The Centre told the Delhi High Court that once the Policy Framework on Rare Diseases is approved, specific cases can be dealt with immediately and patients can be directed to the notified centres in various institutes.
The submissions came as the Court was addressing a batch of writ petitions by parents of children diagnosed with Duchenne Muscular Dystrophy (DMD) who wanted the Court to order the Central Government to provide free care for the rare condition since it comes under the classification of Rare Disease in the Draft Health Policy for Rare Diseases, 2020.
Dr. Renu Swarup, Secretary of the Department of Biotechnology, Government of India, has been questioned by a single-judge bench led by Justice Prathiba M. Singh about the formulation of national policy on chronic illnesses.
The Delhi High Court had previously formed a committee, chaired by Dr. Renu Swarup, and instructed the board to file a comprehensive report on the subject’s key aspects.Specific cases can be dealt with properly once the government announces the national policy on rare diseases under services therein, as per the report.
These patients may be referred to as the various institutes’ notified centres. According to the Department of Biotechnology (DBT), 9 approved centres of specialization will work with the treatment of rare diseases.
The bench also ordered the Central Government to file an affidavit describing the health expenditure for the previous five years, as well as if any portion of the allocation has been unused and could be used for the care of the Appellants or the production of indigenous drugs for the treatment of rare diseases.
Lawcutor 