MPs seek PM Modi’s intervention for immediate financial support to rare disease patients

New Delhi: A group of MPs from the Rajya Sabha has sought urgent intervention of Prime Minister Narendra Modi to provide immediate financial support to rare disease patients under the government’s RAN scheme to save their lives.

Rashtriya Aarogya Nidhi (RAN) was set up to provide financial assistance to patients, living below the poverty line and who are suffering from major life-threatening diseases, to receive medical treatment at any of the super specialty hospitals or institutes or other government hospitals.

A group of Members of Parliament from the Rajya Sabha, cutting across party lines, have written to Modi, seeking an urgent meeting with him about saving the lives of several young patients, diagnosed with life-threatening rare disease conditions, classified under Group 3(a) in the National Policy for Rare Diseases.

“We would like to seek a meeting with you urgently to discuss the life-threatening risks that many of the young patients, primarily children, are facing and the impending loss of lives due to the lack of immediate support for their treatment,” the letter read.

The MPs noted that despite several pleas to extend the Umbrella Scheme of Rashtriya Aarogya Nidhi (RAN) as a special, one-time provision for treatment of these patients before March 31, 2022, these patients and their caregivers have been left with no option but to wait for the inevitable.

The members expressed concern that the non-utilization of the budgetary allocation under RAN before March 31, 2022, would not only lead to a fund lapse but also deprive many of these eligible patients from seeking life-saving treatment for their conditions, for which the Drugs Controller General of India (DCGI) approved therapies are already available in India since long.

The group includes Congress MPs Vandana Chavan and Fauzia Khan and RJD MP Manoj Kumar Jha, among others.

According to the parliamentarians, even after almost a year of the crowdfunding platform being set up, only a meager amount of Rs 1.16 lakh has been raised so far, as a result of which not a single patient has been put on treatment.

Over 250 Group 3 patients have registered their applications on the portal seeking treatment support, out of which 50 patients are in urgent need of support to start their treatment, they said.

Making a fervent appeal to the prime minister, the group of 22 MPs wrote, “We would also like to draw your attention that the eight designated Centers of Excellence (CoEs) designated under the National Policy for Rare Diseases 2021 had together sought the immediate financial support of Rs 22 crore to provide immediate life-saving treatment to a priority list of 35 patients, mostly children, diagnosed with Group 3 conditions”.

“There have been several instances in the recent past where the allocation under RAN was used to provide the life-saving therapy for Group 3(a), including that in Karnataka and Tamil Nadu. It is in this regard that we would like to meet you in person and seek your support to save these innocent lives, at least for those who need immediate treatment as prioritized by the CoEs, and for which approved therapies are available in India,” the letter said.