The Delhi High Court in the case Master Arnesh Shaw v. Union of India and Anr observed and has stated that a five-member committee so that the National Policy for Treatment of Rare Diseases, 2017 can be implemented in an efficient manner and also in order to ensure that its benefit reach of to the ultimate patients.
The bench headed by Justice Prathiba M Singh in the case observed and has stated that there being a need for certain urgent steps to be taken in close coordination between the medical community, wherein the providers of the therapies for the rare diseases and also for that of the Governmental agencies.
The court in the case noted that the centres for Excellence are not centrally coordinated, wherein it leads to lack of timely availability and adequate therapies for patients with rare diseases – who are mostly children.
Therefore, in the case the five members of the committee are AIIMS doctors wherein comprising of Dr. Nikhil Tandon and Dr. Madhulika Kabra, Secretary of Ministry of Health And Family Welfare or one of his nominee. Thus, the Director General of Indian Council for the Medical Research and for the Drug Controller General of India.
The bench headed by Justice Singh in the case observed and has stated that the mandate of the committee will include procurement of therapies and drugs and creation of associated logistical framework for the administration of treatment for patients with regards to the rare diseases.
The court observed and has stated that the said committee in the case will also recommend necessary steps for indigenisation of therapies and the medicines for rare diseases and also in order to identify the manner in which the same can be made accessible to the lakhs of patients.
Adding to it, the court stated that the said committee while looking 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, thus, the changes needed in the Policy if the same is deemed necessary.
Further, the bench headed by Justice Singh in the case observed and has stated that the committee will also take up the issue of immediate requirement of patients whose treatments have been stopped due to lack of funding and the same being on an urgent basis so that it can be re- commenced.
The court in the case stated that the said committee would be free for contacting the providers or manufacturers or the distributors of the DMD therapies as also other therapies, in a manner in order to ensure immediate commencement for providing of adequate doses for the said patients.
The bench headed by Justice Singh stated that the first meeting of the Committee shall be held between May 17 and May 21, 2023
In the said case, the court was hearing the bunch of petitions concerning the treatment of children who are suffering from rare diseases like Duchenne Muscular Dystrophy and Hunter’s syndrome.
Accordingly, the court listed the matter to be next heard on May 29, 2023.
