BS RAWAT
NEW DELHI: The Indian Government has backtracked on implementing the Rare Disease Policy which is very unfortunate as we have already lost lives of more than 20 innocent children in last 24 months, says Lysosomal Storage Disorders Support Society (LSDSS) President Manjit Singh.

Mr Singh was speaking at a rare disease awareness programme organized by Maulana Azad Medical College, in New Delhi.

Mr Singh said, “Despite judicial intervention, Government is not coming forward to even initiate interim treatment process to the handful of 198 patients who have submitted their applications through proper channel to the central technical committee at rare disease cell at Union Health Ministry in the last 10 months.”

"We request the Government to reinstate the policy and seek opinions to amend it, along with reaffirming its commitment of Rs 100 crore corpus fund to start the interim process of treating eligible patients as a pilot," Mr Singh said.

Advocate Ashok Aggarwal said, “The court has asked the government to go through the global policies of leading nations and apply them in the Indian context. Meanwhile, we are hopeful to expect some positive news on the interim support for the patients.”

Dr. Seema Kapoor, Professor, Dept of Paediatrics, Maulana Azad Medical College, said, “Rare diseases are often chronic and severely hamper the quality of life of a patient. Enzyme Replacement Therapy have proven to significantly improve the patients’ condition.”

Experts point out that the national policy for treatment of rare diseases was finalized on May 25, 2017, and adopted in November 2017. It had allocated Rs. 100 crore corpus for treatment of rare diseases. The fund allocation was made in the ratio of 60:40 between the central and state governments.