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Hypertrophic Cardiomyopathy Association Hypertrophic Cardiomyopathy Association Community Support for Patients and Families with HCM: Understanding WHO.

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Presentation on theme: "Hypertrophic Cardiomyopathy Association Hypertrophic Cardiomyopathy Association Community Support for Patients and Families with HCM: Understanding WHO."— Presentation transcript:

1 Hypertrophic Cardiomyopathy Association Hypertrophic Cardiomyopathy Association Community Support for Patients and Families with HCM: Understanding WHO these patients are and what they need Content not to be reproduced without permission from HCMA.

2 Navigating can get tricky!

3 Mission: Providing support, advocacy and education to patients, families, the medical community and the public about hypertrophic cardiomyopathy. Vision: The pre-eminent organization improving the lives of those with HCM, preventing untimely deaths and advancing global understanding. Developing and maintaining a network of support for individuals with HCM and their families. Promoting education about the symptoms and treatment options for (1) patients, their families, and (2) their medical providers. Heightening awareness and protecting against sudden cardiac arrest and life threatening arrhythmias and their prevalence within the HCM community. Increasing the number of, and access to, healthcare professionals providing evidence-based treatment of HCM. Promoting research of HCM and broadening access to results with the ultimate goal of eradicating the disease. Positioning the Foundation with adequate budget, staff and volunteer leaders to fulfill the mission, vision and goals. Mission – Vision – Goals and Objectives of the HCMA

4 4 Support and Education 46 Countries 25+ Centers of Excellence 5000 Intake calls Over 30,000 affected or potentially affected HCM’ers in the HCMA database

5 5 HCMA Survey 2014 Average Current Age of participants 49.7 years Average time living with diagnosis of HCM over 10 years 43% have seen an HCM Center of Excellence at least once 42% have had genetic testing

6 6 Before your diagnosis of HCM… What diagnosis were you given to explain your symptoms?

7 7 How would you define YOUR HCM?

8 8 What was the reason for your HCM diagnosis?

9 More about US from the survey More about US from the survey … 37.6% have had septal reduction therapy –17.3% Alcohol septal ablation –80.8% Myectomy 48.7% have ICD’s –Most common risk factor- Family history/history of NSVT/VT –21.1% have had an appropriate shock –74.7% would like to have on demand access to their device data 34.9% have been in Atrial Fibrillation –43.2% are on anticoagulation therapy –36.9% have been cardioverted one or more times

10 10 We have a disconnect… and an opportunity 49.6%

11 11 54% of deaths occur under 54 yrs of age!

12 12 The HCM Myth…. Only athletes are at risk of SCA from HCM Ruptured Ao Indeterminate LVH (10%) Coronary anomalies (18%) 5% 4% Tunnelled LAD 4% 7% 3% 4%4% 4% 18% AS DCM ARVD MVP CAD Other HCM (36%) Ruptured Ao Indeterminate LVH (10%) Coronary anomalies (18%) 5% 4% 7% 3% 4%4% 4% 18% AS DCM MVP CAD Other HCM (36%) Myocarditis We know, thanks to the SCD in Athletes Registry, that approximately 75 young Athletes die each year…and that most will die from HCM….however…

13 Anxiety and Depression in HCM PRE-PUBLICATION



16 PRE-PUBLICATION Analysis is underway – but it appears that up to 40% of the HCM population has unmet needs related to Anxiety and Depression. HCM Centers, Cardiologists and general healthcare providers must improve on methods to measure the mental health burden to the HCM community and provide services to improve QoL

17 17 Our HCM reality… We are diagnosed in mid life (41-55yrs) Our families are not getting screened as much as they should be (only 12% are diagnosed because of family history) There are many HCM’ers hiding in the healthcare system – we suspect GP’s, pulmonology and mental health services. (due to lack of appreciation of true diagnosis) While it remains important to identify youth with HCM, it appears more likely we will find the parents… then have the ability to screen the full family. Our Mental health needs do not appear to be met.

18 18 1999 – goal… quality care within a 5 hr drive of most in USA 2014 – DARN CLOSE HCM Programs in the USA

19 19 Key issues facing the HCMA Health Care Reform Following implementation through to 2014 – dealing with change isnt easy! Access to care Helping to create high quality centers Research funding Member of the Heart and Stroke Coalition signed onto many letters to congress this year alone. Screening debate – who – how and when Looking for better ways to identify people with HCM earlier in a scientific, cost effective and sustainable manner. AED Placement – they should be EVERYWHERE (and should be a part of school and business budgets – not a charity effort) Health Insurance… Fighting for companies to actually abide by the plan document!

20 20 HCM Research!!! HCMR - Novel Markers of Prognosis in Hypertrophic Cardiomyopathy (multicenter) (visit the HCMA Youtube Channel to learn more) Valsartan for Attenuating Disease Evolution In Early Sarcomeric HCM (VANISH) (multicenter) (visit the HCMA Youtube Channel to learn more) Ranolazine - Online data webinar to come this fall Study of Exercise Training in Hypertrophic Cardiomyopathy (RESET-HCM) – (completed and results due soon) Stay tuned to the New HCMA webinar series to learn about these and other research opportunities!

21 21 Navigating the HCMA!  New Association Management Company to handle:  Membership management  Board of Directors - Governance  Incoming phone and emails (non HCM related)  Manage New Support Group program  Management of CoE administrative items  Assist with meeting arrangements  HCMA office staff will continue to:  Process New client intake data  HCM planning calls  Volunteer fundraiser assistance  Conduct regional/national meetings  Appeals letters/advocacy assistance  Manage HCMA database

22 22 Fundraiser Warriors! Olivia Wiggins - $11,500 In memory of her father Beth Herold – riding in honor of her son Zac actively fundraising with a goal of 5K

23 23 Top Donors of 2013-14 60K+ Elizabeth T. McNamee Memorial Fund, Inc. 10K+ Antonini Memorial Golf Outing 5-9.9K- Borisch Foundation, Inc. Barton, Marque Ann Blakey, Susan William Keith John Taylor Babbitt Foundation 1.1K-4.9K GeneDx Strahm, Terry Lynn & Linda Jo Penn, Jim & Gina Stanford HCM Center University of Kansas Hospital Authority Standard Americas, Inc. The San Francisco Foundation Ferraro, Anthony Bruce Schwartz 1K Melia, Richard Lorfink, Robert Kenyon, Patricia Herrmeyer, Scott The Somekh Family Foundation Vangard Charitable Endowment Program Dunne, Keith Campi, Colin Calderone, Philip Swistel, Daniel G. MD Kenyon, Patricia Vanguard Charitable Endowment Program Dunne, Keith Schwartz, Bruce Herrmeyer, Scott First Giving Loomis, Juanita The Community Foundation Kenski, Donna United Way San Joaquin County

24 Want to get more involved?. The HCMA is building an on the ground system of peer to peer support. The new HCMA support/advocacy groups are forming for 2015. If you are interested in participating please attend the break out sessions later today.

25 Thank You to the entire team for making HCM Care the best it can be. Together we are improving the lives of patients and families Worldwide!

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