The Heart of the Matter

928,741 Reasons to Care

Heart disease and stroke are often thought to be an inevitable facet of aging. This is a dangerous misperception that contributes to the fact that cardiovascular disease is still the #1 cause of disease and death in the United States today.

In fact, the disease process that leads to heart attack and stroke can begin early in life. At the National Institutes of Health in the 1960s, Drs. Michael S. Brown and Joseph L. Goldstein conducted research with children who had low-density lipoprotein cholesterol, or LDL-C, levels 8-10 times normal and who had heart disease in childhood. These children were born with the rare form of familial hypercholesterolemia (FH) – homozygous FH (HoFH). By studying these extreme cases, Drs. Brown and Goldstein discovered the mechanism by which LDL-C is managed in the body. This discovery informed our understanding for millions more who live with high LDL-C, a key driver of the development of atherosclerotic cardiovascular disease (ASCVD). Their insights led to the development of medicines to lower LDL-C and lower risk for heart disease and stroke.

Fifty years after the pioneering work that led to Drs. Brown and Goldstein winning the Nobel Prize in 1985, it seems like an opportune time to pause and reflect on progress we have made, or failed to make, putting this research into practice to save people from heart disease in America.

By every measure, we are failing. After declining for decades, deaths due to cardiovascular disease are on the rise again. In 2020, 928,741 Americans died unnecessarily because of cardiovascular disease, an increase of almost 5% from the prior year.

Today, there is no shortage of medications for managing high LDL-C. Multiple treatments are available and proven to lower LDL-C and lower the risk of heart attacks, the need for stents and coronary artery bypass surgery, stroke, and even death from a cardiovascular event. There are also clear treatment guidelines. The 2018 ACC/AHA Multi-Society Guideline on the Management of Blood Cholesterol establishes recommended LDL-C levels for treating people with existing atherosclerotic cardiovascular disease and high LDL-C.

The Family Heart Foundation asked – “How are we doing with managing LDL-C in high-risk Americans?” To answer this question, we examined the state of LDL-C control in a real-world analysis of 38 million high-risk Americans over approximately 7 years in the Family Heart Database™. What did we find? Well, frankly the results are disturbing:

  • Only 27.8% of all high-risk patients ever reached recommended LDL-C levels.
  • For those who did reach recommended LDL-C levels, they stayed there for less than 6 months at a time, on average.
  • 79.5% of clinicians never prescribed combination cholesterol-lowering medications, though the guideline provides direction and rationale for doing so.
  • Only 2.2% of high-risk patients received combination cholesterol-lowering medications.
  • When we compared two similar groups of high-risk people in this study, one group who stayed “at goal” more than 70% of the time and the other who were “not at goal” more than 70% of the time, the group who did not stay at goal had a 44% higher risk for a cardiovascular event within one year.

LDL-C is the most understood, most modifiable risk factor for cardiovascular disease. Even in high-risk Americans, less than 30% have their LDL-C controlled, resulting in more devastating heart disease and stroke.

We are failing to prevent unnecessary suffering and deaths. There is misalignment of incentives among those in the healthcare delivery system, and the American public is paying the highest price for how the business of healthcare is run today.

What does it look like?

  • Healthcare practitioners are pressed for time to address the needs of their patients and burdened by the administrative demands increasingly foisted on them. Our research shows, that LDL-C often falls to the bottom of the list of priorities, considered something that can be addressed later.
  • While pharmaceutical drug pricing can be a barrier to care, in the LDL-C lowering landscape, many drugs are generic and branded drug prices have been dramatically reduced. Still patients have trouble getting medicines prescribed and paid for.
  • Health insurance companies and pharmacy benefit managers require complicated prior authorization criteria and forms. They also often reject first requests for prescribed therapy, overwhelming busy clinicians with paperwork and appeals.
  • In addition, patients are asked to pay high co-pays for their medications – even for recommended generic medications. Sometimes the copay is more than the actual cost of the drug. Many clinicians and patients simply give up. Insurance plans and pharmacy benefit managers end up being gatekeepers, delaying and even denying coverage for appropriate patients, with consequences in the form of higher cardiovascular event rates.
  • In 2014, policy makers removed a quality metric for LDL-C control that could help align incentives for other heart disease and stroke prevention. Reinstating a quality measure could help!
  • Lastly, individuals and family members often don’t understand the disheartening reality of cardiovascular disease or the urgency to take preventive action earlier in life. It is deadly, expensive, and scary, and it is so often preventable today.

We have the tools to dramatically reduce the toll heart disease and stroke take on American families. Let’s work together to overcome barriers to better care. Time is of the essence.

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About the Author: Katherine Wilemon

Katherine Wilemon is the founder and CEO of the Family Heart Foundation, a leading research and advocacy non-profit organization focused on reducing heart disease by driving scientific understanding and evidence-based care of familial hypercholesterolemia (FH) and elevated Lipoprotein(a).