14 November 2024 | News
Care and Protection of Children Trust signs agreement with Roche Pharma India to procure Risdiplam
Tamil Nadu-based Care and Protection of Children Trust (CPCT), a leading NGO committed to alleviating the burden of rare diseases, has announced the launch of a groundbreaking financial assistance initiative aimed at supporting children diagnosed with Spinal Muscular Atrophy (SMA).
As part of this landmark programme, 50 children up to the age of 16 years in Karnataka will receive lifelong free of cost access to Risdiplam, a revolutionary oral treatment for SMA.
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 CPCT’s Free Medicine Access Programme (F-Map), children will receive continuous care and access to treatment at Indira Gandhi Institute of Child Health (IGICH), Bengaluru.
Lakshmi Kanthan, Chairman - CPC Trust said "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 Karnataka will serve as a role model to scale the program in other States too.”
Dinesh Gundu Rao, Minister for Health & Family Welfare, Government of Karnataka said, "This landmark programme will pave the way for a brighter future for these children of Karnataka by giving them a fair and solid chance to battle a debilitating condition like SMA. Programmes like these are in line with the state government’s healthcare vision of providing best-in-class care and treatment for citizens of Karnataka.”
Dr Sharanprakash Patil, Minister of Medical Education - Health & Family Welfare, Government of Karnataka 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.”
The Free Medicine Access Programme (F-Map) is an initiative specially curated by CPCT through funding received under CSR for treatment of rare conditions. CPCT plans to expand the F-Map initiative to cover additional children in the near future.
SMA is a rare genetic disorder that severely impacts muscle strength and motor functions, often leading to life-threatening complications if untreated.