Health Ministry to set up Technical Expert Group for SMA, budget for rare disease increased to Rs 82 crore in 3 years

New Delhi: The Indian government is ramping up its focus on rare diseases, with a significant increase in funding for treatment and the potential establishment of a Technical Expert Group on Spinal Muscular Atrophy (SMA).

Dr. L Swasticharan, Additional Director General at the Directorate General of Health Services (DGHS), announced these developments at SMArtCon2024, a two-day national conference on SMA held in Gurugram.

The government’s budget allocation for rare diseases has surged from zero three years ago to Rs 82 crores this fiscal year.

Dr. Swasticharan highlighted, “Called Tech SMA, the Group will advise centers of excellence on rare diseases spread across the country on what needs to be done regarding SMA and provide technical inputs. If we can successfully solve the challenge of SMA, the same model can be replicated for other rare diseases in the country.”

SMArtCon2024, organized by the Cure SMA Foundation of India in collaboration with Academy of Child Neurology, Society for Indian Academy of Medical Genetics, Tata Institute of Genetics and Society, and Artemis Hospital (Gurugram), brought together over 80 doctors, medical students, researchers, therapists, and SMA patients from across India such as Jammu, Coimbatore, Varanasi, Punjab, Odisha, Jaipur, and Delhi NCR. The conference featured two symposiums with 12-15 sessions addressing SMA research, disease-modifying therapies, and multidisciplinary supportive care for rare diseases. 

Dr. L Swasticharan commented, “A rare disease fund has been established by the Government to support treatment of patients. In 2022-23, we supported 203 patients to the tune of Rs 35 crores, a big leap from zero funds three years ago. In 2023-24, this amount rose to Rs 74 crores. In the current fiscal, a budget of Rs 82.4 crore has been assigned for the purpose, out of which Rs 34.2 crore has already been disbursed. However, we realize that even this is not sufficient as we don’t want to leave any patient behind.” 

Dr. Swasticharan also emphasized the need for greater synergy between the government and the medical community to improve rare disease care. He urged the medical community to come forward and help the Government identify priority diseases for attention and treatment as funds are limited and to make drugs available and affordable for patients. “For this, the Government is focusing on indigenous research and production, supportive therapy, and CSR funding. We are requesting pharma companies to provide funds to set up specialized clinics for rare diseases where patients can go for treatment,” he said.

Moumita Ghosh, Co-founder & Director at the Cure SMA Foundation of India, stressed the importance of increased budgetary support and better accessibility to treatment. “Around 4,000 children are born every year with SMA in India. It is the number one genetic cause of death for infants. The ultimate solution lies in indigenous research but that will take several decades. Meanwhile, we cannot just leave the current patients to deteriorate and die,” she said.

Dr. Rakesh Mishra from the Tata Institute for Genetics and Society highlighted ongoing efforts to develop cost-effective diagnostic assays that can accurately diagnose SMA and its type.

Additionally, SMA patient Rustam shared his perspective, urging society to recognize the contributions of SMA patients and provide opportunities for inclusion and productivity. “We SMA patients are achievers and give our 200% to every endevour, as we have no other option. We are focused and determined. We can deliver many times more value than what an able-bodied person can. The society should give us a chance to join the mainstream and become productive members.”

Several prominent figures were also present at the conference including Dr. DK Sable, Deputy Drugs Controller, CDSCO; Dr. Debashish Chowdhury, Director, Professor & Head of Neurology, GIPMER; Dr. Sheffali Gulati, Head of Pediatric Neurology, AIIMS Delhi; Dr. Ratna Dua Puri, Chairperson of the Institute of Genomics, Sir Gangaram Hospital; Ipsita Mitra, Deputy Secretary, Department of Empowerment of Persons with Disabilities, Ministry of Social Justice & Welfare; Swarnendu Singha, Under Secretary, MoH&FW; Dr. (Brig) Ranjit Ghuliani, Professor, School of Medical Sciences & Research, Sharda University and Sharda Hospital; and Prof. (Dr.) Sanjeev Sharma, Pro Vice-Chancellor & Registrar, Sushant University, Gurugram.