The government will provide financial assistance up to 20 lakh rupees under the umbrella scheme of the National Health Fund (Rastriya Arogya Nidhi) for the treatment of rare diseases.
There is good news for people struggling with rare diseases. The government has approved the National Rare Disease Policy 2021. The government will provide financial assistance up to 20 lakh rupees under the umbrella scheme of the National Health Fund (Rastriya Arogya Nidhi) for the treatment of rare diseases. This policy will not only be limited to BPL families, but the beneficiaries of Pradhan Mantri Jan Arogya Yojana will also benefit from it.
The government says that there are many challenges in prevention, treatment and management of rare diseases. Early detection of rare diseases is a major challenge due to various factors, including primary care physicians, lack of adequate screening and treatment facilities. Availability and access to medicines are also important for reducing diseases related to rare diseases and reducing mortality. Effective and safe treatment for rare diseases needs to be promoted. The cost of treatment of rare diseases is very high.
Rare diseases are divided into three groups
The policy also envisages a crowd funding arrangement, in which companies and people will be encouraged to provide financial support for the treatment of rare diseases through a robust IT platform. The funds raised through this will be used by the Centers of Excellence as the first fee for the treatment of all three categories of rare diseases and then the rest of the financial resources can also be used for research.
The policy also aims to strengthen health care facilities for prevention and treatment of rare diseases through 8 health facilities. The COE will also provide one-time financial support up to Rs 5 crore for the improvement of the diagnostic facilities.
7 to 8 thousand rare diseases
Let us know that there are 7000 to 8000 rare diseases, but less than 5% of this treatment is available. About 95 percent of rare diseases have no approved treatment and less than 1 in 10 have specific treatment. Medicines for some rare diseases are available which are quite expensive.
