'Rare ailment treatment needs boost'

Following the Delhi High Court's direction to the central government to ensure that patients with rare diseases are not denied treatment because of unavailability of medicine, Cure SMA Foundation of India, a parent-led patient advocacy organisation for Spinal Muscular Atrophy (SMA), extended its support to help the government agencies in hastening the process of medicine procurement.

The Ministry of Health & Family Welfare has earmarked 900+ crore for rare diseases, including SMA, for initiating centralised procurement of rare disease treatments.

At a press conference on Wednesday, CureSMA urged the government to initiate the procurement process as directed by the court within 45 days, and said they would help in the process.

According to Union Health Ministry estimates, India has a staggering 8.4 to 19 crore individuals affected by rare diseases. Among these, SMA is a severe, progressive genetic condition that affects essential physical abilities like walking, eating, and breathing. It is also the leading genetic cause of death among children worldwide.