So far Spinal Muscular Atrophy (SMA) for children in Eastern India had no medication for treatment. Patients were managed through diet, physiotherapy and management of overall health quotient. SMA being a neuromuscular disorder, the children have limited mobility and are mostly wheelchair bound although their intelligent quotients in most of the cases are very high.
After a lot of research medications have been launched two years back but only in the West, and India was far from reaching to them. After crossing several procedural hurdles both at government and legal level, Peerless Hospital, Kolkata have been able to become the first Hospital to get approval to use these medications for their SMA patients.Spinraza (Nusinersen) a very effective drug to treat this condition that has to be administered intrathecally was given under the Compassionate Use Programme (CUP) for the first time in Eastern India in Peerless Hospital.
Dr. Sujit Kar Purkayastha, Managing Director under whose leadership the SMA Clinic has been commissioned with Cure SMA Foundation of India, has seen patients from the North Eastern States, neighboring States of Bihar, Jharkhand and also from across the border from Bhutan and Bangladesh. “When we hosted the first National Conference on Spinal Muscular Atrophy in 2019, we were hopeful to spread awareness about this disease and could sensitize doctors and patients alike with the support from the media. The Ethical Committee of Peerless Hospital has been instrumental to fight the legal battles and the Finance Department worked out logistics to lay inroads to get the donated medications from abroad. Above all, the whole initiative which have been sphere headed by Dr. Sanjukta De, has added a paradigm elevation to the core values of the Peerless family towards clinical excellence,” said Dr. Purkayastha.Dr. Sanjukta De, Clinical Director, Paediatrics and Neonatology and Project Head SMA, says, ”It was an exhilarating moment for me and my team who made this dream come true. There are two drugs for the treatment of SMA – Risdiplam the oral medication costing approx. 1.5 crores per patient per year, is being given free of cost under CUP for 7 children and Nusinersen or Spinraza an intrathecal medication that is also being given free to the children under CUP which costs approximately 2.5 crores per patient per year. This prohibitively expensive drug is being provided free by Direct Relief to some of the children of SMA. This is only the first victory as providing medications to all the children has not been possible but is our dream. So we intend to spread awareness to bring on board crowd funding, philanthropists, the Government and NGOs to support these children, as it is a long journey still ahead to secure treatment options to all our SMA warriors“.
This journey would have been incomplete without the joint effort of Cure SMA Foundation of India, a unique parent advocacy group striving towards better care for SMA patients.
This prohibitively expensive drug is being provided free by Direct Relief to some of the children of SMA. This is only the first victory as providing medications to all the children has not been possible but is our dream. So we intend to spread awareness to bring on board crowd funding, philanthropists, the Government and NGOs to support these children, as it is a long journey still ahead to secure treatment options to all our SMA warriors’.
This journey would have been incomplete without the joint effort of Cure SMA Foundation of India, a unique parent advocacy group striving towards better care for SMA patients.
