FH Optimal Care in the US (FOCUS) Real-World Data Analysis Report – 2018
Opportunity to Improve FH Diagnosis
Individuals with FH are at High Risk
FH Treatments are Underused
PCSK9 inhibitor Prescriptions are Rejected or Unfilled at High Rates
Diagnosed FH: This category represents individuals with the ICD-10 diagnosis code for Familial Hypercholesterolemia, E78.01. E78.01 has been in effect since October 2016. While FH diagnosis and use of the diagnosis code E78.01 is improving, at the end of 2018 the total number of individuals in the database with this code was 197,479, or approximately 15% of the estimated 1.3 million people in the US with FH.
Undiagnosed Probable FH: This category represents individuals identified with the FH Foundation’s FIND FH® Machine Learning model, but who do not have E78.01 in their record. The Undiagnosed Probable FH prevalence is higher in the FH Foundation’s database than in the general population because this is a database of individuals with diagnosis or procedure codes related to the evaluation or treatment of cardiovascular disease and risk factors.
ASCVD: Atherosclerotic Cardiovascular Disease, defined as myocardial infarction (heart attack), stable or unstable angina, need for revascularization (stent or coronary artery bypass graft surgery), stroke, transient ischemic attack, abdominal aortic aneurysm, and peripheral arterial disease.
Rejected: Final prescription coverage status was rejected by insurance.
Paid: Individuals were approved by insurance and received 338 or more days of therapy within 12 months.
Unfilled: The prescription was approved by insurance but not filled.
Cardiovascular Event: Myocardial Infarction (MI), ischemic stroke, coronary artery bypass graft (CABG), Percutaneous Coronary Intervention (PCI – stents), Cardiac Arrest, acute ischemic heart disease (Acute Coronary Syndrome), or unstable angina.
Ask the FH Foundation
Need help navigating insurance? Want help finding an FH specialist? We’re here to support you!
Navigating Insurance Guides
Questions on how to get approval? Experiencing insurance denials? Check out our resources.
We need your generous support
Make a difference by delivering research, education and advocacy to those impacted by FH