On April 3, a major report stated that the Union Health Minister has approved the National Policy for Rare Diseases that will reduce the high cost of treatment of rare diseases and will also increase focus on domestic research.
What does The Policy Say?
Besides lowering the cost, the policy will focus on the early screening and prevention of rare diseases. To cover the cost of treatment of rare diseases, the latest policy will make use of a crowdfunding mechanism. Under the Rashtriya Arogya Nidhi, the persons who are suffering from rare diseases will get Rs 20 lakh for their treatment. The report read, “The policy envisages the creation of a national hospital-based registry of rare diseases so that adequate data is available for the definition of rare diseases and research and development related to rare diseases within the country”. Specific concerns were expressed by the Supreme Court and various high courts about the lack of a national policy for rare diseases. So, this latest policy aims to help the nation overcome the challenges faced by rare diseases.
Impact of The Policy on The Common People
The common people will be benefitted a lot from the policy. The policy will lower the cost of the treatment of rare diseases which was much needed by the common people. Due to the lack of proper treatment of rare diseases, many people have died in India. The crowdfunding mechanism will also address the major challenge of the lifelong care of the patients.
TPT Policy Advocacy & Recommendations
- The policy is a good start as it will give proper treatment to everyone despite having no funds. Also, the sustainable funding mechanism will help the common people a lot as it will cover the high cost of the treatment.
- Many patients with rare diseases remain undiagnosed for a long time. So, the approval of the Minister to the policy was much needed as it will focus on the early screening of rare diseases.