Providing relief to patients with rare diseases across India, the Union Health Ministry has made available generic drugs to support the care and treatment of four ailments: Tyrosinemia-Type 1, Gauchers Disease, Wilson’s Disease, and the Dravet-Lennox Gastaut Syndrome. This means that the cost of these drugs will be slashed by anywhere between 60 and 100 times of their current market value.
The Ministry is also in the process of making available drugs for more rare diseases, including Phenylketonuria and Hyperammonemia, over the next few months. “The approvals for these drugs are awaited,” said V.K. Paul, NITI Aayog’s member with expertise on health issues. He added that this initiative would also result in patients’ costs dropping from crores annually to mere lakhs. Additionally, a sickle cell disease drug formulation will now be made available for children.
A rare disease is a health condition of particularly low prevalence that affects a small number of people. It collectively afflicts 6-8% of the population in any country at any given time, so India could have 8.4 crore to 10 crore such cases, according to the Ministry. Nearly 80% percent of these diseases are genetic in nature.