Dr Hisham Ahamed MD DM Associate Professor in Cardiology Project Lead, Hypertrophic Cardiomyopathy Center Amrita Ins=tute of Medical Sciences and

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1 Dr Hisham Ahamed MD DM Associate Professor in Cardiology Project Lead, Hypertrophic Cardiomyopathy Center Amrita Ins=tute of Medical Sciences and Research Kochi, Kerala India

2 HCM in the developing world Dr Hisham Ahamed MD DM Associate Professor in Cardiology Project Lead, Hypertrophic Cardiomyopathy Center Co Director, Cardio-Oncology Clinic Amrita Ins=tute of Medical Sciences and Research Kerala,India

3 What is the poten=al magnitude of HCM burden in India?

4 HCM Prevalence 1:200 ~ 5 million!!

5 KERALA STATE Popula=on ( Census 2017 ) : 33 Million HCM Prevalence 1: ,000!!

6 AMRITA INSTITUTE OF MEDICAL SCIENCES AND RESEARCH KOCHI

7 Why HCM?

8 Why seek to establish an HCM Center? A steady stream of HCM pa=ents ( Adult Cardiology / Pediatric Cardiology) Fragmented Care Non-Uniform Care PUBLIC AWARENESS Pa=ents and families looking for HCM focused centers : Where are they? WARPED LOW Misconcep=ons even within the cardiovascular community Resources were ge^ng engulfed by compe=ng areas

9 Kerala is ideally posi=oned

10 Kerala is ideally posi=oned Source : World Bank Group Kerala Health and Educa8on

11 MANY MEETINGS

12 OPD IMAGING CVTS Heart Failure EP Interven=on Transplant?? Gene=cs Elements were in place but not there yet.

13 KEEN ADMINISTRATION OPD EMR IMAGING EP INTERVENTION HCM CENTER CVTS HEART FAILURE TRANSPLANT GENETICS LOGISTICS ECONOMICS CONSENSUS

14 A MODEL TO EMULATE?

15 HCM CENTER (Amrita ) Dr Barry.J.Maron Dr David Maron

16 OBSTACLES TO DELIVERING CARE TO HCM PATIENTS IN INDIA

17 OBSTACLES TO DELIVERING CARE TO HCM PATIENTS IN INDIA Na=onal medical insurance crisis (~ 5% of the popula=on have reasonably comprehensive governmental or employer-sponsored coverage ) India, along with Bangladesh and Vietnam, has some of the highest burdens of out-of-pocket payments for health care in Asia (Van Doorslaer et al., 2007) Rao SK. Health Insurance in India. Financing and Delivery of Health Care Services in India. India: Ministry of Health and Family Welfare, Government of India, 2005:pp275e277 Sahrawat, Renu and Rao, D Krishna Insured yet vulnerable: Out-of pocket payments and India s poor, Health Policy and Planning,:1-9.

18 HEALTH INSURANCE SYSTEMS IN INDIA: WHAT THE FUTURE MAY HOLD Forrester report on Healthcare trends in Emerging markets; Cognizant analysis

19 What are the costs we are looking at? Test / Treatment modality Cost ( US Dollars ) 12 lead electrocardiogram $ 2 Echocardiogram $ 15 Cardiovascular MRI $ 160 Stress Echocardiogram $ 50 Cardiac consulta=on $ 5 Implantable Defibrillator $ 10, Hr Holter electrocardiogram $ 20 Heart transplant $ 15,000 Myectomy $ 2000 Gene=c tes=ng $ 350 Beta Blocker $ 5 / month These costs would nevertheless leave thousands of Indian pa=ents without any of the essen=al diagnos=c and treatment op=ons. Barry.J.Maron (2015) Importance and Feasibility of Crea8ng Hypertrophic Cardiomyopathy Centers in Developing Countries: The Experience in India ; Am J Cardiol 2015;116:332e334

20 Test / Treatment modality Cost ( US Dollars ) 12 lead electrocardiogram $ 2 Echocardiogram $ 15 Cardiovascular MRI $ 160 Stress Echocardiogram $ 50 Cardiac consulta=on $ 5 Implantable Defibrillator $ 10, Hr Holter electrocardiogram $ 20 Heart transplant $ 15,000 Myectomy $ 2000 Gene=c tes=ng $ 350 Beta Blocker $ 5 / month

21 OBSTACLES TO DELIVERING CARE TO HCM PATIENTS IN INDIA 70% of the popula=on is rural and only a minority of the country has access to allopathic (Western) medicine and modern medical treatments. Some physicians are trained in homeopathy and ayurveda alternate medicine, but akempt to prac=ce allopathic medicine with limited knowledge. Coronary artery disease, hypertension have consumed an overwhelming percentage of available resources Dissension within the cardiovascular community

22 BUILDING A TEAM Barry.J.Maron (2015) Importance and Feasibility of Crea8ng Hypertrophic Cardiomyopathy Centers in Developing Countries: The Experience in India ; Am J Cardiol 2015;116:332e334

23 The Amrita Hypertrophic Cardiomyopathy Team Barry.J.Maron (2015) Importance and Feasibility of Crea8ng Hypertrophic Cardiomyopathy Centers in Developing Countries: The Experience in India ; Am J Cardiol 2015;116:332e334

