The Indian Government is intensifying its focus on rare diseases, with funding for patient treatment rising from zero just three years ago to Rs 82 crore today, as disclosed by Dr. L Swasticharan, Additional Deputy Director General (Addl. DDG) with the Directorate General of Health Services (DGHS),
Ministry of Health & Family Welfare (MoH&FW). Speaking at SMArtCon2024, a national conference on Spinal Muscular Atrophy (SMA) held in Gurugram during the ongoing SMA Awareness Month, Dr. Swasticharan revealed that the Ministry is actively considering the formation of a specialised Technical Expert Group dedicated to SMA. Spinal Muscular Atrophy is a genetic disorder characterised by muscle weakness and atrophy due to the loss of motor neurons that control movement. It predominantly affects infants and young children, with varying degrees of severity depending on the type
The proposed group, named Tech SMA, will provide technical guidance to centres of excellence on rare diseases throughout the country. "Successfully addressing the challenge of SMA could serve as a model for effectively tackling other rare diseases in India," Dr. Swasticharan noted.
SMArtCon2024 was organised by the Cure SMA Foundation of India to foster a sustainable ecosystem for SMA and other rare diseases. The conference drew over 80 leading doctors from across India, along with medical students, researchers, therapists, and SMA patients and their families from various regions including Jammu, Coimbatore, Varanasi, Punjab, Odisha, Jaipur, and Delhi NCR.
Dr. Swasticharan highlighted the Government’s efforts to support rare disease treatment, noting that in the 2022-23 fiscal year, 203 patients received financial support totalling Rs 35 crore. This figure has increased to Rs 74 crore in 2023-24, and a budget of Rs 82.4 crore has been allocated for the current fiscal year, with Rs 34.2 crore already disbursed. "However, we recognise that this is not enough, as we aim to ensure no patient is left behind," he added.
The conference also addressed the importance of raising awareness about rare diseases among clinicians, who often lack sufficient knowledge in this area. Dr. Swasticharan called for a stronger synergy between the Government and the medical community to identify priority diseases and make treatments more accessible and affordable.
Moumita Ghosh, Co-founder & Director of Family Support & Events at Cure SMA Foundation of India, emphasised the urgency of addressing SMA, which affects approximately 4,000 children born in India each year. "SMA is the leading genetic cause of death among infants. The treatment is so expensive that it is beyond the reach of most patients. We need increased budgetary support and immediate action to ensure no child is left to deteriorate," Ghosh urged.
Dr. Rakesh Mishra, Director of the Tata Institute for Genetics and Society (TIGS), highlighted ongoing collaborations with the Cure SMA Foundation to develop cost-effective diagnostic assays for SMA. "Delayed diagnosis is a significant issue in rare diseases. Accurate and timely diagnosis is crucial for effective treatment," Dr. Mishra stated.
The conference featured two symposiums with multiple sessions focused on patients, families, policymakers, clinicians, and researchers, covering topics such as indigenous research in SMA, advancements in disease-modifying therapies, and multidisciplinary supportive care for rare diseases. SMArtCon2024 was held in collaboration with the Academy of Child Neurology, the Society for Indian Academy of Medical Genetics, the Tata Institute of Genetics and Society, and Artemis Hospital in Gurugram.
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