The Delhi Government took an important step to make the process of providing treatment to rare disease patients faster by proposing the setting up of a Technical cum Administrative Committee for rare diseases in the High Court.
The Committee will also set up a state corpus for the treatment of rare disorders. The government of India has allocated Rs. 100 crore corpus for these disorders under the national policy for rare diseases and would contribute funds towards the state in the ratio of 60:40.
The significant mandates of the Committee include identification and accreditation of institutions which will carry out the diagnosis and treatment of rare condition. There will also be a Rare Disease Board and will review the patient applications and handle other technical details.
Then it will be forwarded to the state technical committee which will accordingly decide upon the funding of a particular patient. The applications which the State Board will review would be submitted at a website which is being created by the central Government as a part of the national policy.
Social Jurist Advocate Ashok Agarwal commented, “The process would be streamlined and will result in providing the patients treatment without further loss of time."
The Committee would include the senior doctors from AIIMS and MAMC and other such renowned institutions. It will be chaired by Principal Secretary (Health).
The High Court has also directed that the Committee and rare disease board meet once every three months.