Kerala HC Directs Centre to consider inclusion of 3 medical colleges as centres of excellence to treat rare diseases

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

A Bench of Chief Justice S Manikumar and Justice Shaji P Chaly said if the Centre takes a favourable decision on the request, children and others suffering from rare diseases could be treated within the State of Kerala and there could be sufficient contribution from the Central government as well.

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The three institutions mentioned in the request are the Government Medical College Hospitals in Thiruvananthapuram, Kottayam and Kozhikode.

While issuing the direction, the High Court observed that the State government has not created awareness on the special account created for treatment of children suffering from rare diseases so that more contributions from the general public can come in.

It observed that it was a sorry state of affairs that none of the corporate companies have come forward to contribute Another issue which the court asked the Central government to address was with regard to providing financial support to those suffering from rare diseases which require more than one-time treatment and consequential expenses.

Under the National Policy for Rare Diseases, financial support of up to Rs 20 lakh under the Rashtriya Arogaya Nidhi is presently provided by the Centre for one-time treatment of rare diseases.

However, there are various rare diseases — mentioned in the policy — which require continuous treatment, the court noted in its order on two pleas, filed in 2017, relating to providing free of cost enzyme replacement therapy to several children suffering from such diseases.

"… 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 Bench said.

On the issue of creating awareness among the public to contribute for treatment of the rare diseases, the court said no steps have been taken in this regard by the State government despite the issue being pending for nearly five years.

The Bench said that just like the State government permitted Kerala Social Security Mission to issue a work order to an agency, — Global Innovative Technologies — 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 also.

"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 Benh further said and 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." Noting that there was not much contribution from the public and that the State government was duty-bound to provide adequate treatment, 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," the Bench said.

Meanwhile, the State government told the court that till February 1 this year, an amount of Rs 1,14,81,381 has been collected in the special account. 

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