Rare diseases: NGO seeks PM's help
New Delhi: An NGO, representing patients and families affected from the rare diseases, has appealed to PM Narendra Modi to immediately release Rs 100 crore allocated for their treatment and implement the 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 Rs 100 crore, under NPTRD, for treatment was the much-needed help required for fighting these life-threatening diseases."
The NGO's appeal letter was submitted to PMO, ministries of commerce and industry, finance and corporate affairs and health and family welfare on Wednesday. The society has a group of patients with rare diseases such as Hunter Syndrome, Gaucher Disease and Fabry's Disease. The Centre had promised a national policy that would help 70 million people with rare diseases across the country. But the Union health ministry in a gazette notification issued on December 19, 2018, said: "The Centre has decided to review the policy in light of information and updates received for further improvement. It has been kept in abeyance till a revised policy is issued."
"The Government has backtracked on Rare Disease Policy which is very unfortunate as we have already lost lives of more than 20 innocent children in last 24 months. The escape route of another nine months to reframe the policy by the government will increase the toll. Despite judicial intervention, Government is not coming forward to even initiate interim treatment process to handful of 198 patients who have submitted their applications through proper channel to the central technical committee at rare disease cell at ministry of health & family welfare since last 10 months," Manjit Singh, LSDSS President, urged.
"We request the Government to reinstate the policy and seek opinions to amend it. Along with reaffirms its commitment of Rs 100 crore corpus fund to start the interim process of treating eligible patients as a pilot," Manjit Singh said.