Heart disease remains the number 1 cause of death among individuals worldwide. To reduce this threat, a variety of screenings are used to monitor heart health, including blood tests to check levels of low-density lipoprotein (LDL) cholesterol, high-density lipoprotein (HDL) cholesterol, and a blood fat called triglycerides. Screening patients in this way can identify people at risk for heart disease and help reduce that risk through lifestyle and when necessary, medications.
While such screening is crucial, there is another lipoprotein that is strongly associated with heart disease risk and is rarely measured. Lipoprotein(a) — often referred to as Lp(a) — is an important genetically determined lipoprotein that increases the risk for both heart disease and stroke. Much like LDL, Lp(a) carries cholesterol in the blood. A simple non-fasting blood test can determine if a person has elevated levels of Lp(a).
One in 5 people have dangerously high levels of Lp(a), a clear risk factor for developing atherosclerosis, heart attacks and strokes. Individuals with elevated Lp(a) may be young, physically fit and appear healthy — until they have a cardiac event. High Lp(a) occurs in all racial and ethnic groups, but it seems to be more common in Black/African Americans and South Asians than in White, Hispanic, or East Asian individuals.
Despite the threat and widespread prevalence of Lp(a), screening rates are exceptionally low. Research from the Family Heart Foundation — a patient-centered nonprofit organization dedicated to improving the lives of families impacted by inherited lipid disorders and LDL-cholesterol — found that between 2012 and 2021, only 1% of adults in the U.S. and 2% of adults with atherosclerotic cardiovascular disease (ASCVD) have had their Lp(a) level measured. In general, patients are not screened until they have at least one cardiac event.
Barriers to Lp(a) screening
A key barrier to broader Lp(a) screening is the lack of awareness about Lp(a) among physicians and patients (Atherosclerosis 2022). Many physicians do not see the value in testing for Lp(a) because there are currently no medications to lower Lp(a) levels. While lifestyle has little or no impact on Lp(a) levels, those with high Lp(a) should work on lowering their LDL cholesterol as much as possible and reducing all other cardiac risk factors to reduce the risk for cardiovascular disease. Several promising Lp(a) medications are being studied in clinical trials. Should these medications prove to be safe and effective they will be added to our lipid lowering armamentarium.
Other challenges to increase Lp(a) screening include the need to standardize Lp(a) tests and establish clear actionable recommendations, (Atherosclerosis 2022) as well as the daunting challenge of finding ways to collaborate with large, complex health systems.
A Proven Model: Success of the FIND Program
To overcome these obstacles, the Family Heart Foundation has developed an innovative program called FIND Lp(a) that is designed to close the gaps in care for individuals with high Lp(a). “FIND” is an acronym for the four key components to the program: Flag, Identify, Network and Deliver. The FIND program leverages clues in health records and implementation science to identify individuals who are most likely to have elevated Lp(a) but have never been tested. In addition, the program aims to improve health outcomes by helping to develop and promote optimal and appropriate diagnosis and treatment for these patients.
FIND Lp(a) builds on the success of the Family Heart Foundation’s FIND FH program, which uses a similar approach to identify patients with familial hypercholesterolemia (FH), another genetic disorder that causes premature ASCVD. FIND Lp(a) leverages the learnings and tools from the FIND FH program, such as its proprietary precision screening model to successfully identify individuals with FH (The Lancet Digital Health 2019).
Like FIND FH, the FIND Lp(a) program is using the Family Heart Database to develop an algorithm which will allow analysis of health records at individual health systems in a HIPAA-compliant fashion to identify patients at risk for elevated Lp(a). Once these patients are identified, providers in these health systems can further evaluate them and determine if they should be screened for Lp(a). Those found to have an elevated Lp(a) will be aggressively treated to lower their overall cardiac risk.
The Power of a Collaborative Learning Network
To have the greatest impact and ensure the unique FIND Lp(a) program reaches its full potential, the Family Heart Foundation is establishing a Collaborative Learning Network (CLN) with many health systems.
The Collaborative Learning Network brings together academic and community health systems with the Family Heart Foundation’s proven FIND model to engage primary care physicians and cardiologists, reach out to patients identified to be at risk, and schedule and complete diagnostic evaluations. Once identified and diagnosed, individuals and their health care teams are offered a network of support and other resources from the Family Heart Foundation. Successful strategies deployed at one health system are rapidly shared with other health systems, and everyone benefits.
Screening has proved to be an effective strategy to reduce the threat of heart disease, and that holds true for screening of high Lp(a). By working together, the collaborative effort between the Family Heart Foundation’s FIND Lp(a) program and partner health systems across the U.S. will accelerate Lp(a) testing in a way that none can do alone. Ultimately, we’ll work together to develop sustainable strategies for addressing elevated Lp(a). Insights from these efforts can help develop best practices and tools that will be widely shared with other health systems.
By becoming a part of routine care, Lp(a) screening, especially early in life, will help individuals – and their physicians – to better understand and manage their lifelong risk for heart disease.