The purpose of this policy is to reduce the costs incurred in treating rare diseases, as well as to focus on indigenous research and production of medicines for the treatment of diseases.
Union Health and Family Welfare Minister Dr. Harsh Vardhan. (File Photo)
The Union Health Minister, Dr. Harsh Vardhan on Saturday approved the ‘National Policy for Rare Diseases 2021’, aimed at treating serious or rare diseases. For it is to focus on research and production of medicines in the country itself, as well as to reduce the huge cost or expenses incurred in treating rare diseases. Under this scheme, a provision has been made to give 20 lakh rupees in the name of help under the National Health Fund for the treatment of rare diseases. This plan has been brought after several discussions with different experts.
The Health Ministry said that such financial assistance will not be limited to BPL families (families falling below the poverty line), but these benefits will be extended to about 40 percent of the population, which is the Pradhan Mantri Jan Arogya Yojana (PM Jan Arogya Yojana). The statement of the ministry said that financial assistance for the treatment of rare diseases has been proposed under the National Health Fund (RAN) scheme and not under the Ayushman Bharat PMJAY.
Important points of ‘National Policy for Rare Diseases 2021’
1. In recent years, there is a need to promote effective and safe treatment for rare diseases. The cost of treatment of rare diseases is very high. Along with reducing the expenses incurred in treating such diseases, the aim of this policy is to focus on research and local production of medicines for the treatment of these diseases in the country.
2. The Supreme Court and various high courts had expressed concern about the lack of a national policy for rare diseases. Research, availability and access to medicines regarding the process of treatment of rare diseases is difficult. The purpose of this policy is to help the country overcome these challenges.
3. On 13 January 2020, a draft of this policy was placed in the public sector and its suggestions and views were sought from stakeholders, general public, organizations, states and union territories. In a statement issued by the Ministry, it has been said that the suggestions received by an expert committee formed by the Ministry of Health have been examined in depth.
4. With the help of Health and Wellness Centers, District Early Intervention Centers and Counseling, the policy aims at early detection of rare diseases and detection of their patients, which can help in preventing and treating such diseases.
5. Those suffering from rare diseases (diseases listed under Group-1 in the Rare Disease Policy), who need treatment once, will get financial assistance up to Rs 20 lakh under the National Health Fund. This scheme will cover about 40 percent of the population, who are eligible under the Pradhan Mantri Jan Arogya Yojana.
6. To ensure sufficient data for those interested in research and development, a National Hospital based rare diseases registry will be created for the definition of rare diseases and rare diseases within the country. Adequate data may be available for associated research and development.
7. The policy also envisages a crowd funding arrangement, in which corporates and people will be encouraged to provide financial assistance through a robust IT platform for the treatment of rare diseases.
What are rare diseases?
The percentage of people suffering from diseases is very less, they are called rare diseases. 80 percent of rare diseases are mainly genetic, so it has the opposite effect on children. Rare diseases include Genetic Diseases, Rare Cancer and Degenerative Diseases. According to a report, about 60 million people in India are suffering from rare diseases.