Key Highlights from the FH Global Summit 2019

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Welcome to our 4th and final installment of our 2019 FH Global Summit 4-part series. If you missed our previous edition, you can read it here.

Keynote: Towards More Precision in Cardiovascular Disease Prevention

In her keynote address, Dr. Kirsten Bibbins-Domingo, former head of the US Preventive Services Task Force (USPSTF), outlined how they made their recommendations for statin use in adults and lipid screening in children and adolescents. With the motto of “do no harm,”Dr. Bibbins-Domingo explained that these recommendations are designed for use by general practitioners who are evaluating individuals in a clinical setting with no sign of disease. She said that with the Affordable Care Act in the United States, “A” and “B” recommendations are supposed to be covered as a baseline by insurance plans, but noted that the task force was not implying that other recommendations should not also be covered. Dr. Bibbins-Domingo stressed that the most important time to get involved with the recommendations is at the “research plan” design phase, when the task force determines the scope of their research. During the discussion session, several individuals highlighted the importance of the FH community's involvement with these recommendations moving forward.

Patient-driven Healthcare in the Real World

Dr. Laura Hayman kicked off this session by emphasizing how to engage children in diet and physical activity to support heart disease prevention in the school setting. She highlighted the success of the CARDIAC (Coronary Artery Risk Detection in Appalachian Communities) project, that was led by FH Foundation Chairman Emeritus William Neal, MD, which successfully identified children with FH through school-based lipid screening. School-based health clinics can also provide a safety net for children who are underserved and underinsured.

"Schools are a great place for universal screening." – Laura L. Hayman, PhD, MSN

A key theme presented by Dr. Fátima Rodriguez’s presentation was social determinants of health, noting that “less than 50% of patients with myocardial infarction are on statins one year following their event.” Dr. Rodriguez shared a moving case study of a 72-year-old Spanish-speaking woman seen at Stanford’s clinic following a heart attack. The woman had not understood the importance of the medicines her doctor had prescribed and thus never filled her prescriptions. The case study also concluded that her initial medicine reconciliation was inadequate. Dr. Rodriguez underscored the lack of a sense of urgency in our society to treat cholesterol and how the media perpetuates many myths about statin use.

"Hyperlipidemia isn't scary. We need to make this scary." – Fátima Rodriguez, MD, MPH

Slide presented by Dr. Fátima Rodriguez

Slide presented by Dr. Laura L. Hayman

Disparities in Care

Beginning with a quote from Martin Luther King – “Of all the forms of inequality, injustice in health is the most shocking and inhumane” – Dr. Laurence Sperling illustrated how where someone is born and where they live (down to the zip code) can be a greater determinant of their outcome than traditional risk factors. In the Atlanta area alone, he noted, there exists the equivalent to low- middle- and high-income countries. Mrs. Sandra Murphy, an individual with FH, shared that it took a heart attack, bypass surgery and multiple procedures to understand that her high cholesterol needed to be treated and that it was due to a genetic condition (FH) has. Now, on multiple treatments, Mrs. Murphy uses her apheresis port as a conversation starter to tell others to check and manage their cholesterol.

Slide presented by Dr. Laurence S. Sperling

Healthcare System Behavior Change

Today, pediatric cholesterol screening is not universally administered in the United States. Dr. Amy Peterson shared best practices for engaging pediatricians within the UW Health system, boiling it down to “teach and make it easy to screen.” The system has a 58% total screening rate which has improved through: Education including grand rounds and materials Modifying the EHR system to simplify ordering Ensuring labs use the right reference ranges "Outside of this room, practitioners and parents do not look at a child and think they could be at risk for heart disease. They need data to drive that decision-making." – Amy L. Peterson, MD The renowned Dr. Nanette Wenger highlighted her “Operator’s Manual for the Heart,” a shared decision-making tool for women and heart disease. Importantly, she stressed the management of other risk factors for heart disease including smoking cessation, diet and exercise. "Individuals with FH are not immune from other risk factors." – Nanette K. Wenger, MD, MACC