Disposed

Suo Motu v. State of Kerala

Kerala HC15 Nov 2022WP(C)/30529/2022

Case brief

AI extract

What is this about?

The High Court of Kerala, Suo Motu, directed the Secretary to the Government, Ministry of Health and Family Welfare to include Congenital Adrenal Hyperplasia in Group II of rare diseases and provide treatment support within two months, following the CTGCD opinion and existing state assistance.

What did the court decide?

The Secretary to the Government, Ministry of Health and Family Welfare is directed to issue appropriate orders for inclusion of Congenital Adrenal Hyperplasia in Group II of NPRD 2021 within two month

Suo Motu Vs State of Kerala — Pension and Retirement Benefits | Kerala HC (2022)

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IN THE HIGH COURT OF KERALA AT ERNAKULAM

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PRESENT

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THE HONOURABLE THE CHIEF JUSTICE MR.S.MANIKUMAR

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THE HONOURABLE MR. JUSTICE SHAJI P.CHALY

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TUESDAY, THE 15TH DAY OF NOVEMBER 2022 / 24TH KARTHIKA, 1944

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WP(C) NO. 30529 OF 2022

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PETITIONER:

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SUO MOTU

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BY ADV Suomotu

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RESPONDENTS:

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1 STATE OF KERALA REPRESENTED BY THE CHIEF SECRETARY, GOVERNMENT OF KERALA, GOVERNMENT SECRETARIAT, THIRUVANANTHAPURAM - 695 001.

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2THE PRINCIPAL SECRETARY TO GOVERNMENT
HEALTH AND FAMILY WELFARE DEPARTMENT,
ROOM:301 GOVERNMENT SECRETARIAT ANNEXE-1,
THIRUVANANTHAPURAM - 695 001.

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3THE SECRETARY TO THE GOVERNMENT
MINISTRY OF HEALTH AND FAMILY WELFARE,
GOVERNMENT OF INDIA, NEW DELHI.

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IS IMPLEADED AS ADDITIONAL R3 AS PER ORDER DATED
26/10/2022 IN WP(C).

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BY ADVS.
SRI.K.R.RANJITH, GP
SRI.JAISHANKAR V.NAIR, CGC
SHRI.N.MANOJ KUMAR, STATE ATTORNEY

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THIS WRIT PETITION (CIVIL) HAVING COME UP FOR ADMISSION ON
15.11.2022, THE COURT ON THE SAME DAY DELIVERED THE FOLLOWING:

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W.P.(C)No.30529 of 2022

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JUDGMENT

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Dated this the 15^th day of November, 2022

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S.Manikumar, C.J.

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On 27.09.2022, we passed the following order:

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“This suo motu public interest writ petition is filed with a prayer to include Congenital Adrenal Hyperplasia in the group of rare diseases and to grant financial aid and support to the patients.

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In this writ petition, the petitioner, who is the mother of three children, averred that her two young children, aged 7 and 2, are ailing from Congenital Adrenal Hyperplasia. The eldest of the two, Santrin Joseph is also 90% autistic. The child is unable to fulfill his physical needs and requires constant care and companionship. The child cannot attend school and even hurts himself and his brother.

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On this day, when the matter came up for hearing, Mr.N.Manoj Kumar, learned State Attorney, submitted that he will take notice on behalf of both the respondents [State of Kerala represented by the Chief Secretary and the Principal Secretary to Government, Health and Family Welfare Department] and get suitable instructions in the matter.

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Post the writ petition after a week.”

