Appeal to PM for ₹100 crore allocated to treatment of rare diseases

Patients and families affected by rare diseases have appealed to Prime Minister Narendra Modi to release ₹100 crore allocated for the treatment of rare diseases, and immediately implement the National Policy for the 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 the Prime Minister’s Office (PMO), Ministry of Commerce and Industry (MoCI), Ministry of Finance and Corporate Affairs (MoFCA), and Ministry of Health and Family Welfare (MoHFW), said: “For rare disease patients in India, the government’s promise to release ₹100 crore under the NPTRD for the treatment of rare diseases was much-needed help 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 State governments have come forward to help rare disease patients,” noted a release issued by the group.

Mr. Manjit Singh, president, LSDSS, said: “We appeal to the Central Government for their urgent intervention in honouring the Government’s commitment towards rare disease patients in India. We request the Government to immediately revoke the ban on the NPTRD and, as outlined in the policy, to immediately release the corpus fund with the initial amount of ₹100 crore towards funding the treatment of rare diseases. NPTRD is a progressive policy and its speedy implementation would ensure that the 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.