50 children to get free lifelong access to drug for SMA treatment 

Fifty children, who have been diagnosed with Spinal Muscular Atrophy (SMA), will receive free lifelong access to Risdiplam, an oral treatment for SMA, thanks to Care and Protection of Children Trust (CPCT), an NGO aiming to support people with rare diseases.

The CPCT has signed an agreement with Roche Pharma India to procure Risdiplam, the first and only drug approved by the Drugs Controller General of India (DCGI) for the treatment of SMA. Under the Free Medicine Access Programme (F-Map), children will receive continuous care and access to treatment at the Indira Gandhi Institute of Child Health, Bengaluru, where a Centre of Excellence for Rare Diseases was established by the Karnataka government.

For children up to 16 years

Children up to the age of 16 years can avail the assistance. SMA is a rare genetic disorder that severely impacts muscle strength and motor functions, often leading to life-threatening complications, if untreated.

Mr. Gundu Rao, Minister for Health & Family Welfare, expressed hope that the programme would give the children a fair and solid chance to battle a debilitating condition like SMA and pave the way for a brighter future.

“We are sure that with the free drug support of Risdiplam, a disease-modifying therapy which can be administered orally in the comfort of one’s home, these children will benefit immensely. We hope that this partnership in the State will serve as a role model to scale the programme in other States too,” said Mr. Lakshmi Kanthan, chairman - CPC Trust. F-Map has been specially curated by CPCT through funding received under CSR for the treatment of rare conditions.

Dr. Sharanprakash Patil, Minister of Medical Education, Health & Family Welfare, said, “This is a first-of-its-kind financial assistance program anywhere in the country. We are delighted that SMA patients in Karnataka will stand to benefit immensely.”

Published - November 14, 2024 11:35 pm IST