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Background
Ministry of Health and family Welfare, Government of India formulated a National Policy for Treatment of Rare Diseases (NPTRD) in July 2017. Implementation of the policy, however, faced 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. Public Health and Hospitals is primarily a State subject. Stakeholder consultation with the State Governments at the draft stage of formulation of the policy could not be done in an elaborate manner. When the policy was shared with State Governments, issues such as cost-effectiveness of interventions for rare disease visà-vis other health priorities, 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 by some of the State Governments. In the circumstances, though framed with the best intentions, the policy had implementation challenges and gaps, including the issue of cost-effectiveness of supporting such health interventions for limited-resource situations, which made it not feasible to implement.
Given the challenges in implementing the policy, the need for wider consultation and recommendations, a decision was taken to reframe the National Policy for Treatment of Rare Diseases. An Expert Committee was constituted by the Ministry of Health and Family Welfare in November 2018 to review the NPTRD, 2017. The Terms and References of the Expert Committee are given below:
a. To review the National Policy for Treatment of rare Diseases, 2017 and to suggest amendments/changes as may be required.
b. To define Rare diseases for India.
c. To draft National Policy for Rare Diseases.
d. To suggest vision and strategy in the country’s context.
e. Pending reframing the policy
The earlier policy has been kept in abeyance vide a nonstatutory Gazette Notification dated 18-12-2018, till the revised policy is issued or till further orders, whichever is earlier. Based on the report of the Expert Committee and with the approval of the competent authority, the draft National Policy for Rare Diseases was finalized and placed in the public domain on 13.1.2020 inviting comments/views from all the stakeholders, general public, organisations and States/UTs. Comments/suggestions received from the general public/organisations/stakeholders/States/UTs were referred to DGHS for examination and to submit recommendations. DGHS constituted an Expert Committee to examine the comments/suggestions received. Based on the examination of the comments/suggestions received and recommendations of the same Expert Committee and after further deliberation, the National Policy for Rare Diseases has been finalised.
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