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 perception that treatment could only prolong longevity of patients and not cure them permanently.
Passing orders on a public interest litigation petition 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.”
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.
National emergency
In his first order interim order passed on January 6, the Chief Justice hoped that the Centre as well as the State government shall consider provision of funds for treatment of rare diseases as nothing less than a “national emergency.” He also 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 that the State government was awaiting the notification. On his part, V. Ramesh, counsel for petitioner society, said other High Courts in the country too had taken serious note of the issue.
He said certain budgetary allocations made for expenditure on health in the neighbouring States had gone unutilised. After recording his submission, Chief Justice Sahi said: “It is quite possible that such a situation may be or may not be in the State of Tamil Nadu for which the learned Advocate General will call upon the government to inform the court about the same.”
His Bench also directed the Centre to allocate forthwith ₹ 4.40 crore for treatment of 11 LSD patients, who required around ₹ 40 lakh each per year for the treatment in Tamil Nadu and ordered the State government too to immediately release at least ₹ 5 crore to meet the expenses of those suffering from rare diseases in the State.
The High Court Registry was directed the list the case next on June 9 and hoped that by then, the national policy on treatment of rare diseases would have been put in place.
