The Kerala High Court on Wednesday impleaded the Secretary of Ministry of Health and Family Welfare as a respondent in the suo motu public interest writ petition seeking inclusion of 'Congenital Adrenal Hyperplasia' as a rare disease under the National Policy for Rare Diseases.
The division bench of Chief Justice S. Manikumar and Justice Shaji P. Chaly, passed the interim order, after noting though the Central Technical Committee for Rare Diseases (CTCRD) had examined the case and opined that Congenital Adrenal Hyperplasia (CAH) disease could be categorized as a Rare Disease under Group 2 in the policy, a notification has to be issued by the Central Government so that support can be availed by the patients.
The 2021 policy enables authorities to provide financial aid for treatment of the patients suffering from rare diseases. The court had initiated the suo motu case on the letter of a woman seeking financial aid as her two minor children are ailing from Congenital Adrenal Hyperplasia. She has told the court that her eldest child is 90% autistic and unable to fulfil his physical needs, cannot attend school and also requires constant care and companionship.
Central Government Counsel Jaishanker V. Nair informed the Court that the CTCRD had sent its opinion regarding inclusion of the disease as a Rare Disease, in reply to the representation of the woman, who has approached court.
"Though the Committee has opined that the abovesaid disease can be categorized as a rare disease, under Group 2, as per the National Policy for Rare Diseases, 2021, a notification has to be issued by the Central Government," the court said.
To ascertain further steps taken by the union ministry regarding issuance of notification based on the opinion of the CTCRD, the court said:
"We deem it fit that the Secretary to the Government, Ministry of Health and Family Welfare, Government of India, New Delhi should be impleaded as a party respondent in the writ petition, as he is a necessary and proper party for the prayer to be granted i.e., "to include Congenital Adrenal Hyperplasia in the group of rare diseases to grant financial aid and support to the patients".
The court has directed the Registry to array the Secretary as additional respondent in the case and posted the matter for further hearing on November 3.