Continuing to ensure aid to patients suffering from rare diseases, the Delhi High Court has asked the Centre to take urgent steps to make the National Policy for Treatment of Rare Diseases functional at the ground level.
“This Court is of the view that urgent steps need to be taken by the Ministry to make the National Policy functional at the ground level. This Court directs the Ministry of Health and Family Welfare to constitute the Inter-Ministerial Consultative Committee as well as a Central Level Technical-cum-Administrative Committee (as envisaged in the national policy) within a period of three weeks,” Justice Manmohan said.
He directed the ministry to file a status report on or before November 30.
Meanwhile, the court also said in its order that the “Delhi Government, in view of the already existing National Policy for Treatment of Rare Diseases, is also directed to follow up with the Government of India and submit a proposal for utilising the funds from the available corpus and ensure that State Level Committee as envisaged is formed and treatment of patients commences at the earliest”.
The court was hearing a batch of petitions filed by patients of rare diseases like Gaucher, who have been denied treatment at ESIC hospitals and do not have the capacity to bear the cost of Enzyme Replacement Therapy (ERT).
Petitioners’ advocate and activist Ashok Agarwal has been highlighting how the poor patients have been running from pillar to post to get treatment. In one such case, a man lost most of his vision awaiting even the first round of ERT. Another teenage girl is being made to run between ESIC hospitals in Faridabad and Delhi on the issue of domicile.
On Justice Manmohan’s recent order for early implementation of the national policy, Agarwal said, “The HC is doing its best to see that National Policy for Treatment of Rare Diseases really works on ground and no patient having such disease should die just for want of treatment. This policy, if works, would go a long way in establish right to public health that is presently lacking seriously”.
It is to be noted that the high court had on November 3, 2016, directed the Centre to formulate a national policy for treatment of rare diseases within six months.
The expert committee, under the chairmanship of secretary (Health), felt the need to work out the cost of equipment, HR requirements etc required to establish new/ separate labs for diagnosis of rare diseases.
The national policy goes beyond treatment funding and takes a more holistic approach towards rare diseases encompassing suggestions towards prevention, awareness, training, research, and development in diagnosis, development and manufacturing of drugs at affordable prices, provision of insurance coverage etc.
The policy envisages setting up of a technical-cum-administrative committee within the Ministry of Health And Family Welfare, both at the Central and the state levels, for handling of the corpus fund.
It also stresses on creation of a corpus fund at the Central and the state level for treatment of rare diseases on the basis of technical criteria developed by the technical committee.
It recommends creating provision for online applications for funding from the corpus fund and creating a patient registry for rare diseases housed in ICMR.
As part of long-term measures, the policy envisages taking legal and other measures to control the prices of drugs for rare diseases to ensure its affordability and for health system sustainability, ensuring insurance coverage for rare genetic disorders.