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Subsequently, on behalf of the State of Kerala

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represented by Chief Secretary and the Principal Secretary to

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W.P.(C)No.30529 of 2022

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the Government, Health and Family Welfare Department (respondents 1 and 2 respectively), the Under Secretary to the Government, Health and Family Welfare Department, Thiruvananthapuram has filed a counter afÏdavit dated 18.10.2022, setting out the steps taken by the State Government. Relevant portions of the same read thus:

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“2. As per the petition filed in W.P.(C) No.30529/2022 the petitioner is the mother of three children and her young two children aged 7 and 2, is ailing from Congenital Adrenal Hyperplasia (CAH). The eldest, of the two, Master Santrin Joseph is also 90% autistic. The child is unable to fulfill his physical needs and needs constant care and companionship. The child cannot attend school and even hurts himself and his brother. This is supported by Exhibit P7, the Disability certificate of Kum. Santrin Joseph, the report given by Dr.Shankar V.H, the Medical certificate for availing Financial Assistance issued by Dr. Rajeev Philip and the findings revealed by the genetic test results.

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It is submitted that, Sri. Manu Joseph father of Santino Joseph (1 year 9 months) and Santrin Joseph (7 year 2 months) with Congenital Adrenal Hyperplasia (CAH) and Autism, requested financial assistance with the Honorable Health Minister for the treatment of their children on 25.07.2021. The request was forwarded to State Mission Director, National Health Mission as per letter dated 20.12.2021.

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W.P.(C)No.30529 of 2022

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It is submitted that the Child Health Division, National Health Mission contacted the parents over phone on 28.12.2021 to know the current health status and the needs of the children. CAH is an inborn error of metabolism and is included under the metabolic screening panel by the State since 2013 and as part of the comprehensive newborn screening program under Rashtriya Bal Swasthya Karyakram. There are specific treatment guidelines available for children identified to have CAH and are being followed through public health institutions across the State. Those tested positive needs specific treatment including drugs, diet and lifestyle modifications with regular follow up for specific investigations.

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In this case as there are more than one child from the same family who were affected and the parents were having another child as well, it mandates a genetic testing and counseling for the best outcome. Hence the case was referred to Dr.Shankar V.H - Additional Professor & Geneticist, Department of Pediatrics, Sree Avittam Thirunal (SAT) hospital for a detailed medical evaluation and assessment of treatment needs. Dr.Shankar. V.H evaluated both the children and submitted a detailed medical report, which recommended few genetic tests and also advised to continue medications which can be availed free of cost either available under Essential Drug List (EDL) or if not available can be availed using the Arogyakiranam scheme from the nearby Government hospital. Both children are having cognitive decline and Autism spectrum disorder which requires another set of therapies. The Counselling and the therapy recommended can be met from District

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W.P.(C)No.30529 of 2022

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Early Intervention Centers (DEIC), Kottayam or Regional Early Intervention Center (REIC) in MCH Kottayam, and is already informed to the parents.

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It is submitted that, Smt.Smitha Antony, mother of these children again send a request to Honorable Health Minister to get financial assistance for the genetic tests recommended by Dr.Shankar with an estimated cost of Rs.35000 for both children. The request was forwarded to the State Mission Director NHM. As per the existing guideline these tests cannot be included under any of the existing schemes. Hence special administrative sanction was recommended by the State Nodal OfÏcer Child Health in view of the high cost and given to DPM, Thiruvananthapuram dated 30.06.2022, by the State Mission Director to utilize an amount of Rs 35,000/(Rupees Thirty Five Thousand Only) for the list of genetic tests recommended by Dr.Shankar V.H for the children. The State Mission Director, Thiruvananthapuram has issued a proceedings for special administrative sanction for doing genetic test via SAT, on 30.06.2022.

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It is submitted that the samples for the said test was collected by the Genetic Clinic in SAT hospital and send to MedGenome Lab on 23.07.2022, and the results of the tests which confirmed the diagnosis Congenital Adrenal Hyperplasia as they detected pathogenic variants causative of the disease in the samples collected from both the children. But the Repeat PCR done on Santrin Joseph revealed that the child is unlikely to be affected with Fraile X Syndrome, and Karyotyping test confirmed the normal male Karyotype. District Programme Manager,

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W.P.(C)No.30529 of 2022

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Thiruvananthapuram released the sanctioned amount of Rs.35,000/- to the MedGenome Lab based on the fund request received from Superintendent of SAT Hospital.

