TWO RECENT INTERIM ORDERS of the Supreme Court have pushed the lives of people living with rare diseases to the edge. These two orders were passed in two separate special leave petitions (‘SLP’) filed by the Union challenging the High Court orders of Delhi and Kerala which advanced access to treatment for rare diseases. These interim orders virtually blocked any possibility of affordable treatment to many people living with rare disease (‘PLRD’) who need treatments that are available at a high cost such as Spinal Muscular Atrophy (‘SMA’), Cystic fibrosis (‘CF’), Duchenne muscular dystrophy (‘DMD’) etc. Apart from staying the orders of the High Courts, these interim stay orders raise concerns about the scope of the right to life guaranteed under Article 21 of the Constitution. In a letter, nearly 220 mothers and caregivers of children living with SMA and CF have written to the Chief Justice of India (‘CJI’) seeking justice.
The letter requests CJI “to take “suo motu” cognizance of this dire situation and direct the expeditious resolution of pending legal cases concerning rare disease treatments. We further urge the judiciary to reinforce the government’s obligation to ensure access to life-saving medicines through compulsory licensing, price control, and local production to allow price-lowering generic competition, as provided under Indian law”.
