New Delhi, Aug 27: From zero, India’s budget for rare diseases surged to Rs 82 crore in the last three years, said Dr. L Swasticharan, from the Union Ministry of Health and Family Welfare (MoH&FW) on Tuesday. Rare diseases are conditions having fewer than 100 patients per 100,000 population. While over 350 million people worldwide are affected, about 1 in 20 Indians is affected by the condition.
Swasticharan, Additional DDG with the Directorate General of Health Services (DGHS), said that the government has also established a rare disease fund 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,” Swasticharan said.
“However, we realise that even this is not sufficient as we don’t want to leave any patient behind,” he added. Swasticharan said this while speaking at SMArtCon2024, a two-day National Conference on Spinal Muscular Atrophy (SMA) organised by the non-profit Cure SMA Foundation of India and held in Gurugram.
He also noted that the Health Ministry is “actively considering establishing a specialised Technical Expert Group focusing on SMA”. SMA is 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.
Swasticharan also called for a “synergy between the government and the medical community to address the challenge” of rare diseases in India. “We have a national policy for rare diseases and a mechanism to include more ‘orphan’ diseases in the list. The medical community must come forward and help the government identify priority diseases for attention and treatment as funds are limited. We need to make drugs available and affordable for patients,” he said.
He noted that the government is also “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,” the expert noted.
There are more than 7,000 rare diseases known or reported worldwide. About 80 per cent are genetic in origin -- 50 per cent are onset at birth and the rest are late onset. Rare diseases include inherited cancers, autoimmune disorders, congenital malformations, and infectious diseases amongst others including Hemangiomas, Hirschsprung disease, Gaucher disease, cystic fibrosis, muscular dystrophies, and Lysosomal Storage Disorders.
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