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It is submitted that on 01.09.2022, this Hon'ble Court after examining the petition submitted by Smt. Smitha Antony with the request to include Congenital Adrenal Hyperplasia in the group of rare disease and grant financial aid and support to parents, directed the registry to initiate a Public Interest Litigation in the matter. The Subject matter and content tells that the petition is to include Congenoital Adrenal Hyperplasia in the group of rare diseases and to grant financial aid and support to the parents. As per Exhibit P4 Letter from Ministry of Health and Family Welfare, Government of India dated 21.07.2022 mentioned that after due consideration the Central Technical Committee for Rare Diseases (CTCRD) opined that CAH can be categorized as Category 2 Rare Disease and treatment support can be offered through any local tertiary care hospital, which is well in line with the way the state has managed the case till now.

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The allegation raised in the complaint that there is only one Pediatric Endocrinology Clinic in the State which is in SAT Hospital, Thiruvananthapuram is a wrong information and the State has Pediatric Endocrinology clinics running under the Department of Pediatrics in Medical Colleges including in Medical College, Kottayam.

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As per National Policy on Rare Diseases (NPRD), even though Eight Center of Excellences were identified, no centers were allotted to Kerala (Exhibit P4) and this has been represented to Ministry of Health and Family Welfare

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W.P.(C)No.30529 of 2022

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Gol, applications were submitted for three centers, SAT Hospital, Thiruvananthapuram, IMCH Kozhikkode and MCH Kottayam. A compliance report also filed based on the assessment report submitted by the inspection carried out by the three member national assessors.

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As per Exhibit P5 News article in Malayala Manorama, the parents have already collecting money from public through various means. The testimonials from Dr. Alex Mani in the same article is known scientific fact and the treatment protocol followed in the tertiary care hospitals and the Pediatric Endocrinology Clinics in Medical Colleges are in accordance with the latest scientific facts and evidences. National Policy on Rare Diseases 2021 does not mention anything on the financial assistance to children with rare diseases, but only says about the treatment support and means of identifying cases under three categories namely Category I, II, and III.

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It is submitted that there are Autism centers in seven hospitals including five Medical Colleges, namely Sree Avittam Thirunal (SAT) hospital, Thiruvananthapuram, GMC Alappuzha, GMC Kottayam, GMC Thrissur and GMC Kozhikkode attached to Regional Early Intervention Centres (REIC) and in GMC Manjeri and Institute of Mental Health and Neuro Science (IMHANS), Kozhikkode where therapies and support required to children with Autism are provided. All the District Early Intervention Centres (DEIC) are also equipped to provide necessary therapies to children with Autism and there are one each DEICs in every district.”

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W.P.(C)No.30529 of 2022

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Documents produced along with the counter afÏdavit

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filed by respondents 1 and 2 are reproduced:

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Annexure R1(a)

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W.P.(C)No.30529 of 2022

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Annexure R1(b)

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W.P.(C)No.30529 of 2022

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W.P.(C)No.30529 of 2022

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Annexure R1(c)

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W.P.(C)No.30529 of 2022

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Annexure R1(d)

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Taking note of the above, on 26.10.2022, we passed

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the following order:

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“Under Secretary to the Government, Health and Family Welfare Department, Government Secretariat, Thiruvananthapuram has filed a counter afÏdavit on behalf of respondents 1 and 2 viz. State of Kerala, the

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W.P.(C)No.30529 of 2022

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Principal Secretary to the Government respectively, setting out the treatment given and expenses incurred, along with the supporting documents.

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Based on Ext.P3 letter written by Smt.Smitha Antony, Vayalil (H), Kozhuvanal, Kottayam, Kerala to this court, seeking to include Congenital Adrenal Hyperplasia, as a rare disease, to grant financial aid and support to the patients, this suo motu writ petition has been initiated.

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Inviting the attention of this court to Ext.P4 letter dated 21.7.2022 of the Ministry of Health and Family Welfare (Rare Diseases Cell), Government of India, addressed to Smt.Smitha Antony, Vayalil (H), Kozhuvanal, Kottayam, Kerala, Mr.K.R.Ranjith, learned Government Pleader submitted that the applicant had doubts regarding the bonafides and genuineness of the above said communication dated 21.7.2022.

