ARIF Vs. STATE OF KERALA

JUDGEMENT

(1.) Read order dtd. 21/1/2022.

(2.) Although an affidavit has been filed by the additional sixteenth respondent as directed in the above referred order, it is not stated in the said affidavit as to whether amounts sufficient for extending treatment to all those who are suffering from Group-3 rare deceases could be generated through the digital platform established for crowdfunding. Similarly, the affidavit does not indicate as to whether any alternative arrangement has been made for extending treatment to those who are suffering from Group-3 rare diseases. Even though it is stated in the affidavit in the said context that patients are free to approach the Centres of Excellence for treatment, there is no statement in the affidavit that they will be extended the treatment. In the context of the query made in the order as to whether a Centre of Excellence could be established in the State of Kerala, the statement in the affidavit is only that the proposals made are under consideration.

(3.) A statement dtd. 1/4/2022 has been filed on behalf of the State Government as directed in the order dtd. 21/1/2022, stating, among others, that the Government has received in its account bearing No.39229924684 at the City Branch of State Bank of India, Thiruvananthapuram, Rs.31,25,22,154.10 from the two support groups mentioned in the order. It is also stated in the said statement that the Government have also transferred to the said account a sum of Rs.1,50,00,000.00 intended for treatment of rare disease patients and the amount received pursuant to Ext.R1(h) advertisement. It is also stated in the said statement that steps have already been taken for identifying the patients who are suffering from SMA, and to conduct a clinical evaluation.