NEW DELHI: A year after first announcing that a special fund of Rs100 crore was being set up to help children suffering from rare diseases, the Centre has now taken a U-turn and is calling its own policy “un-implementable”.In an affidavit filed in the Supreme Court last week, the Union Ministry of Health and Family Welfare said the National Policy for Treatment of Rare Diseases was framed and notified without “proper consultations” and was “wrongly” clubbed under the National Health Mission (NHM) — a health project for primary- and secondary-level care.
The Centre, in its affidavit, also expressed inability to spare Rs100 crore for the scheme.
Diseases that have low prevalence — less than 1 in a population of 1,000, according to WHO definition — are classified as rare. They include genetic and degenerative diseases that are often chronic, debilitating, life-threatening and often result in some form of handicap.
“Our affidavit dated March 14, 2018 stated that Rs100 crore corpus has been created under NHM, but no such corpus was created under the NHM. This occurred under an honest mistaken belief that the funds under the NHM could be earmarked,” said the affidavit — signed by health secretary Preeti Sudan — submitted to the apex court.
The affidavit said a new sub-committee had been set up to “re-frame” the policy and till then, needy patients only from ‘Below Poverty Line’ families will be aided financially through Rashtriya Arogya Nidhi, a Central fund to help poor patients. The affidavit was filed in a case where parents of a child who died of a rare disease took on the Centre for not providing any financial relief. When contacted, Sudan refused to comment saying the matter was “sub judice”.