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On receipt of instructions from the Rare Diseases Cell, Ministry of Health and Family Welfare, Government of India, Mr.Jaishankar V. Nair, learned Central Government Counsel submitted that, in response to the representation of Smt.Smitha Antony, reply dated 21.7.22 has been given to the effect that Central Technical Committee for Rare Diseases (CTCRD), Directorate General of Health Services, has examined the case and opined that Congenital Adrenal Hyperplasia (CAH) disease can be categorized as a Rare Disease under Group 2, for which, support can be provided by the State Government.

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For brevity, abovesaid letter dated 21.7.22 is

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W.P.(C)No.30529 of 2022

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reproduced:

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No.W-11037/65/2021-Grants (RD) (Part I) Government India Ministry of Health and Family Welfare (Rare Diseases Cell) Nirman Bhawan, New Delhi Dated:21/07/2022 To Smt.Smitha Antony, Vayalil (H), Kozhuvanal P O Kottayam, Kerala 686 573

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Subject: Representation regarding inclusionof Congenital Adrenal Hyperplasia (CAH) disease in the rare disease list of National Policy for Rare Diseases (NPRD), 2021 – reg.

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I am directed to refer to your representation dated 25.2.2022 on the subject mentioned above and to say that the matter was considered by Central Technical Committee for Rare Diseases (CTCRD), Directorate General of Health Services. The Committee examined the case and opined that Congenital Adrenal Hyperplasia (CAH) disease can be categorized as a Rare Disease under Group 2 for which support can be provided by the State Government and the treatment can be availed at any local tertiary hospital. Further action is being taken to include CAH into Group 2 of the Rare Disease under NPRD, 2021.

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It is also informed that as per NPRD, 2021, 08 (Eight) Centres of Excellence (CoEs) have been identified, which are premier Government tertiary hospitals with facilities for diagnosis, prevention and treatment of rare diseases. The contact details of these 08 CoEs are enclosed at Annexure – I. In order to receive financial assistance for treatment of rare disease, the patient of the nearby area may approach the nearest Centre of Excellence to get him/her assessed and registered on the digital portal.

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Yours faithfully,

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Encl: As above

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Though the Committee has opined that the

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W.P.(C)No.30529 of 2022

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abovesaid disease can be categorized as a rare disease, under Group 2, as per the National Policy for Rare Diseases, 2021, a notification has to be issued by the Central Government.

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In order to ascertain the further steps taken by the Ministry of Health and Family Welfare, as regards issuance of notification based on the opinion of the Central Technical Committee for Rare Diseases (CTCRD), we deem it fit that the Secretary to the Government, Ministry of Health and Family Welfare, Government of India, New Delhi should be impleaded as a party respondent in the writ petition, as he is a necessary and proper party for the prayer to be granted i.e., “to include Congenital Adrenal Hyperplasia in the group of rare diseases to grant financial aid and support to the patients”.

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Therefore, in exercise of powers conferred under Article 226 of the Constitution of India, the Secretary to the Government, Ministry of Health and Family Welfare, Government of India, New Delhi is arrayed as additional respondent No.3 in the writ petition. Registry is directed to make necessary changes wherever required.

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Post on 3.11.2022.”

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On instructions, a statement dated 14.11.2022 has

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been filed by the Deputy Solicitor General of India, on behalf of the Secretary to the Government, Ministry of Health and

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W.P.(C)No.30529 of 2022

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Family Welfare, New Delhi (respondent No.3). Relevant

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portion of which reads thus:

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“3.It is submitted that the Central Technical Committee for Rare Disease (CTCRD) has already considered the issue of inclusion of Congenital Adrenal Hyperplasia (CAH) disease as a Rare Disease and recommended that this disease can be categorized as a Rare Disease under Group 2 for which support can be provided by the State Government. The cost of the treatment for the CAH disease is not too expensive and therefore, could be provided at local tertiary hospital. Further action is being taken to include this disease in Group 2 of NPRD-2021.”

