Part 2: Draft policy on rare diseases
Dr KK Aggarwal
President CMAAO, HCFI and Past National President IMA
A petition in the Delhi High Court regarding directions that government provide free treatment for rare diseases the Delhi High Court in W.P. (C) No. 4444/2016, W.P. (C) No. 7730/2016, and W.P. (C) No. 7729/2013 directed The Ministry of Health to frame in national policy on treatment of rare diseases. The government has issued draft guidelines.
Here are HCGFI suggestions
1. Various countries have used different approaches for funding treatment for rare diseases. European countries cover the cost through their National Health Services. In USA once a happy is approved by FDA the insurance company e will need to cover the cost. In other countries the government for the cost of the treatment for instance in Egypt, Thailand, Argentina, Chile, Peru, Serabia, Malaysia and Philippines.
2. According to the proposed draft policy Ayushman Bharat scheme will cover up to 15 lacs as one time cost for the treatment of curable diseases under category 1 and a crowd funding mechanism will be created for diseases requiring long term treatment un der category 2 and 3.
3. Upto 15 lacs as onetime treatment cost should be considered even for category B and category c patients. The cost of maintenance in them may be covered through a crowd funding mechanism.
4. The department of financial services and IRDA should amend the acts to consider that once a treatment of a rare/ genetic disease has been approved by Indian GCGI the same should be covered under the available insurance cover.
5. Once a treatment is approved by DCGI the same should also be covered by CGHS, PSU, ESI etc
6. Based on this the Ayushman Bharat should also consider up to 15 lac grant for all organ donations apart from sanctioning for rare diseases curable transplants.