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The Delhi High Court has directed the central government to consider a plea from the Center for Ichthyosis Related Members Foundation, a group of people working closely with the people with Ichthyosis or people related to Ichthyosis, to declare the disease as a disability under the Rights of Persons with Disabilities (RPwD) Act, 2016.
Ichthyosis is a rare genetic skin disorder causing dry, thickened and scaly skin that appears rough and red. There is no permanent cure for the disease and people who are affected by it are discriminated against by the public at large and undergo mental and physical agony. It has been classified as a skin disease which needs long term medication, in a notification issued in September, 2022.
The Foundation stated that most of the people suffering from the disease do not possess identity proofs because the disease makes them unfit to allow their biometric details to be captured, and the ailment fulfills the necessary conditions of the RPwD Act. However, owing to it not being categorised as a disability, persons suffering from the disease are exempted from the benefits that a disabled person gets under RPwD Act.
The Foundation had in February, 2024, submitted a report to the ministry of health and family welfare and received response in May, directing the patients to approach any one of the 12 Centres of Excellence it has identified for the treatment.
However, the CoE advised a genetic testing, which is an expensive one and is difficult for severe Ichthyosis patients to afford. It was also told by some experts that as per government policy, the disease cannot be classified as a rare disease, as it doesn't have any cure and they were not aware about challenges Ichthyosis patients face in India.
Hearing the petition, the division bench comprising Chief Justice Manmohan and Justice Tushar Rao Gedela, observed that although the Foundation has approached the Ministry by submitting a report, the request made in the petition has not been raised through a prior representation.
In the letter in February, 2024, the Foundation has requested the ministry of health and family welfare to include Ichthyosis as a rare disease under the National Policy for Rare Diseases 2021 and not as a disability under the RPwD Act.
"Consequently, the present writ petition is disposed of with a direction to Respondent No.1 (Central government) to treat the present writ petition as a representation and to decide the same in accordance with law, as expeditiously as possible, after giving an opportunity of hearing to the Petitioner (Foundation) and after taking input from the concerned experts/committees," ordered the Court.
According to experts, there are two major types of ichthyosis - congenital and acquired and ichthyosis vulgaris is one among the congenital diseases that is most common with an estimated incidence rate of one in 250 births. The disease has an onset in early childhood and the severity of symptoms can vary from mild to life threatening condition such as Harlequin ichthyosis, according to a research report published in International Journal of Ayurveda and Pharma Research, published in July, 2023.
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