Patients of rare diseases urge Union Health Minister help for faster treatment at Govt hospitals

The patients registered with the Centres of Excellence (CoEs) in Delhi -- AIIMS and Maulana Azad Medical College (MAMC) -- have been diagnosed with Lysosomal Storage Disorders (LSDs) like MPS I, MPS II and Pompe, Fabry, the letter in Hindi said.

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All these conditions are classified as Group 3(a) in the National Policy for Rare Diseases 2021, for which the ministry had announced funding support for treatment up to Rs 50 lakh in 2022, it said.

Fahim Rayeen, a four-year-old patient registered with the All India Institute of Medical Sciences (AIIMS) Delhi passed away in December 2022 while awaiting treatment, the letter said.

Twelve others are currently under bridging therapy support from pharma companies which implies that none of the eligible patients have been put on the life-saving Enzyme Replacement Therapy (ERT) as per the NPRD 2021, the letter stated.

"My son was diagnosed with Gaucher disease and had his application uploaded on the national crowd funding platform. We even approached AIIMS Delhi for treatment multiple times but were turned away every time," said the father of Yusuf Khan.

"He could have easily been put under treatment with the Rs 50 lakh funding support, but the lackadaisical attitude of the CoE cost him his life," he added.

It has been close to 14 months now since the health ministry announced the revised Rs 50 lakh provisioning to all categories of rare disease patients in May 2022, without which they will be left waiting for the inevitable if not put on treatment immediately, the letter said.

The caregivers also highlighted the problems they face on a regular basis while commuting as quite a few of them have to travel to another state due to the absence of a CoE in their home state.

Some of them even alleged that the administrators at the CoEs were negligent and rude. Several patients are unaware of the funding support provided by the government, as the CoE has not made any effort to inform them, the letter highlighted.

"Through this note, we would request your timely intervention in this regard as it will not only address the lack of urgency and empathy on the part of AIIMS Delhi and MAMC towards these patients but also help put them on immediate treatment, preventing any further loss of lives," they said in the letter. RHL

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