Gurugram: Dr L Swasticharan, Addl. DDG with DGHS, Ministry of Health and Family Welfare (Mohfw) while speaking at SMArtCon2024, a two-day National Conference on Spinal Muscular Atrophy (SMA) said that rare diseases have received increased attention from the Indian Government in recent years, with budgetary support for the treatment of patients jumping from zero to Rs 82 crores in three years. Dr L Swasticharan announced that Mohfw is actively considering establishing a specialised Technical Expert Group focusing on Spinal Muscular Atrophy, a rare and genetically inherited neuromuscular disease that robs people of physical strength by affecting motor nerve cells in the spinal cord. “Called Tech MSA, the Group will advise centres 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,” he added.
Dr Swasticharan said further said, “A rare disease fund has been established by the Government to support the 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 realise that even this is not sufficient as we don’t want to leave any patient behind.”
Dr Swasticharan added, “Awareness of rare diseases is low even amongst clinicians, and not many of them are working in this area. A synergy is required between the government and the medical community to address the challenge. We have a national policy for rare diseases and a mechanism to include more ‘orphan’ diseases in the list. We need 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 specialised clinics for rare diseases where patients can go for treatment.”
