The Kerala High Court has issued a set of directions to the state and central governments in an effort to make adequate funds available for treating patients with rare diseases, particularly for those who cannot afford such expenses, in order to enforce the citizen's rights guaranteed by Article 21 of the Constitution.
The Court stated that it was critical to distribute specific guidelines on the subject because, while effective therapies for most uncommon diseases were available, only a small number of people could pay them. As a result, the majority of patients, particularly children of delicate age, were doomed to die due to a lack of cash to cover treatment costs.
The Judge further stated that the absence of facilities in the state for the same was a contributing factor to the issue.
It should be highlighted that Spinal Muscular Atrophy (SMA) is a severe and rare genetically inherited neuromuscular illness that affects approximately 100 children in the state.
Although life-saving medications such as Zolgensma are available for treatment, they are excessively expensive, and no facilities have been offered by the Centre or the State, particularly for individuals who cannot afford the treatment costs.
The Court stated that the enforceability of people’s rights is inextricably connected to the integrity of a democratic judicial system. The judicial system, it was claimed, faces a severe challenge in enforcing socio-economic rights.
The Centre designated the hospitals mentioned in the Policy as Centres of Excellence (COE) with facilities for treating rare diseases and made financial support available up to Rs.20 lakhs for treating rare diseases in Group-1. It built a digital platform for voluntary crowd-funding to gather cash required for the treatment of diseases, particularly those in Group-3, due to resource restrictions and pressing health needs.
Why were the directions issued?
Despite the Centre's efforts, the economically disadvantaged sections of Kerala were left out because no Centres of Excellence were constructed in the state, and the nearest COE was in Bangalore.
Furthermore, the state lacked a policy for the treatment of rare disorders. It was still working on a concept note for obtaining funds through crowdfunding for this reason. Similarly, the Kerala Social Security Mission and the Social Justice Department are still working on the rules for identifying beneficiaries and enlisting the help of social media organizations to increase donations for the treatment of rare diseases. The Kerala Social Security Mission has built a 'We Care' payment channel and rolled out an online platform for mobilizing contributions, which may be used to assist and manage uncommon diseases. All of these projects, however, were still in their infancy.
The Court observed that if representatives of the people could gather crores of rupees in a matter of days for the treatment of two children with SMA, it may be inferred that the State's lax attitude was the source of its incapacity to make such arrangements. Moreover, crores of rupees are allegedly being collected purportedly for treatment, even though private business organizations’ digital platforms. After a month, the Court will hear the case, during which time the said instructions must be followed.