Published: 19th December 2018
Govt pulls the plug on 100 crore grant for treating rare diseases like Thalassemia, Sickle-cell Anaemia, one year after announcing it
The complete shift of policy has left the families of kids with rare diseases and activists fighting for their cause in a shock
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 that 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 that was allocated for the scheme. A health condition is classified as a rare disease if it has a low prevalence — less than 1 in 2000. 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.
The complete shift of policy has left the families of kids with rare diseases and activists fighting for their cause in a shock. "After making much pomp and show about the policy last year, how can the government call its own policy illegal now?," asked Prasanna Shirol of the Organisation of Rare Diseases of India. "And the talk about states not agreeing for the scheme on 60: 40 cost-sharing basis is rubbish because any policy is first met with some resistance by states due to financial reasons but like Ayushman Bharat the Health Ministry could have pushed it if its intention were right."
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 Rs 15 lakh to over Rs 1 crore a year. "Our affidavit, dated March 14, 2018, stated that Rs 100 crore corpus has been created under NHM, no such corpus was created under the NHM. This occurred under an honest but mistaken belief that the funds under the NHM could be earmarked," the Apex Court was told in the affidavit signed by Health secretary Preeti Sudan.
The affidavit was filed in a case where guardians of a child who died of a rare disease took on the Centre for not providing any financial relief on time. The affidavit also said that a new sub-committee had been set up to "re-frame" the policy and till then needy patients from families belonging to only Below Poverty Line category will be aided financially through Rashtriya Arogya Nidhi — a Central fund to help poor patients. Sudan said that she won't comment on the matter as the case is "sub judice."