Chief Justice Amreshwar Pratap Sahi, said: “We may put on record that such a perception need not deter the government from proceeding further as we are of the firm opinion that it is difficult to exactly predict the expiry of anything in this world. “In the hope that a person cannot be treated, one should not forget that hope itself, at times, brings about miracles and therefore, it is the duty of every responsible citizen, more so that of a welfare State, not to lose faith or hope and continue to provide whatever assistance is possible within the means available. The perception, therefore, need not detain the government.”




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TAMIL NADUCourt shocked over lack of funds for treating rare diseases

Mohamed Imranullah S.CHENNAI 19 MARCH 2020 01:35 ISTUPDATED: 19 MARCH 2020 01:35 IST


 
 
 
 
‘Can’t let people die just because there’s no hope of recovery’
The Madras High Court has expressed dismay over the delay on the part of the Centre in finalising the National Policy on Treatment of Rare Diseases and the reluctance of the State government to allocate funds for treatment of rare diseases, on the basis of the perception that treatment could only prolong longevity of the patients and not cure them permanently.
Passing orders on a PIL plea by Lysosomal Storage Disorders (LSD) Support Society, a Bench, led by Chief Justice Amreshwar Pratap Sahi, said: “We may put on record that such a perception need not deter the government from proceeding further as we are of the firm opinion that it is difficult to exactly predict the expiry of anything in this world.
“In the hope that a person cannot be treated, one should not forget that hope itself, at times, brings about miracles and therefore, it is the duty of every responsible citizen, more so that of a welfare State, not to lose faith or hope and continue to provide whatever assistance is possible within the means available. The perception, therefore, need not detain the government.”
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The Bench, also comprising Justice Senthilkumar Ramamoorthy, pointed out that the PIL petition filed by LSD (a group of 50 genetically inherited and potentially fatal disorders) Support Society, seeking funds for treatment, had been pending in the High Court for the last three years, and before Chief Justice Sahi himself for the last three months. In his interim order of January 6, the CJ had expressed the hope that the Centre and the State government shall consider provision of funds for treatment of rare diseases as nothing less than a “national emergency”. He granted time till February 10 for the governments to come up with a concrete decision on allocation. However, nothing fruitful transpired, and hence, the governments were given further time till March 2. Still, it was reported that the national policy was yet to be notified and the State government was awaiting the notification.

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