The Delhi High Court recently formed a five-member committee to ensure that the National Policy for Treatment of Rare Diseases, 2017, is implemented efficiently and that its benefits reach the ultimate patients.
Justice Prathiba M Singh stated that certain urgent steps must be made in close collaboration between the medical community, providers of therapies for rare diseases, and government organisations.
“Under the current framework, the Centres for Excellence are not centrally coordinated, resulting in a lack of timely availability and adequate therapies for patients with rare diseases, the majority of whom are children,” the court noted.
The committee’s five members are AIIMS doctors Dr. Nikhil Tandon and Dr. Madhulika Kabra, the Secretary of the Ministry of Health and Family Welfare or one of his nominees, the Director General of the Indian Council for Medical Research, and the Drug Controller General of India.
According to Justice Singh, the committee’s scope would encompass the acquisition of therapies and pharmaceuticals, as well as the development of an accompanying logistical framework for the administration of treatment for patients with rare diseases.
The committee will also recommend required procedures for the indigenization of therapies and medicines for rare diseases, as well as determine how they might be made available to lakhs of patients.
“The Committee, while working broadly under the umbrella of the Policy, would undertake a periodic review of the Policy and recommend to the Ministry of Health and Family Welfare, the changes needed in the Policy if the same is deemed necessary,” the court continued.
Justice Singh also stated that the committee will urgently address the matter of patients whose treatments have been halted owing to a lack of financing, so that they can be resumed.
The court stated that the committee would be free to contact the providers, producers, or distributors of DMD therapies, as well as other medicines, in order to assure the early start of supplying appropriate doses for the aforementioned patients.
“The Committee is also free to consult with any other individuals or organizations as Invitees to Committee meetings in order to work towards the overall goal of the Policy. In order to expedite the acquisition of medications or therapies, the Committee may also contact any topic expert or persons with domain knowledge. If any contact information for patients or providers of therapies is required for this purpose, ld. Counsel for the Petitioners, AIIMS, or the ld. standing counsel is free to offer it to the Committee,” the court stated.
While scheduling the case for hearing on May 29, Justice Singh stated that the Committee’s first meeting will take place between May 17 and May 21.
The court was hearing a slew of petitions concerns the treatment of children suffering from rare diseases such as Duchenne Muscular Dystrophy and Hunter’s syndrome.
The petitions before the court seek free care for the patients, which would otherwise be extremely expensive.
