Patients and families affected by rare diseases have appealed to Prime Minister Narendra Modi to immediately release ₹100 crore allocated for their treatment and implement National Policy for Treatment of Rare Diseases, 2017 (NPTRD).
Patients under the Lysosomal Storage Disorders Support Society (LSDSS), a non-profit organisation working for the rights of patients with rare diseases, in their letter to Prime Minister’s Office, Ministry of Commerce and Industry, Ministry of Finance and Corporate Affairs, Ministry of Health and Family Welfare said: “For rare disease patients in India, the government’s promise to release ₹100 crore, under NPTRD, for treatment was the much-needed help required for fighting these life-threatening diseases.”
“However, the hope was shattered when in December 2018, the Ministry of Health and Family Welfare announced that the policy is being kept in abeyance. This abrupt and surprising decision of the government is a big setback for rare disease patients in India and has pushed their life towards uncertainty and death. Only Karnataka and Kerala governments have come forward to help rare disease patients,’ noted a release issued by the group.
Mr. Manjit Singh, president, Lysosomal Storage Disorders Support Society said: “We appeal to the Central Government for their urgent intervention in honouring its commitment towards rare disease patients in India. We request the government to immediately revoke the ban on NPTRD and, as outlined in the policy, immediately release the corpus fund with initial amount of ₹100 crore towards funding treatment of rare diseases. The NPTRD is a progressive policy and its speedy implementation would ensure that treatment of rare diseases in India gets the much-needed boost that is immediately required.”
LSDSS is headed by a group of parents of LSD patients.
The most common rare diseases recorded in India are Lysosomal Storage Disorders – Hunter Syndrome, Gaucher Disease and Fabry’s Disease. “The diagnosis of LSDs unlike any other rare disorder is the first and most critical and frustrating challenge for anyone with a rare disorder,’’ noted the group.