NEW DELHI: In an attempt to address concerns of people suffering from rare diseases, the Indian Government has come up with a new draft National Policy for Rare Diseases, 2020, that proposes to provide up to Rs 15 lakh to patients needing one-time treatment.
The government has also proposed to facilitate voluntary donations to fund the treatment by creating a dedicated digital platform. It will notify select government hospitals including AIIMS-Delhi, Maulana Azad Medical College-Delhi and Sanjay Gandhi Postgraduate Institute of Medical Sciences-Lucknow to provide treatment to such patients.
The Union health ministry had begun formulating the policy for treatment of rare diseases in 2017. However, it later decided to review the policy due to ‘implementation challenges’ and in view of new information and updates available for its further improvement and effective implementation.
There is no universally accepted definition of rare disease. However, the Indian Council of Medical Research (ICMR) defines rare disease as a disorder with a prevalence of one in 2,500 people or less, the draft says.
The new policy proposes to set up a registry under the ICMR to create a database and provide financial assistance to Ayushman Bharat beneficiaries that require a one-time treatment in tertiary hospitals only.
The Union health ministry has asked all stakeholders to send their comments on the draft by post to Kumar Pranav in Union Health Ministry by February 10, 2020.