New Delhi: Taking a dim view of the “somersault” by the Centre on the policy to treat rare diseases, Delhi high court has summoned the Union health secretary for an explanation.
“Secretary, department of health and family welfare, is directed to be present in court on the next hearing. On the said date, the secretary is directed to suggest an interim arrangement that can be made for patients suffering from rare genetic diseases,” Justice Manmohan noted in a recent order, following which the health ministry admitted to not have allocated any funds for the treatment of such patients.
HC was unhappy to note that despite giving an undertaking, the ministry had back tracked on earmarking Rs 100 crore funds instead of revising the policy itself, which had earlier been approved.
Questioning the “flip flop”, Justice Manmohan noted that “since May 2017, HC had been given an impression that the National Policy for Treatment of Rare Diseases had been approved by the appropriate authorities and was being implemented.”
The court had noted “the somersault” by the ministry officials and said that it “does not reflect well on the decision making process in the ministry” as it can prove to be costly. It also underlined that “one of the patients, whose case was directed to be processed by this court, has unfortunately expired during the pendency of the proceedings.”
In an affidavit filed last month, the government argued it was revising the policy as had been erroneously framed though public health is a state subject and concurrence of most of the states had not been obtained prior to the framing of the policy.
The ministry maintained that though the work of rare diseases was transferred from the Public Health Division to the National Health Division, it was difficult for the National Health Mission to support the treatment for rare diseases as the same falls under the tertiary sector and the mandate of NHM is only for primary and secondary care. In the same affidavit the government also conceded that no funds, leave alone Rs 100 crore, had been allocated for the policy.
https://timesofindia.indiatimes.com/city/delhi/explain-u-turn-on-rare-disease-policy-hc/articleshow/67355764.cms
