Delhi state government takes a step forward for rare diseases

As an important step towards expediting the process of providing treatment to rare disease patients, the Delhi state government, in the High Court, has proposed the setting up of a Technical cum Administrative Committee for rare diseases.

It 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 states in the ratio of 60:40.

One of the significant mandates of the committee include identification and accreditation of institutions which will carry out the diagnosis and treatment of rare conditions. Moreover, there will also be a Rare Disease Board and will review the patient applications and handle other technical details.

The same would then 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.

Commenting on the development, Social Jurist Advocate Ashok Agarwal said, "This is a very encouraging step by the state government for ensuring that the patients receive timely treatment. What would now be done is that patients' applications would now be processed by the state level technical committee and would then be sent to the central technical committee. This way, the process would be streamlined and will result in providing the patients treatment without further loss of time."

The committee would include senior doctors from renowned institutions like AIIMS and MAMC and will be chaired by Principal Secretary (Health). With respect to the amount required for the initial corpus, the representatives from AIIMS and MAMC would provide an estimate on the basis of the current load of rare disease patients at the respective institutions.

The High Court has directed that the committee and rare disease board meet once every three months.