24 A myectomy surgeon was of paramount importance!

25 Amrita CVTS Team

26 OPD EMR IMAGING EP INTERVENTION HCM CENTER CVTS ( MYECTOMY ) HEART FAILURE TRANSPLANT GENETICS

27 OPD EMR IMAGING EP INTERVENTION CVTS ( MYECTOMY ) HEART FAILURE TRANSPLANT HCM CENTER GENETICS

28 DATABASE

29 THE JOURNEY SO FAR

30 Number of pa=ents enrolled Procedures Short term outcomes Genomics and Re-classifica=on Public and Physician awareness programs and updates Interes=ng referral routes Facing old foes

31 OUR PATIENTS BASELINE CHARACTERISTICS TOTAL PATIENTS (N=488) AGE ( yrs ) MALE SEX N=376 (77.0%) MLVWT ( mm ) OBSTRUCTIVE N=119 (24.4%) PEAK LVOT GRADIENT ( mmhg ) NON OBSTRUCTIVE N=369 (75.5%) PRESERVED LV EJECTION FRACTION N=463 (94.9%) REDUCED LV EJECTION FRACTION N=25 (5.1%) Mode of Death Number SCD 3 Stroke 3 Heart failure 4 CAD 2 Non Cardiac 3 15

32 PTSMA What once was PARAMETERS TOTAL (N=18) AGE MALE SEX N=11 (61.1%) PRE OP MYECTOMY NYHA CLASS III (N=9, 50%), II (N=9, 50%) POST OP MYECTOMY NYHA CLASS III (N=2, 11%), I/II (N=16, 89%) PRE LVOT PEAK GRADIENT (mmhg) POST LVOT PEAK GRADIENT (mmhg) PERMANENT PACEMAKER N=2 (11.1%)

33 SEPTAL MYECTOMY (N=16) PARAMETERS TOTAL (N=16) AGE MALE SEX 12 (75%) PRE OP MYECTOMY NYHA CLASS III/IV (100%) POST OP MYECTOMY NYHA CLASS 1/II (100%) PRE OP LVOT PEAK GRADIENT POST OP LVOT PEAK GRADIENT PERMANENT PACEMAKER 2 (16.7%)

34 ICD (N=16) PARAMETERS TOTAL (N=16) AGE ( yrs ) MALE SEX 16 (100%) OBSTRUCTIVE 10 (62.5%) PRIMARY PREVENTION 7 (43.7%) MLVWT ( mm ) Syncope 5 (31.25%) Non sustained VT 5 (31.25%)

35 GENOMICS - THROWS LIGHT Phenocopies ( PRKAG2 Cardiomyopathy ) Cardiac Amyloidosis Fabry s

36 PRKAG2 CARDIOMYOPATHY HCM MIMIC Aneesh Abhilash Ajeesh Jyothi Sathi Sudhi Aijin Ambily Anupama Jain Bhupesh Vinod Vipin Vinesh Sajan Manoj Rekha Ayush Adwaith Anamika Praveen Pranav Praveena Adithya Gokul Nilu Sulu Nakshtra Adhikrishna Vimal Kumar Ashwathi Ashwin Aradhya Sanjana Affected and PRKAG2 p.arg302gln Mut posi=ve RED FLAGS!!

37 HCM FAMILY with strong SCD History

38 MYH7 ( N= 6 ) MYBPC3 ( N= 10 ) Total ( N= 52 ) GENOMICS

39 PUBLIC AWARENESS AND PHYSICIAN UPDATES An HCM Traveling Show - Myectomy Surgeon and Cardiologist Radio / Television ( Health segments ) / Op-Eds

40 INTERESTING REFERRAL ROUTES

41 Facing Old Foes Old foes within the cardiovascular community Hesita=on to consider septal myectomy as a feasible treatment op=on Referral Iner=a The curse of Status Quo

42 JUGAAD : a word taken from Hindi which captures the meaning of finding a low-cost solu=on to any problem in an intelligent way - Special jus8fica8on for defibrillators / septal reduc8on therapies from the Federal / State government - Ex-serviceman health scheme panels - An in-house charity founda8on that provides substan8al resources to the underprivileged based on need ( Amrita Founda8on - Rotary Pacemaker Bank, which donates new and refurbished devices, available at no cost - Evolving State health insurance schemes ( To include therapies like AICD implanta8on, septal myectomies etc )

43 Amrita HCM Center Our Journey has just begun Fledgling akempt at a formalized center dedicated to HCM care in the developing world We an=cipate it to have a similar impact in the Indian Sub-con=nent We s=ll face numerous obstacles to op=mal delivery ( A steady course and direc=on needed ) Fortunate to have the opportunity to interact and collaborate with the =tans in the field ( No bigger forum for us than this! ) HCM management has advanced by leaps and bounds in the West. Our pa=ents deserve the access to the best possible care at home too.

44 INTERNATIONAL HCM SUMMIT INTERNATIONAL HCM SUMMIT HYPERTROPHIC CARDIOMYOPATHY A Contemporary and Treatable Genetic Disease: Diagnosis, Heart Failure Management, and Prevention of Sudden Death #HCMSummitVI Boston, MA October 2017