Kochi : The life of citizens is a matter of paramount importance in a welfare State else the concept would become meaningless, the Kerala High Court said on Friday.
Justice P B Suresh Kumar, issuing directions to Central and State governments to file affidavits on treatment policies for rare diseases such as spinal muscular atrophy (SMA), said governments cannot shirk their responsibility by saying they have no resources.
The court's observation came during the hearing of a plea filed by Arif, the father of an infant Imran, who had approached the court saying he cannot ensure his son's treatment for SMA without the support of the State government.
The six-month-old battling SMA died of it in northern Kozhikode district in July last.
The life of citizens is a matter of paramount importance in a welfare State, for, if the State cannot secure the life of its citizens, the very concept of welfare State would become meaningless. The government in a welfare State is obliged to provide adequate medical facilities for securing the life of its citizens," the court said.
The High Court, in its order, said no government can say that it will not treat patients with rare diseases due to financial constraints.
"In other words, the initiative to tackle situations of this nature has to come from the government and it cannot shirk its responsibility by contending that it has no resources," the court said.
The State government had, in a statement, said neither the Health Department nor the Kerala Social Security Mission (KSSM) was in a position to extend financial support for bearing the huge cost of the treatment/medicine required for Arif's son.
However, a committee led by local CPI(M) MLA had raised some crores of rupees through crowdfunding to buy Zolgensma Onasemnogene injection, one of the most expensive in the world, for treatment. One dose of the injection costs Rs 18 crore.
The court noted that while some foreign countries have evolved policies to provide affordable treatment of rare diseases and implemented the same several years back, the government of India had not even formulated a concrete policy until recently to address the grievances of such patients.
The court said although the Union government had established a few centres of excellence (COE) in 2021 for treatment of rare diseases, people from poor background are not benefitted.
The court directed the government to state any impediments, if any, in establishing COEs in all the States, and if there are none, then steps should be taken for the purpose.
"The State government shall forthwith identify the children who are suffering from SMA in the State for whose ailments effective drugs are available, and use the funds received exclusively for procuring drugs for the treatment of such children by prioritising interventions that benefit more number of children with the lesser amount available," the court said.
It directed the State government to make necessary arrangements for the treatment of such children.
It asked the State and the Union governments to indicate the present stage of development of the Concept Note for raising crowdfunding for treatment of rare diseases as also the steps taken for identification of beneficiaries, and for engaging services of social media groups for encouraging donations for treatment of such rare diseases. PTI