Through the efforts of the Care and Protection of Children Trust (CPCT), 50 Karnataka children who have been diagnosed with Spinal Muscular Atrophy (SMA) will have free lifetime access to Risdiplam, an oral medicine for SMA. SMA is an uncommon genetic condition that significantly impairs motor skills and muscle strength. If left untreated, it can have potentially fatal consequences. The program’s goal is to give these kids ongoing, life-saving care as part of the CPCT’s Free Medicine Access Programme (F-Map).
Risdiplam, the first and only medication approved by the Drugs Controller General of India (DCGI) to treat SMA in the nation, is being acquired by the CPCT in collaboration with Roche Pharma India. Children will have free access to the drug under the conditions of this arrangement at the Indira Gandhi Institute of Child Health in Bengaluru, which is home to a Centre of Excellence for Rare Diseases established by the Karnataka government. Specialised care for uncommon illnesses like SMA is what the centre is intended to provide.
Children up to the age of sixteen are eligible for the program, which will guarantee continued care and monitoring in addition to the medicine. By providing a treatment that can be given at home, this project seeks to assist families and children who are struggling with this crippling illness and greatly enhance the quality of life for those who get it.
The Health and Family Welfare Minister, Mr. Gundu Rao, was upbeat about the scheme, saying it will give these kids a chance to fight SMA and open the door to a better future. He went on to say that the program’s success might serve as a template for comparable projects in other states.
The significance of this collaboration was underlined by Mr. Lakshmi Kanthan, chairman of CPCT, who pointed out that Risdiplam is a disease-modifying medication that, when taken regularly, might significantly help the children involved. He emphasised the partnership between the government, pharmaceutical firms, and non-profit organisations to combat rare diseases, pointing out that the F-Map program is made possible by Corporate Social Responsibility (CSR) financing.
The project was praised as the first financial aid program of its sort in India by Karnataka’s Minister of Medical Education and Health & Family Welfare, Dr. Sharanprakash Patil, who also expressed hope that it will have a long-lasting effect on the state’s SMA patients.
SOURCE :
THE HINDU
