High Court · 2025

WP No. 16622 of 2025IN THE HIGH COURT OF JUDICATURE AT MADRASDATED: 11-07-2025CORAMTHE HONOURABLE MR JUSTICE N. ANAND VENKATESHWP No. 16622 of 2025M.Mohmed Abdul MageethPetitionerVs1. State of Tamil Nadu Rep by Secretary to Government Ministry of Health and Family Welfare Department St.George Fort, Chennai 600 0092.The Director Centre of Excellence Institute of Child Health, Egmore Chennai 600 0083.The Director National Health Mission No.359, Anna Salai, 5th Floor TNHSP Buiding, DMS Campus DMS Annexe, Teynampet Chennai 600 0064.The Secretary Ministry of Health and Family Welfare Department https://www.mhc.tn.gov.in/judis WP No. 16622 of 2025 Rare Disease Cell Government Of India, New Delhi. (R4 suo motu impleaded vide order dated 05.06.2025 in WP.16622/2025)RespondentsPetition filed under Article 226 of the Constitution of India, praying for issuance of a Writ of Mandamus to direct respondents to infuse the drug (Inj.Cerezyme) at Coimbatore, as per the G.O.(Ms).No.63, dated 11.03.2024 immediately.For PetitionerMr.A.S.Mujibur RahmanFor RespondentsMr.E.Sundaram Government Advocate for R1 to R3Mr.S.NelsonCentral Government Standing Counsel for R4ORDERPursuant to the order passed on 04.07.2025, the petitioner has filed an affidavit before this Court. The relevant portions are extracted hereunder:-“4. I submit that had taken this Enzyme for almost 28 times in Chennai ICH, Egmore till now we have not faced any complication or allergic. And usually, it was administered by nurses only in ICH, Egmore. So, in Coimbatore GH lot of all trained paediatricians are there to manage any type of complications if happen. If any drug complications happen https://www.mhc.tn.gov.in/judis WP No. 16622 of 2025that treatment protocol is same throughout world that also applicable to this Enzyme replacement therapy so it can be administered in Coimbatore. I also an ICU specialist at VGM, Liver transplant Centre, Coimbatore. I hereby undertake any risk infusion of Enzyme drug at Coimbatore and I will take all responsible for further consequences drug takes at Coimbatore.”2. In view of the above, it is clear that the petitioner is willing to administer the Enzyme drug to the child at Coimbatore and he is also willing to undertake any risk due to the infusion of the Enzyme drug at Coimbatore itself and he will take all the responsibility for any consequences. To support this undertaking, the petitioner is also relying upon the opinion given by a specialist doctor.3. The fourth respondent has filed a counter affidavit. The relevant portions are extracted hereunder:-“4. I further state that the matter has been examined in the Ministry of Health and Family Welfare (MoHFW) and it has been found that no such Standard Operating Procedure https://www.mhc.tn.gov.in/judis WP No. 16622 of 2025(SoP) has been issued by the MoHFW. As per the Guidelines dated 11.08.2022 (Annexure 2) issued under the National Policy for Rare Diseases (NPRD), treatment of upto Rs.50 lakhs per patient for rare diseases listed under the NPRD, 2021, is provided only through designated Centres of Excellence (CoEs). However, it was decided to explore whether any such practice is being followed in other CoEs. Accordingly, a letter dated 25.04.2025 was sent to all CoEs (List of 13 CoEs enclosed, (Annexure 3) seeking information on whether rare disease drugs are being administered to patients through any other institution or hospital located at a distant place, due to reasons such as difficulty in travel from the patient's place of residence to the CoE. Replies were received from 5 CoEs wherein only 2 CoEs (AIIMS, New Delhi and IGICH, Bengaluru) have such arrangement. The practices followed by AIIMS, New Delhi and IGICH, Bengaluru at hospital level, as informed, are as under:I. AIIMS, New Delhi: Many of the patients are from outside and need to travel long distances for 2 weekly infusions for Enzyme Replacement Therapy. Therefore, a local physician (preferably in a medical college or https://www.mhc.tn.gov.in/judis WP No. 16622 of 2025hospital/nursing home) is identified through the patient, and a telephonic conversation is done by the COE team with the local physician. The physician administering the medicine maintains a record in a pre-designed form with the infusion date and number of vials infused. The medicines are issued every 3-4 months based on patient stock. Patients are called for periodic evaluation, with all the infused vials and filled form by the physician. All the records are maintained at AIIMS COE about the vials issued and used and their progress.II. IGICH, Bengaluru: COERD, Bengaluru is at IGICH, IGICH being a pediatric hospital, caters only to children upto the age of 18 yrs. Hence IGICH does'nt have in-patient facility to treat adult patients beyond 18 years. Hence children with primary immunodeficiency who have crossed 18 yrs are being treated in the department of immunohematology Bangalore medical college and research institute. This arrangement was as per the directions of https://www.mhc.tn.gov.in/judis WP No. 16622 of 2025Hon'ble High Court of Karnataka and going on even before NPRD was implemented. Under this arrangement, drugs are procured at IGICH under NPRD and indent is placed from BMCRI every 3 month along with utilization certificate of previous supply. It is to be noted that BMCRI is located 2-3 km from IGICH.5. I humbly further state the Department of Health and Family Welfare, Government of Tamil Nadu, which issued G.O.(Ms) No.63 dated 11.03.2024 (Annexure-4) for the prevention and management of genetic disorders and for establishing three centres at Chennai, Coimbatore and Madurai, it is stated that, as per para 3 & para 4 of the said Government Order, these centres are intended to function as Molecular Diagnostic Testing Laboratories. Their overall scope includes: diagnostic testing for inherited genetic disorders; screening of pregnant women and newborns across all districts; genetic counselling for pregnant women carrying a fetus at high risk of genetic disorders, as well as for parents identified as carriers of genetic disorders; strengthening of infrastructure and resources; and periodic training of technical staff and faculty by trained centers. The Government Order does not mention that treatment https://www.mhc.tn.gov.in/judis WP No. 16622 of 2025will be provided at these centers. The Centers of Excellence for Rare Diseases under NPRD 2021 have no relation with the centers proposed in the Tamil Nadu Government's order dated 11.03.2024.”4. In the light of the above stand taken by the fourth respondent, no further orders are required to be passed in this writ petition, since the main issue involved in this writ petition has been resolved pursuant to the affidavit filed by the petitioner before this Court and which has been recorded supra.5. This writ petition is disposed of in the above terms. No costs.11-07-2025Index:Yes/NoSpeaking/Non-speaking orderInternet:YesNeutral Citation:Yes/Noss https://www.mhc.tn.gov.in/judis WP No. 16622 of 2025To1. The Secretary to Government Ministry of Health and Family Welfare Department St.George Fort, Chennai 600 0092. The Director Centre of Excellence Institute of Child Health, Egmore, Chennai 600 0083.The Director National Health Mission No.359, Anna Salai, 5th Floor, TNHSP Buiding, DMS Campus, DMS Annexe, Teynampet Chennai 600 0064. The Secretary Ministry of Health and Family Welfare Department Rare Disease Cell Government of India New Delhi https://www.mhc.tn.gov.in/judis WP No. 16622 of 2025N.ANAND VENKATESH J.ssW.P.No.16622 of 2025 11-07-2025