Noting that it is difficult to exactly predict the expiry of anything from this world, the Madras High Court has said merely because a disease cannot be treated or cured a welfare state should not be deterred from continuing to provide financial assistance to those in need.
A bench of Chief Justice AP Sahi and Justice Senthil Kumar Ramamoorthy made the observation while directing the Tamil Nadu and Central governments to allocate Rs 9.40 crore totally as an interim measure toward the treatment of patients affected by rare and potentially fatal Lysosomal Storage Disorders (LSDs).
The court passed the interim direction last week on a public interest litigation petition from LSD Support Society of India seeking a direction to the state Health Department to ensure cost free, uninterrupted and definitive treatment to the patients suffering from LSDs.
According to the petitioner, LSDs are a group of 40 plus rate, genetic disorders which affect one in about 8,000 live births. A patient with LSD not only develops physical deformation in cell structures, but eventually suffers multi- organ malfunctions and causing deaths.
The state government had informed the court that the disease was not curable and the financial aid would only help prolong the longevity of a patient.
The bench in its order 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 from this world. In the hope that a person cannot be treated, one should not forget that hope itself, at times, brings about miracles, it said.
Therefore, it was 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 possible within the means available, the court added.
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The bench also said the governments plea of non- availability of funds did not impress it, adding during the pendency of the litigation and in the preceding six months, at least, four of such patients have lost their lives.
In such circumstances, it would be appropriate that the state and the central governments should gear up their financial resources in order to meet this challenge, if not fully, at least in part, it said directing the state to allocate Rs five crore to meet expenses of patients who may be urgently requiring it.
The court also directed the Union Health Ministry to provide a one-time aid of Rs 40 lakh each in respect of at least 11 patients as an interim measure and posted the matter for further hearing to June 9.