On Saturday, through a press release, it is confirmed that the approval of the National Policy for Rare Diseases 2021 is given by Union Health Minister, Dr. Harsh Vardhan. The policy has been finalized by the Ministry of Home & Family Welfares after multiple consultations with different stakeholders and experts in the area.

The Policy will focus on early screening and prevention through primary and secondary health care infrastructure. It aims to strengthen tertiary health care facilities for the prevention and treatment of rare diseases through designating eight health facilities as the Centre of Excellence. Rs 5 crores will be provided as one-time financial support for the up-gradation of diagnostics facilities.               

With the help of the National Consortium, the Policy will lower the high cost of treatment for rare diseases and also increase research. There will be an increased focus on research and development and also the production of medicines locally will lower the cost of treatment for rare diseases.

To provide research and development related to rare diseases within the country, the policy will focus on the creation of a national hospital-based registry of rare diseases so that adequate data is available for the definition of rare diseases.

Under the Umbrella Scheme of Rashtriya Arogya Nidhi, a provision for financial support up to Rs 20 Lakhs is proposed for the treatment of those rare diseases that require a one-time treatment.

The benefit will not just be limited to BPL families, but extended to about 40% of the population, eligible under Pradhan Mantri Jan Arogya Yojana. Under the Ayushman Bharat Pradhan Mantri Jan Arogya Yojana (AB-PMJAY), patients with rare diseases will be eligible for a one-time treatment.

The rare diseases have been categorized into three groups – disorders amenable to one-time cure treatment; required long-term or lifelong treatment, and diseases for which treatment is available but are facing challenges for selection of benefit.

 The crowdfunding mechanism is mentioned in the policy through which corporations and individuals will extend financial support through IT platforms for the treatment of rare diseases. These funds collected will be used by Centres of Excellence for the treatment of all three categories of rare diseases.

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