The Delhi High Court has prompted the central authority to contemplate a submission from the Center for Ichthyosis Related Members Foundation, an organization devoted to supporting individuals with Ichthyosis or those connected to them. The plea seeks recognition of Ichthyosis as a disability under the Rights of Persons with Disabilities (RPwD) Act, 2016.
Ichthyosis is a genetic skin condition characterized by dry, thick, scaly skin with a red, rough appearance. As there is no definitive cure, afflicted individuals often face societal discrimination alongside significant mental and physical distress. The condition was designated as a requiring long-term medical care in a government notification issued in September 2022.
According to the Foundation, many affected individuals lack necessary identification proofs due to complications in capturing biometric data attributable to the disease. Although Ichthyosis meets the criteria outlined in the RPwD Act, its absence from the list of recognized disabilities denies sufferers the benefits entitled to disabled individuals under the Act.
In February 2024, the Foundation submitted a detailed report to the health ministry, receiving a response in May suggesting patients engage with any of the 12 designated Centres of Excellence for treatment. These centers recommended genetic testing, a costly process unaffordable for many patients with severe Ichthyosis. Several experts pointed out that current policy does not classify the condition as a rare disease, complicating their understanding of the challenges faced by Ichthyosis patients in India.
Upon hearing the petition, the division bench, including Chief Justice Manmohan and Justice Tushar Rao Gedela, noted that even though the Foundation had approached the Ministry previously, no formal request concerning this petition had been submitted.
The February 2024 communication from the Foundation requested the health ministry acknowledge Ichthyosis as a rare disease under the National Policy for Rare Diseases 2021 rather than a disability under the RPwD Act.
Consequently, the court directed the central government (designated as Respondent No.1) to treat the writ petition as a representation, urging that it be addressed lawfully, with sufficient expedition, after hearing the Foundation and consulting pertinent experts or committees.
Experts identify two primary types of ichthyosis: congenital and acquired. Ichthyosis vulgaris, a common congenital form, occurs in approximately one out of every 250 births. Onset typically occurs in early childhood, with symptom severity ranging from mild to life-threatening conditions such as Harlequin ichthyosis, as outlined in a July 2023 research report from the International Journal of Ayurveda and Pharma Research.