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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.
www.4hcm.org
Navigating can get tricky!
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
Support and Education
2009 2010 2011 2012 2013 20140
1000
2000
3000
4000
5000
6000
7000
8000
9000
Message boardFacebookLinkedIn
• 46 Countries
• 25+ Centers of Excellence
• 5000 Intake calls
• Over 30,000 affected or potentially affected HCM’ers in the HCMA database
5www.4hcm.org
HCMA Survey 2014
3% 3% 5%
16%
24%34%
16%1%
Age range of diagnosis
Under 12 months1 - 5 years6-12 years13-25 years26-40 years41-55 years56-70 yearsover 71 years
Average Current Age of participants 49.7 yearsAverage time living with diagnosis of HCM over 10 years
43% have seen an HCM Center of Excellence at least once42% have had genetic testing
6www.4hcm.org
Asthma (
Including a
thletical
ly or e
xcerci
sed in
duced)
Mitral
Valve P
rolap
se
Anxiety
or pan
ic attack
s
Depres
sion
Innocent M
urmur
Other (Plea
se sp
ecify)
0
100
200
300
400
500
600
700
800
19.6%
13.2%
19.8%
22.7%
52.5%
17.5%
Before your diagnosis of HCM… What diagnosis were you given to explain your symptoms?
7www.4hcm.org
0
100
200
300
400
500
600
700
49.6%
33.9%
1%15.5%
How would you define YOUR HCM?
8www.4hcm.org
0
100
200
300
400
500
600
700
800
52.9%
12.3%
27.7%
1.6%9.7%
What was the reason for your HCM diagnosis?
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
10www.4hcm.org
Found at family screening due to a relatives di-agnosis of HCM
Familial (Runs in the family)0
100
200
300
400
500
600
700
12.3%
We have a disconnect… and an opportunity
49.6%
11www.4hcm.org
0
200
400
600
800
1000
1200
1400
1600
1800
Tota l dea ths U nder 54 y rs U nder 44 y rs U nder 24 y rs
Annual deaths based on CDC database
(1999-2007)
54% of deaths occur under 54 yrs of age!
12
The HCM Myth…. Only athletes are at risk of SCA from HCM
Ruptured Ao
IndeterminateLVH (10%)
Coronaryanomalies
(18%)5%
4%
Tunnelled LAD
4%7%
3%4%
3% 4% 18%
AS
DC
M
AR
VD
MV
PC
AD
Oth
er
HCM(36%)
Ruptured Ao
IndeterminateLVH (10%)
Coronaryanomalies
(18%)5%
4%
4%7%
3%4%
3% 4% 18%
AS
DC
M
MV
PC
AD
Oth
er
HCM(36%)
Myo
carditis
ath-letes
20%
all under 24yrs80%
We know, thanks to the SCD in AthletesRegistry, that approximately 75 youngAthletes die each year…and that mostwill die from HCM….however…
Anxiety and Depression in HCM
PRE-PUBLICATION
Anxiety and Depression in HCM
PRE-PUBLICATION
Anxiety and Depression in HCM
PRE-PUBLICATION
Anxiety and Depression in HCM
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
17www.4hcm.org
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.
18www.4hcm.org
1999 – goal… quality care within a 5 hr drive of most in USA2014 – DARN CLOSE
HCM Programs in the USA
19www.4hcm.org
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!
20www.4hcm.org
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!
21www.4hcm.org
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
22www.4hcm.org
Fundraiser Warriors!
Olivia Wiggins - $11,500In memory of her father
Beth Herold – riding in honor of her son Zac actively fundraising with a goal of 5K
23www.4hcm.org
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 Foundation1.1K-4.9KGeneDx
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
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.
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!
