In a move to expedite the implementation of the National Policy for the Treatment of Rare Diseases, which recommends an initial corpus of Rs 100 crore for the treatment of genetic disorders, the Centre has proposed setting up of a technical and an administrative committee which will identify and accredit hospitals in every state to carry out timely treatment of rare diseases in patients. The state will shell out 40% of the designated corpus (the total of which is Rs 100 crore) to the treatment of these patients. The Centre is also in talks with the Department of Pharmaceuticals to slash import duty on medicines required for the treatment to increase the affordability among patients suffering from rare diseases, Lav Agarwal, Joint Secretary, Ministry of Family and Health Welfare, told this newspaper.
“The guidelines drafted by the central technical committee will be submitted to the technical committees of various states, which will then decide the funds to be allocated to patients depending upon their case history. To ensure that the process is carried out in a transparent fashion without any hassles or delays, all applications and details of funding and treatment will be uploaded on the website which is being created by the Central government. The entire operation would be carried out online, and, hence, would be less cumbersome,” Lav Agarwal said.
Ashok Aggarwal, a lawyer in the Delhi High Court, who had filed three writ petitions in the Health Ministry for the formulation of a national policy on rare diseases, said that the Centre has instructed all states to form an expert technical committee. The states, however, are not complying.
“We are planning to file a PIL in the Supreme Court next month regarding the dereliction of duty by the states. Delhi has already formed a similar committee, and other states need to follow suit, too. We have seen through multiple RTIs that the states do not cooperate, and even when the designated corpus is provided to them by the Centre, they deny having any funds at all.”
Presently, no insurance company is reimbursing the cost of treatment of these diseases. However, the Employee State Insurance Corporation, under the Indian law, is required to sponsor the full treatment of its beneficiaries. “ESIC often tries to play corrupt by denying funding to its 12 crore beneficiaries. We have sent a notice to the Directorate General of Health Services Delhi in the past regarding corruption in the ESIC, and they have looked into it. The Centre is doing its bit to ensure an early and smooth implementation of the policy, and we are hoping the states will do their bit too.” The draft of the policy was submitted by the Ministry of Health and Family Welfare to the Delhi High Court on 25 May 2017. The policy saw the light of the day after multiple representations to the Central government and the Ministry of Health and Family Welfare were made by lawyers and organisations working for the treatment of rare diseases since 2009.