The policy had proposed mechanisms under which the Centre and the states would share in a 60:40 ratio the expenses of treating rare diseases. “It is shocking to learn what the ministry is now saying — we’re devastated,” said Prasanna Shirol, executive director of the Organisation for Rare Diseases India. “They’re citing bureaucratic reasons and funds to deny children with rare diseases a chance to live.”No one knows how many children in India suffer from rare diseases which, according to different definitions, have prevalence rates from one or less per 1,000 people to 5 per 10,000 people. Children with rare inborn diseases such as Fabry disease, Gaucher Disease, or Pompe disease require long-term enzyme replacement therapy. Karnataka became the first state in the country in 2016 to negotiate with drug companies and start providing rare disease treatment to eligible children, Shirol said.

Source: The Telegraph December 18, 2018 23:14 UTC