NEW DELHI — A new initiative by the Government of India in the form of a crowdfunding program to treat rare diseases with the help of a portal has received over 31 registrations in a week.
“We don’t see rare diseases common in the general public,” said Sameer Sethi, president of the Indian Rett Syndrome Foundation (IRSF).
“It becomes difficult to diagnose, and cost of treatment is also very high. The government has done the right thing to launch a new rare disease policy, and it is a good step.”
Under this program, corporates and individuals can donate online to treat patients suffering from rare diseases.
The treatment of rare diseases is expensive and can continue for an extended period.
Eight centers have been authorized to receive donations and treatment in India, as per a senior Indian Health Ministry official.
These centers are All India Institute of Medical Sciences and Maulana Azad Medical College in New Delhi; Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow, PGI Chandigarh, Centre for DNA Fingerprinting and Diagnostics at the Nizam Institute of Medical Sciences, Secunderabad; King Edward Memorial Hospital, Mumbai; Centre for Human Genetics with Indira Gandhi Hospital, Bengaluru; and the Institute of Postgraduate Medical Education and Research, Kolkata.
“As per the portal, the presently registered numbers are 31,” said the health official.
“They are in different hospitals like AIIMS that has 2; Maulana Azad has 2, Sanjay Gandhi PGI and Lucknow has 12, PGI Chandigarh 4, etc. This is the portal where a donor can register themselves and then they can give donations hospital-wise and patient-wise.”
The program has not been formally launched but is expected to be introduced soon.
“60 people have registered themselves for the donations on the portal so far. Once people are aware of this portal, then more donations will come,” the senior official said.
“The donations will come patient-wise. It will be very transparent and meant for the patients. There is an expert committee in the hospitals which will decide upon the need for the donation and what will be for the better treatment for the child.”
The National Policy for the treatment of rare diseases classifies rare diseases into three categories.
“The first one is of diseases that need a one-time, usually expensive treatment,” said Samir. “Treatment for these is covered under Rashtriya Arogya Nidhi (RAN), which is a dedicated fund available with the Ministry of Health for funding treatment up to INR 15 lakh ($20,176.64).”
“Rare diseases like Lysosomal Storages (LSDs) or for immune deficiency disorders are classified as rare funded for Ran up to INR 20 lakh ($26,901.46) for people under the below poverty line mark and those who are registered under Pradhan Mantri Jan Arogya Yojna [Indian government’s health insurance scheme].”
(With inputs from ANI)
Edited by Saptak Datta and Praveen Pramod Tewari
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