New Delhi: The Delhi High Court has instructed the central government to treat a Public Interest Litigation (PIL) concerning the care and recognition of Ichthyosis as a representation. The petition seeks the establishment of a committee to address the challenges faced by patients with Ichthyosis and calls for its classification as a disability under the Rights of Persons with Disabilities Act, 2016 (RPWD Act).
The bench, comprising Justice Manmohan and Justice Tushar Rao Gedela, directed the Ministry of Social Justice and Empowerment to consider the petition, consult relevant experts and committees, and decide in accordance with the law. The Court emphasized that the petitioner should be granted a hearing, and the matter should be resolved expeditiously.
The PIL, filed by the Center for Ichthyosis Related Members Foundation through advocate Arvind, highlighted the lack of a cure for Ichthyosis and the severe discrimination faced by those suffering from the condition. The petition outlined the mental and physical hardships endured by patients and emphasized that many lack identity documents due to the disease’s impact on biometric data capture.
The plea argued that Ichthyosis meets the criteria outlined in Section 2(s) of the RPWD Act. However, since it is not officially recognized as a disability, patients are excluded from the benefits available under the Act.
The petitioner referenced a September 23, 2022 notification from the Ministry of Women and Child Development, which categorizes Ichthyosis as a skin disease requiring long-term treatment. They also cited a report submitted to the Ministry of Health and Family Welfare on February 17, 2024, and a response dated May 3, 2024, identifying 12 centers of excellence for treatment.
Despite this, when the petitioner approached one of the centers, they were directed to visit NIMS for genetic testing, a procedure that is prohibitively expensive for many patients. Additional consultations with experts like Dr. Pragnya Ranganath revealed that government policies do not classify Ichthyosis as a rare disease due to the absence of a cure.
Further communication with Dr. Rashmi Sarkar indicated a lack of awareness regarding the unique challenges faced by Ichthyosis patients in India. The petition underscores the urgent need for recognition, support, and policy intervention to alleviate the difficulties faced by individuals with this debilitating condition.
