Health Minister Dr. Harsh Vardhan approved the “National Policy for Rare Diseases 2021” on 30th of March. The policy document has been uploaded on the website of Ministry of Health and Family Welfare.
Different stakeholders have been demanding for a comprehensive policy for prevention and management of rare diseases for quite some time.
The Rare Diseases Policy aims to lower the high cost of treatment for rare diseases with increased focus on indigenous research with the help of a National Consortium. Increased focus of research and development and local production of medicines will lower the cost of treatment for rare diseases. The policy also envisages creation of a national hospital based registry of rare diseases so that adequate data is available for definition of rare diseases and for research and development.
The Policy also focuses on early screening and prevention through primary and secondary health care infrastructure such as Health and Wellness Centres and District Early Intervention Centres.
The Policy also aims to strengthen tertiary health care facilities for prevention and treatment of rare diseases by designating 8 health facilities as Centre of Excellence. These Centres will also be provided one-time financial support of up to 5 crore rupees for upgradation of diagnostics facilities. A provision for financial support up to 20 lakh rupees under the Umbrella Scheme of Rastriya Arogya Nidhi is proposed for treatment of those rare diseases that require a one-time treatment. Beneficiaries of such financial assistance would not be limited to BPL families. The benefit will be extended to about 40 percent of the population, who are eligible under Pradhan Mantri Jan Arogya Yojana.