Twenty-four parliamentarians across party lines have approached Union health and family welfare minister Mansukh Mandaviya, underlining the need for sustainable funding support for certain diseases under the National Policy for Rare Diseases 2021.
In a memorandum signed on Rare Disease Day, they said: “Patients diagnosed with ultra-rare genetic conditions, including lysosomal storage disorders (LSDs), would require sustainable funding support. Classified as Group 3a conditions in the National Policy for Rare Diseases, 2021, we would like to draw your attention and seek measures in putting up a mechanism to ensure continuity for all these patients, subject to a review of the progress of these patients by competent members of the Central Technical Committee on Rare Diseases set up by MoHFW.”
MPs Fauzia Khan, Amiee Yajnik, Kumar Ketkar, Manoj Kumar Jha, Santanu Sen, and N S Kanimozhi are among those who signed the memorandum.
Fauzia, the convenor of this support group, said: “In the past few months, we have been approached by several patients from different regions, citing delays in treatment despite the availability of funding support by MoHFW. This unending delay on the part of the Centres of Excellence (CoEs) has caused serious concern and anxiety to the patients and their families.”
She added, “Most of these patients are diagnosed with life-threatening rare genetic conditions, including lysosomal storage disorders like Gaucher disease, Pompe disease, and Fabry disease.”