New Delhi: Recent headlines in the Hindustan Times highlighted a letter written by the leader of the Bharatiya Janata Party, Varnum Gandhi, to Health Minister Mansukh Mandaviya urging him to intervene on behalf of children with lysosomal storage disorders such as Gaucher, Pompe, and Fabry diseases.
The letter urges immediate action to save these children. Ten children have died waiting for treatment that was promised by the central government through its National Policy for Rare Diseases.
Under the National Policy, ₹50 lakh of financial assistance was promised to each rare disease patient. According to Varun Ghandi, not one patient received financial assistance and ten children died while waiting. Therefore, he urgently requests that the minister act immediately and clear the payments.
The BJP leader stated that children, six years of age or younger, are among the 432 patients he knows of that live with a rare disease, and these children’s lives are in danger.
BJP leader Gandhi also stated that the delay should not have occurred because India’s Drug Controller General approved treatment years ago for the majority of these diseases.
Yet reminders sent out by the Ministry were ignored by at least ten “Centres of Excellence” that failed to send in a single treatment request. And yet, these centres are supposed to be committed to benefiting the rare disease community.
The Organization for Rare Diseases India represents all rare disease patients in India. ORDI’s objectives include the development and implementation of public policies covering patients with rare diseases.