Minister of Health Veena George said that distribution of free medicines to children up to 12 years of age suffering from Spinal Muscular Atrophy, a rare disease, has started. The medicine that was given to children up to 6 years old was made up to 12 years old. In the first phase, 10 children were given the expensive medicine. So far 57 children have been given medicine. When the treatment is increased up to 12 years of age, 23 more children are given medicine.
During the New Kerala audience, Sia Mehrin, a resident of Kozhikode and a SMA sufferer, shared her experience and said that it would be helpful if the supply of medicines for the rare disease was made available to children above 6 years of age. Zia Mehrin was the first to perform free surgery to correct curvature of the spine. The Chief Minister had instructed Minister Veena George to look into the matter and take action. Following this, the minister discussed at the government level and decided last month to provide free medicine to children above 6 years of age.
For the first time in India, a state has started providing free drugs for rare diseases at the government level. In the state, children up to 6 years of age have been given free medicine for more than one and a half years. So far, about 600 units of Risdiplam have been given at a cost of Rs 6 lakh per dose. All these children have recovered and become stronger and more mobile. Children with rare diseases over the age of 6 years have severe problems with spinal curvature, reduced lung function, and reduced mobility. This is how the distribution of medicine to children above 6 years of age has been started by assuming the additional financial burden with the aim of bringing them back to life by giving medicine to these children in a phased manner.
