare diseases.

Categorisation: The policy divides Rare Diseases into three groups, namely:

• Group 1: Disorders amenable to one-time curative treatment.
• Group 2: Diseases requiring long-term / lifelong treatment with a relatively lower cost of treatment.
• Group 3: Diseases for which definitive treatment is available, but challenges are to make optimal patient selection for benefit, very high cost, and lifelong therapy.

Initiatives for treatment support for patients of rare diseases under the Policy are as follows: –

• Financial support up to Rs. 20 lakhs under the Rashtriya Arogya Nidhi scheme shall be provided by the Central Government for the treatment of those rare diseases that require a one-time treatment (diseases listed under Group 1).
  • Beneficiaries for such financial assistance would not be limited to BPL families. It will be extended to 40% of the population who are eligible as per the norms of Pradhan Mantri Jan Arogya Yojana.
• State Governments can consider supporting patients of such rare diseases that can be managed with special diets or hormonal supplements or other relatively low-cost interventions (Diseases listed under Group 2).
• Alternate Funding Mechanism: The government will create an alternate funding mechanism by setting up a digital platform for voluntary individual and corporate donors to contribute to the treatment cost of patients with rare diseases.
  • The fund will be utilized for the treatment of patients suffering from rare diseases, especially those under Group 3.
  • The treatment cost of the patient will be the first charge on this fund. Any leftover fund after meeting treatment costs can be utilized for research purposes also.
• Consortium of Centres of Excellence: It will synchronize prevention and treatment efforts. AIIMS, Delhi will be the nodal hospital to coordinate with other Centres of Excellence for various activities relating to the prevention and treatment of rare diseases.
• National Consortium for R&D on therapeutics for Rare Diseases: It will be provided with the mandate to do R&D, technology transfer, and indigenization of therapeutics for rare diseases. It will be convened by the Department of Health Research(DHR) with ICMR as a member.