The Delhi High Court on Wednesday directed the central government to treat a public interest litigation seeking better care for Ichthyosis patients as a formal representation.
The PIL also requests that Ichthyosis, a rare genetic skin disorder, be recognized as a disability under the Rights of Persons with Disabilities (RPWD) Act, 2016.
The bench, comprising Justice Manmohan and Justice Tushar Rao Gedela, instructed the Ministry of Social Justice and Empowerment to address the petition in accordance with the law. The court emphasized the need for a timely decision after consulting relevant experts and giving the petitioner an opportunity to be heard.
The petition was filed by the Center for Ichthyosis Related Members Foundation, represented by advocate Arvind. It highlights the severe challenges faced by individuals with Ichthyosis, including chronic physical pain, mental distress, and social discrimination. The plea also notes that the condition has no permanent cure.
A key issue raised in the petition is the inability of many Ichthyosis patients to obtain identity documents. This is because their skin condition makes it difficult to capture biometric data, such as fingerprints, required for official identification.
The petitioner argued that Ichthyosis meets the definition of a disability under Section 2(s) of the RPWD Act. However, since it is not officially classified as a disability, affected individuals are excluded from various government benefits and protections provided under the Act.
The plea also referenced a notification issued on September 23, 2022, by the Ministry of Women and Child Development, which categorized Ichthyosis as a skin disease requiring long-term treatment. Despite this, patients still face significant barriers to accessing affordable care.
The petition pointed out that on February 17, 2024, the Foundation submitted a report to the Ministry of Health and Family Welfare, which responded on May 3, 2024. The ministry’s response identified 12 centers of excellence for treatment.
However, when the petitioner contacted one of these centers, they were advised to undergo costly genetic testing at NIMS, which is unaffordable for many patients.
Additionally, the petitioner consulted Dr. Pragnya Ranganath, who confirmed that the government does not classify Ichthyosis as a rare disease due to the absence of a cure. Another response from Dr. Rashmi Sarkar revealed a lack of awareness about the specific challenges faced by Ichthyosis patients in India.
The court’s directive aims to push for a comprehensive review of the condition, ensuring that those affected receive the necessary care, recognition, and support.
