Rare diseases are receiving increased attention from the Indian Government in recent years, with treatment of patients going above Rs 80 crores in some diseases like the Spinal Muscular Atrophy (SMA).
“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. L Swasticharan, Additional DDG with DGHS, Ministry of Health & Family Welfare (MoH&FW) said while addressing the gathering at SMArtCon2024, a two-day National Conference on Spinal Muscular Atrophy held in Gurugram during the ongoing SMA Awareness Month.
