New Delhi: Union Health Minister Dr. Harsh Vardhan has approved ‘National Policy for Rare Diseases 2021’ which will reduce the high cost of treatment for rare diseases and also increase focus on domestic research.

The field of rare diseases is very complex and the prevention and management of the disease have multiple challenges. Early diagnosis is mainly a major challenge because of lack of awareness among physicians, lack of diagnostic facilities and adequate screening.

There are also fundamental challenges in the research and development of rare diseases as little is known about the history of these diseases. They are difficult to research upon as the patient pool is extremely small and there is an inadequate clinical experience.

The Union Health Ministry has informed that financial support of up to Rs. 20 lakh under the Rashtriya Aarogya Nidhi Scheme has been proposed for the treatment of those rare diseases that require only one-time treatment.

Beneficiaries for such financial assistance will not be limited only to BPL families but the benefit will also be extended to about 40 percent of the population, who are eligible under the Government’s Pradhan Mantri Jan Aarogya Yojana.

As the cost of treatment of rare diseases is prohibitively expensive, various High Courts and Supreme Court earlier had expressed concern about the lack of a National Policy for Rare Diseases in the country. The latest policy aims at lowering the high cost of treatment for rare diseases. It will also increase focus on indigenous research of the diseases. 

It will be done with the help of the National Consortium which will be set up under the Health Research Department, Health Ministry as Convenor. Increased focus on research and development, as well as local production of medicine, will also lower the cost of treatment for rare diseases.

The policy envisions the creation of a National Hospital-based Registry of Rare Diseases so that there is an availability of adequate data of rare diseases for their research and development. The policy will focus on the early screening and prevention of rare diseases through primary and secondary healthcare infrastructure and through counselling of high-risk patients. It will also strengthen tertiary health care facilities. The Policy will promote a crowd funding mechanism in which individuals and corporates will be encouraged to extend financial support through the IT platform for the treatment.