Centre releases Rs 22.20 cr for treatment of patients with rare diseases

The Union Health ministry has released Rs 22.20 crore for 134 patients undergoing treatment for rare diseases at eight designated hospitals since the guidelines for providing financial aid to such patients were issued last August.

On May 19, the ministry increased the financial support from Rs 20 lakh to Rs 50 lakh for patients belonging to all categories of rare diseases, and on August 11 issued guidelines to grant financial aid to such patients under the National Policy for Rare Diseases, 2021.

According to officials, the number of Centres of Excellence (CoEs) designated for treating those with rare diseases like Gaucher Disease, Tyrosinemia, Severe Combined Immunodeficiency (SCID) and others have also been increased from eight to eleven.

The 11 CoEs are AIIMS, New Delhi, Maulana Azad Medical College, New Delhi, Sanjay Gandhi Post Graduate Institute of Medical Sciences, Lucknow, Post Graduate Institute of Medical Education and Research, Chandigarh, Centre for DNA Fingerprinting and Diagnostics with Nizam's Institute of Medical Sciences, King Edward Medical Hospital, Mumbai, Institute of Post-Graduate Medical Education and Research, Kolkata, Centre for Human Genetics with Indira Gandhi Hospital, Bengaluru, AIIMS Jodhpur and SAT Hospital, Kerala.

"Since the guidelines were issued, applications from patients seeking financial assistance have been received from eight CoEs of which Rs 22.20 crore have been released for the treatment," an official source told PTI.

The budget allocation for the financial year 2022-2023 for rare diseases was Rs 25 crore. Rest of the 2.80 crore will soon be disbursed for the treatment of rare disease patients, the source said.

The guidelines mentions that a maximum financial assistance admissible under the scheme will be up to Rs 50 lakh per patient and the financial assistance per patient will be given to the concerned CoE, where the patient is getting treatment, it said.

As envisaged in the policy, the state governments shall also support patients of rare diseases.

The guidelines also mention about the crowdfunding portal which was setup in August 2021 for receiving voluntary funds for patients suffering from rare diseases.

There are three groups in which patients diagnosed with rare diseases have been classified.

Group 1 includes disorders amenable to one-time curative treatment while

Group 2 includes diseases requiring long-term lifelong treatment having relatively lower cost of treatment, and the benefit has been documented in literature.

Under group 3 falls those diseases for which definitive treatment is available but challenges are to make optimal patient selection for benefit, very high cost and lifelong therapy.