New Delhi: The Delhi High Court has directed the Centre to treat a public interest litigation (PIL) seeking formation of a committee to monitor the care of patients suffering from Ichthyosis, as a representation.
The petition also requested the Ministry of Health and Family Welfare to classify Ichthyosis as a disability under the Rights of Persons with Disabilities Act, 2016 (RPWD Act).
The bench of Justice Manmohan and Tushar Rao Gedela issued the direction on Tuesday and stated that the Ministry of Social Justice and Employment should treat the present petition as a representation and take a decision in accordance with law as expeditiously as possible after giving the petitioner an opportunity of being heard and taking inputs from the concerned experts and committees.
The petition filed by the Centre for Ichthyosis Related Members Foundation through advocate Arvind said that there is no permanent cure for Ichthyosis. Persons affected by this condition face widespread discrimination, causing them to suffer both mentally and physically. The petition has also highlighted that many persons suffering from Ichthyosis do not possess identity documents, as the disease prevents their biometric details from being recorded.
Benefits denied as Ichthyosis not recognised as disability:
It has also stated that Ichthyosis meets the criteria mentioned in Section 2(s) of the RPWD Act, but since it is not officially recognised as a disability, the affected people are denied the benefits available under the Act.
The petitioner has cited a notification dated September 23, 2022 of the Ministry of Women and Child Development, which classifies Ichthyosis as a skin disease that requires long-term treatment. Additionally, the petitioner pointed out that they had submitted a report to the Ministry of Health and Family Welfare on February 17, 2024, and received a response on May 3, 2024.
Petitioner approached Ichthyosis experts:
The response identified 12 centres of excellence, suggesting that any of them could be approached for treatment. However, when the petitioner contacted the head of one of these centres, he was advised to go to NIMS for genetic testing, which is expensive and unaffordable for many patients with severe Ichthyosis.
The petitioner also approached Dr. Pragya Ranganath, who told him that government policy does not classify Ichthyosis as a rare disease due to lack of treatment.
Furthermore, Dr. Rashmi Sarkar's response indicates that she is unaware of the specific challenges faced by Ichthyosis patients in India.
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