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Having regard to the steps, which are taken by the State Government to treat the children/patients affected with the Congenital Adrenal Hyperplasia and placing on record the statement dated 14.11.2022 filed on behalf of the Secretary to the Government, Ministry of Health and Family Welfare, New Delhi (respondent No.3) to the effect that the Central Technical Committee for Rare Disease has already considered the issue of inclusion of the above said disease be recognised as rare disease under Group II and further statement that action is being taken to include the said disease in Group II of

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W.P.(C)No.30529 of 2022

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NPRD-2021, we direct the Secretary to the Government, Ministry of Health and Family Welfare, New Delhi (respondent No.3) to issue appropriate orders for inclusion as stated supra, within two months from the date of receipt of a copy of this judgment.

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With the above directions, writ petition is disposed of. Pending interlocutory applications, if any, shall stand

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closed.

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Sd/-

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S.Manikumar Chief Justice

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Sd/-

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Shaji P.Chaly Judge

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vpv

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W.P.(C)No.30529 of 2022

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APPENDIX OF WP(C) 30529/2022

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PETITIONER’S EXHIBITS

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EXHIBIT P1ORDERS OF THE HON’BLE MR. JUSTICE K.
VINOD CHANDRAN DATED 01.09.2022.
EXHIBIT P2ORDERS OF THE HON’BLE CHIEF JUSTICE
DIRECTING THE REGISTRY TO INITIATE A PIL.
EXHIBIT P3PETITION RECEIVED FROM SMT.SMITHA ANTONY
AND ITS ENGLISH TRANSLATION.
EXHIBIT P4LETTER FROM MINISTRY OF HEALTH & FAMILY
WELFARE, GOVERNMENT OF INDIA DATED
21.07.2022.
EXHIBIT P5NEWS ARTICLE FROM MALAYALA MANORAMA DAILY
AND ITS ENGLISH TRANSLATION.
EXHIBIT P6LETTERS FROM DIRECTOR OF HEALTH SCIENCES,
GOVERNMENT OF KERALA DATED 07.02.2022 &
11.05.2022 AND ITS ENGLISH TRANSLATION.
EXHIBIT P7DISABILITY CERTIFICATE OF KUM. SANTRIN
JOSEPH AND OTHER 4 SUPPORTING DOCUMENTS
ATTACHED WITH THE PETITION.

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RESPONDENT EXHIBITS

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EXHIBIT R1(A)TRUE PHOTOCOPY OF THE LETTER NO. HEALTH-
FW2/262/2021-HEALTH DATED 20.12.2021
ALONG WITH ENGLISH TRANSLATION.
EXHIBIT R1(B)TRUE PHOTOCOPY OF THE MEDICAL REPORT
ALONG WITH LETTER
NO.NHM/6996/DEO(RBSK)/2021/SPMSU DATED
11.05.2022 OF THE STATE MISSION DIRECTOR,
THIRUVANANTHAPURAM.
EXHIBIT R1(C)TRUE PHOTOCOPY OF THE PROCEEDINGS
NO.NHM/6996/DEO(RBSK)/2021/SPMSU DATED
30.06.2022 OF THE STATE MISSION
DIRECTOR,THIRUVANANTHAPURAM.

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W.P.(C)No.30529 of 2022

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EXHIBIT R1(D)TRUE PHOTOCOPY OF THE LETTER
NO.NHM/6996/DEO(RBSK)/2021/SPMSU DATED
05.07.2022 FROM THE STATE MISSION
DIRECTOR TO THE PRINCIPAL SECRETARY,
HEALTH AND FAMILY WELFARE(FW) DEPARTMENT
ALONG WITH ENGLISH TRANSLATION.

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//TRUE COPY//

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P.A. TO JUDGE

Suo Motu v. State of Kerala

Case brief

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Suo Motu v. State of Kerala

Case brief

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