Download The Familial Hypercholesterolemia Foundation Cat Davis Ahmed

Familial Hypercholesterolemia
Foundation
Patient Engagement and the
Assessment of Value
Cat Davis Ahmed
Director of Outreach
Where is the Value
in working with Advocacy
Organizations?
1.
PROMOTE AWARENESS OF FH at both the provider and patient levels.
1.
EVALUATE PATTERNS OF REAL-WORLD CLINICAL PRACTICE AND PATIENT EXPERIENCE
1.
CONTRIBUTE TO THE STATE OF SCIENTIFIC KNOWLEDGE OF FH
2.
IMPROVE HEALTH OUTCOMES, quality of life, and impact policy decisions.
CASCADE FH™ Clinical Sites
Data from the CASCADE FH™ Registry
Late Diagnosis and Treatment
GUIDELINES FOR SCREENING
Universal screening
9-11 yrs1,2
FH Screening
Adult Screening
2 yrs1
21 yrs3
AGE 0
10
20
Treatment initiation4
8-10 yrs
30
40
Age 39 hyperlipidemia therapy initiated
CASCADE FH™ Registry5
GUIDELINES FOR TREATMENT
1The
CASCADE FH™ Registry
Age 475 diagnosed with FH5
AAP recommends screening for high cholesterol at age 2 if child has two parents
with FH or high cholesterol; universal screening ages 9-11
2EAS Guidelines recommend universal screening for cholesterol ages 9-11
3ACC/AHA Adult Guidelines recommend universal screening of adults at age 21
4EAS Guidelines recommend US statin initiation for at ages 8-10 for FH
5CASCADE FH™ Registry participants are initiating lipid-lowering therapy at age 39 and
receiving an appropriate diagnosis of FH at age 47
50
High Prevalence of Coronary Heart Disease
5-7-Fold Higher
US CASCADE-FH
US NHANES
deGoma et al. Circ CV Genetics.
2016
AHA Heart
Disease and Stroke Statistics 2014 Update: NHANES 2007-2010 prevalence of CHD age 40-59.
Goal Attainment
UK 2008
CASCADE-FH
Netherlands 2010
Treated LDL-C<100 mg/dl
Reduction in LDL-C≥50%
Pijlman Atherosclerosis 2010;209:189. Hadfield Annals Clin Biochem 2008;45:199.
Publication of CASCADE FH Registry Data
FIND FH®
A multiyear screening and engagement initiative to identify
and encourage the diagnosis and treatment of FH
Lab & Claims Data Mining
•
Lab & Claims
Algorithm
EHR
Algorithm
•
The
FH Foundation
EHR Data Mining
•
HCP &
Individual
Engagement
Healthcare Encounter Data on 89
Million Americans with
Cardiovascular Disease
Data from a significant majority of
clinical practices
•
Comprehensive EHR data from two
academic centers
Expanding to key integrated health
systems
HCP & Individual Engagement
•
•
Multichannel tools to engage
health systems and individual HCPs
Tools for clinicians and individuals
with FH
®
Foundation Level Sponsor
Initial Founding Sponsor
Sponsors
National Innovator Award
FIND FH® Lab & Claims Algorithm Developed by The FH Foundation
Claims Data Source: IMS Health Real World Data: LRx longitudinal prescriptions and Dx medical claims
FH Optimal Care in the U.S.
(FOCUS) Survey
In the last 12 months, has your insurance company
denied coverage for any of your FH treatment(s)?
Yes
74.0% PCSK9 Inhibitor 26%
(34% Secondary Prevention)
No
54%
I don't know
13%
0%
Answered: 138/148
10%
20%
30%
40%
50%
60%
Thank you
Cat Davis Ahmed
[email protected]
www.theFHfoundation.org