ORDER : Read order dated 21st January, 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 crowd funding. 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 dated 1st April, 2022 has been filed on behalf of the State Government as directed in the order dated 21st January, 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. 4. An additional statement has been filed on behalf of the State Government on 27th May, 2022, stating, among others, that the Medical Board constituted pursuant to the order dated 21st January, 2022 has, after the clinical examination, recommended the following: “a) All children should undergo rehabilitation for improving their quality of Life and facilities in medical Colleges and District Hospitals can be used for this. An approximate amount of about 1.5 to 3 lakh rupees for each child for a 5 year period may be earmarked for the rehab services including, PMR interventions, occupational therapy. An approximate amount of about 1.5 to 3 lakh rupees for each child for a 5 year period may be earmarked for the rehab services including, PMR interventions, occupational therapy. Physiotherapy, orthoses, walking aids and wheelchairs as needed for that particular child with SMA. (b) They will need emergency care for respiratory infection and may need respiratory support as and when required and existing facilities in Government Medical Colleges and District/General Hospitals can be utilised for this. (c) Orthopaedic management of any skeletal deformities including corrective surgeries as and when required shall be taken up through specialised units in Medical College Hospitals. (d) The new oral drug RISDIPLAM, which is available in India can be given for these children if made available through Government hospitals following the strategies on National Policy for Rare Diseases Management. All children under five years who are Type 1 and Type 2 may be included in the priority list for providing treatment. After one year the response can be evaluated and the medication support can be continued if sufficient financial source is available as per existing norms. All new SMA Type 1/Type 2 at younger age (less than 5 or 7 years) patient can be started on RISDIPLAM at the earliest. (e) All these children should be continued on Physiotherapy, Occupational Therapy, Development therapy and provided with Orthosis and Assistive devices and medical surveillance for intercurrent infections. Regular follow up and monitoring mechanisms to be established.” It is also stated in the said statement that the cost of the drug Risdiplam would work out to be Rs.2.073 lakhs per bottle. It is further stated that Physiotherapy units in 8 Medical Colleges and 14 District Early Intervention Centres will extend Physiotherapy to the patients. 5. An additional statement has been filed on behalf of the State Government on 3rd June, 2022, stating, among others, that a technical committee constituted for developing treatment protocol is of the opinion that it is better to start treatment for Type II patients aged less than five years; that there are only 27 Type II patients aged less than five years in the State; that four among the said 27 patients are already on medication through sponsorship and that the remaining 23 patients can be given the treatment. It is also stated that a module for physiotherapy treatment has been developed and steps are being taken to give training to all functionaries. Paragraphs 6 to 11 of the said statement read thus: “6. The technical committee consisted for developing treatment protocol is of the opinion that it was better to start treatment of Type II having less than 5 years. The total number of patient of Type II and under age of 5 years are 27. Out of that 4 are already on medicine through compassionate sponsorship. It was decided for remaining 23 patients immediately the appropriate calculation of dosage required to be done. The required dosage for 2 months to be calculated. 7. It was also informed that the company gives the dosage at 1 : 2 proportion. As the drugs is exorbitantly costly till the high level committee completes the negotiation for concessional rates, KMSCL shall go ahead with procurement of drug and do negotiation for getting more concessions than at present offered. 8. It was decided to take follow up action for procuring the medicine within 2 weeks time and directed the Child Health (in Charge), Directorate of Health Services to contact Managing Director KMSCL immediately for procuring medicine based on the volume of medicine required for the next two months. Parallelly negotiation will be done with the companies by the High level committee constituted by the Government . 9. Regarding physiotherapy treatment, it is submitted that module for physiotherapy treatment has been developed and 9th and 10th June has been fixed for providing physiotherapy treatment. 10. It was decided that Physiotherapy training to be given to all functionaries at PMR unit in MCH and Health Services. The training shall be completed before 15th June 2022. 11. Also a specific module may be prepared involving parents of the patient and training to parents to be given so as to build trust and also involve them in patient care on day to day basis. The training to parents shall be conducted in June and July and develop a network for parents for taking various activities. The standarisation of physiotherapy at centres and at home to be developed and submitted within 2 weeks. A protocol of physiotherapy at centres and at home to be developed and submitted within 2 weeks. The training to parents shall be conducted in June and July and develop a network for parents for taking various activities. The standarisation of physiotherapy at centres and at home to be developed and submitted within 2 weeks. A protocol of physiotherapy at centres and at home to be developed and submitted within 2 weeks. CDC and ICCONS to be involved to prepare the modules for patients and families of patients and used for providing needed physiotherapy as well.” 6. Heard the learned counsel appearing for the parties as also the learned Government Pleader. 7. In the course of hearing, it was brought to the notice of this Court that the Central Government has, in terms of O.M. dated 19.05.2022, amended paragraph 10(i) of the National Policy for Rare diseases(NPRD), 2021 and provided that financial support upto Rs.50 lakhs will be extended to patients suffering from any category of rare diseases. 8. The funds collected by the two support groups and provided to the State Government in terms of the order dated 21.01.2022 are not sufficient even for the treatment of the 23 children who are now identified for treatment. The Central and State Governments have, therefore, to come up with suggestions to tackle the issue. However, having regard to the affidavit and statements aforesaid and the submissions made by the learned counsel for the parties, I am of the view that the following directions can be issued for the time being: (i) Insofar as the funds transferred to the Government by the two support groups mentioned in the statement dated 1st April, 2022 are intended to be utilised exclusively for the treatment of SMA patients, the said amounts together with interest, if any, accrued shall be transferred to an account bearing maximum possible interest forthwith, after retaining the amounts required for the first phase for procuring the drug for the treatment of the 23 identified patients. (ii) The funds provided by the support groups shall not be utilised for any purpose other than for procuring the drug to be used for treatment of the identified patients. (iii) The Government shall forthwith commence the treatment of the 23 identified Type II SMA patients aged below five years in accordance the protocol evolved for the same. The Government is free to procure the drug Risdiplam making use of the fund referred to in direction (i) in a phased manner. (iii) The Government shall forthwith commence the treatment of the 23 identified Type II SMA patients aged below five years in accordance the protocol evolved for the same. The Government is free to procure the drug Risdiplam making use of the fund referred to in direction (i) in a phased manner. (iv) Before procuring the drug, a decision shall be taken at the appropriate level as to which portion of the amounts earmarked by the Government for treatment of patients suffering from rare diseases, viz, Rs.1,50,00,000/- could be earmarked for the treatment of SMA patients and also as to which portion of the amounts collected from the public could be earmarked for the treatment of such patients and only the deficit shall be withdrawn from the funds received from the support groups. (v) The sixteenth respondent is directed to file a statement within two months with the approval of the competent authority as to whether, in the absence of any Centre of Excellence in the State of Kerala, the financial support provided for in paragraph 10(i) of the National Policy for Rare Diseases could be extended to the 23 children for whom treatment is directed to be given in terms of the orders of this court by making use of the funds collected from the public, to ensure continued treatment for them. (vi) List this matter on 12th August, 2022, within which, the State Government shall file a compliance report as regards the directions aforesaid. The Government shall state in the report as to whether they intend to establish a digital platform for generating funds for the treatment of patients suffering from rare diseases including SMA.