Kerala HC Asks Centre To Expeditiously Consider State's Plea To Include 3 Medical Colleges As Centres Of Excellence For Treatment Of Rare Diseases

The Kerala High Court recently directed the Centre to expeditiously take an appropriate decision on the State government's request to include three State-run medical colleges as centres of excellence for treatment of rare diseases.

A Division Bench of Chief Justice S Manikumar and Justice Shaji P Chaly also pursuaded the Centre to take a favourable stand on the State's request as it would go a long way in benefitting the children suffering from rare diseases.

"If the Principal Secretary to Government, Health and Family Welfare Department, Government of India, New Delhi, respondent No. 4 in the writ appeal, takes a favourable decision, on the request made by the State Government in respect of the hospitals stated supra, children and others suffering from rare diseases could be treated within the State of Kerala and there could be sufficient contribution from the Government of India as well."

The decision came in two pleas filed in 2017 seeking to provide free of cost enzyme replacement therapy to several children suffering from rare diseases.

The State had recommended the Government Medical College Hospitals in Thiruvananthapuram, Kottayam and Kozhikode to be set up as Centres Of Excellence. National Policy, 2021 permits voluntary crowd funding for treatment. But the said funding can be made only to the Centres of Excellence.

There are 8 Centres of Excellence for treating the patients suffering from rare diseases. However, the nearest centre from Kerala is located in Bangalore which is why the State government put in the request for 3 centres within its territory. 

Nevertheless, the Court noted that the State had not promulgated sufficient awareness on the special account created for treatment of children suffering from rare diseases for more contributions to pour in from the general public despite the issue being pending for nearly five years.

It found that just like the State had permitted Kerala Social Security Mission to issue a work order to an agency for generating awareness on mobilisation of funds for the 'We Care Project' through social media, it ought to have done the same for rare diseases as well.

"We are also constrained to bring it to the notice of the government that there is no sufficient advertisement or awareness created among the general public enabling it to contribute, with all its might, to the special account created in the name of the Principal Secretary, Health and Family Welfare Department, government of Kerala, exclusively, for the treatment of children suffering from rare diseases. Had there been sufficient advertisement/awareness, certainly, there would have been contribution from the general public."

The Bench also expressed its displeasure at the lack of contribution from the corporate companies for the cause.

"...we also deem it fit to observe that it is a sorry state of affairs that none of the corporate companies have come forward to contribute. It is well known that the corporate sector has corporate social responsibility."

Further, the Centre was asked to address the issue of providing financial support to those suffering from rare diseases which require more than one-time treatment and consequential expenses. As per the National Policy for Rare Diseases, The Centre provides financial support of up to Rs 20 lakh under the Rashtriya Arogaya Nidhi for one-time treatment of rare diseases. However, there are various rare diseases that require continuous treatment. 

"… we are of the considered view that when there are so many rare diseases categorised in each group, the Central government ought to have considered the case of financial support to those who are suffering from rare diseases that may require more than one-time treatment and the consequential expenses also. We hope that the government will address the issue as well." 

The order added that under Article 21 of the Constitution of India a duty is cast upon the State government to provide treatment to the needy persons.

As such, the Bench directed the Department of Health and Family Welfare to advertise in the leading English and Malayalam newspapers about the special account for treatment of children suffering from rare diseases.

"Respondents (Centre, State government and other authorities) shall file a statement of facts responding to the observations, directions and the decision to be taken by the Central government. Action to implement the directions regarding advertisements through print, electronic and social media be reported to this court within two weeks." 

Case Title: State of Kerala & Anr v. Manoj M. & Ors

Click Here To Read/Download The Order