NEW DELHI: A year after first announcing that a special fund of Rs 100 crore was being set up to help children suffering from rare diseases, the Centre has now taken a complete 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 “wrongly” clubbed under the National Health Mission — a health project for primary and secondary-level care.
The Centre, in its affidavit, also expressed its inability to spare Rs 100 crore for the scheme.Rare diseases refer to health conditions with a prevalence of less than one in 2,000. They include genetic diseases, rare cancers, infectious tropical diseases and degenerative diseases that are often chronic, debilitating, life threatening and often result in some form of handicap.
In India, an estimated 70 million patients suffer from conditions such as thalassemia, sickle-cell anaemia, Pompe disease and Gaucher’s disease, and most people are unable to afford the treatment as the cost runs from `15 lakh to over `1 crore a year.
This newspaper first reported how a 21-month-old suffering from a rare genetic disorder died last month as his dad’s desperate pleas to the govt for help under the scheme fell on deaf ears.
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“No such corpus was created under the NHM. This occurred under an honest mistaken belief,” says the affidavit signed by Health Secretary Preeti Sudan.