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National policy for rare diseases notified; Without Financial Help For Illnesses Needing Costly Lifelong Treatment | India News


NEW DELHI: The National Policy for Rare Diseases 2021 (NPRD) was notified on March 31. The policy provides financial support of up to Rs 20 lakh, under Rashtriya Arogya Nidhi, for the treatment of rare diseases (ER) included in group 1 (susceptible to single treatment, either hematopoietic stem cell transplantation or organ transplantation). Recipients of such financial assistance would not be limited to BPL families, but would extend to approximately 40% of the population, which is eligible according to Pradhan Mantri Jan Arogya Yojana, for treatment in government tertiary hospitals only.
However, the NPRD does not provide any financial support for patients with Group 3 diseases, which have definitive treatment but are lifelong and expensive. It is estimated that for a child weighing 10 kg, the annual cost of treatment for some rare diseases can range from Rs 10 lakh to more than Rs 1 crore per year, the treatment being for life and the dose and cost of the drug increases with age and weight. For these patients, the government will establish a crowdfunding platform where volunteers, both corporate and individual, can donate money for their treatment.
According to the WHO, diseases that affect less than 5 people in 10,000 are called rare and there are between 7,000 and 8,000 of this type. Rare diseases affect about 7 crore of Indians. Less than 5% of RD can be treated and, when drugs are available, they are prohibitively expensive, putting enormous pressure on resources. Approximately 80% of RD are genetic in nature and particularly affect children, causing 35% of deaths before one year of age.
According to NPRD 2021, the central government will notify selected ‘centers of excellence’ (COEs), which will be the main government tertiary hospitals with facilities for the diagnosis, prevention and treatment of rare diseases. To begin with, eight of these centers have been notified. These COEs will receive a one-time grant subject to a maximum of Rs 5 crore each for the development of infrastructure for detection, testing and treatment, if such infrastructure is not available.
The policy also sets the government’s intention to raise more awareness about the detection of RD and also develop R&D for the production of expensive drugs necessary for the treatment of Group 3 RD.
However, families of ER patients and their advocacy groups are unhappy with the lack of financial support for patients diagnosed with Group 3 diseases in NPRD 2021. “In the absence of financial support for life-saving therapies, there remain about 130 patients. with no other choice but to wait for the inevitable, ”said Manjit Singh, national president of the Lysosomal Storage Disorders Society of India.
Patients and their support groups had recently written to the health ministry requesting the creation of seed funding of Rs 80-100 crore while the national policy was implemented for life-saving therapies to all those patients with treatable Group 3 disorders. , for which DCGI – an approved treatment is available, can be provided, thus reducing any further loss of life.

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