The Delhi High Court has set up a special committee to find a time-bound solution on ways to provide treatment and therapy options to patients suffering from rare diseases.
Justice Prathiba M. Singh ordered the committee to also give “immediate concrete proposals for crowdfunding of the costs of treatment for children with rare diseases”.
The nine-member committee includes Renu Swarup, Secretary of Department of Biotechnology; Prof. Madhulika Kabra, AIIMS; I.C. Verma Director, Sir Ganga Ram Hospital; and Arun Shastry, Dystrophy Annihilation Research Trust (DART).
Exorbitant cost
The High Court’s direction came while hearing a bunch of petitions filed by patients suffering from rare diseases such as Duchenne Muscular Dystrophy (DMD) and Hunter’s syndromes seeking direction to the government to provide them uninterrupted free treatment in view of the exorbitant cost of treatment.
DMD is a condition that causes progressive muscle degeneration and weakness in the victim. Hunter’s syndromes is a rare disease that is passed on in families. It mostly affects boys and their bodies cannot break down a kind of sugar that builds bones, skin, tendons, and other tissues.
The High Court, in its order, also noted that Dr. Shastry from DART and the Central Drugs Standard Control Organisation, has indicated that clinical trials are already under way in India for drugs/therapies for the treatment of DMD.
“In view of the fact that there are various therapies for DMD which are already being researched upon in India and there are several children suffering from these diseases, the feasibility of accelerated approval processes ought to be examined,” the High Court said.
Justice Singh asked the committee to look into this aspect and also steps to be taken to indigenise the development of the therapies in India, and reasonable timelines required to be followed.
Other members of the committee include P. Ramesh Menon, Associate Professor, Department of Paediatrics, AIIMS; Apurba Ghosh, Institute of Child Health; Angamuthu Meena Kanikannan, Nizam’s Institute of Medical Sciences; V, Viswanathan, Kanchi Karnakoti, CHILDS Trust Hospital, and Pulkesh Kumar, Deputy Secretary, Ministry of Health and Family Welfare.
