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

AGE GUIDELINES FOR SCREENING GUIDELINES FOR TREATMENT FH Screening 2 yrs 1 Universal screening 9-11 yrs 1,2 Adult Screening 21 yrs 3 CASCADE FH™ Registry Age 47 5 diagnosed with FH 5 Treatment initiation yrs Age 39 hyperlipidemia therapy initiated CASCADE FH™ Registry 5 1 The AAP recommends screening for high cholesterol at age 2 if child has two parents with FH or high cholesterol; universal screening ages EAS Guidelines recommend universal screening for cholesterol ages ACC/AHA Adult Guidelines recommend universal screening of adults at age 21 4 EAS Guidelines recommend US statin initiation for at ages 8-10 for FH 5 CASCADE FH™ Registry participants are initiating lipid-lowering therapy at age 39 and receiving an appropriate diagnosis of FH at age 47 Data from the CASCADE FH™ Registry Late Diagnosis and Treatment

High Prevalence of Coronary Heart Disease 5-7-Fold Higher US NHANES US CASCADE-FH AHA Heart Disease and Stroke Statistics 2014 Update: NHANES prevalence of CHD age deGoma et al. Circ CV Genetics. 2016

Goal Attainment CASCADE-FH UK 2008 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 HCP & Individual Engagement Lab & Claims Algorithm Lab & Claims Data Mining Healthcare Encounter Data on 89 Million Americans with Cardiovascular Disease Data from a significant majority of clinical practices EHR Data Mining 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 EHR Algorithm EHR Algorithm The FH Foundation

National Innovator Award Foundation Level Sponsor Initial Founding Sponsor ® 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 Sponsors

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)? Answered: 138/ % PCSK9 Inhibitor (34% Secondary Prevention)

Thank you Cat Davis Ahmed