Familial Hypercholesterolemia Phase 1

Additional Information on Phase 1 FH Approaches

Providing information to policy makers so that they can make evidence-based decisions about ascertainment and treatment issues

Example: Connecticut
In 2010, the Genomics Office in the Connecticut Department of Public Health researched the genomics content in state CVD and stroke prevention plans for goals and strategies relating to genetics/genomics. Preliminary findings indicated that 26 states have such plans, and these plans were reviewed using terms such as “genetic”, “genomic”, “heredity”, “inherited”, “susceptibility”, etc. The term “Familial Hypercholesterolemia” was not searched per se, but it does not appear to be utilized in any of the plans. In general, plans that mention genetic factors, tend to discuss these as immutable risk factors; on the other hand some indicate that knowing one’s family history allows one to consider options for lowering cholesterol, etc., and may help reduce morbidity and mortality.

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Surveillance indicators development and tracking

OPHG is currently leading an effort to develop FH surveillance indicators from a federal level perspective. Efforts to identify appropriate FH surveillance indicators that are relevant at the individual state level are also important. Once this process is completed, opportunities and challenges will be clarified in regard to assessing the burden within states and measuring the impact of interventions.

Healthy People 2020: Although there is not a Healthy People 2020 objective that addresses FH directly, programs that focus on FH can contribute toward other national heart objectives from Healthy People 2020. Two of the national heart objectives for the year 2020 are to reduce to 13.5% the percentage of adults aged 20 years or older with total blood cholesterol levels of 240 mg/dL or greater, 15.0% of adults aged 20 years and older had total blood cholesterol levels of 240 mg/dL or greater in 2005–08 (age adjusted to the year 2000 standard population) according to the National Health and Nutrition Examination Survey (NHIS), CDC, NCHS.

A second goal is to increase to 82.1% the percentage of adults who had their blood cholesterol checked during the preceding 5 years (HP 2010). 74.6% of adults aged 18 years and older had their blood cholesterol checked within the preceding 5 years in 2008 (age adjusted to the year 2000 standard population) according to the National Health Interview Survey (NHIS), CDC, NCHS.

A third goal is to reduce the mean total blood cholesterol levels among adults to 177.9 mg/dl when 197.7 mg/dl was the mean total blood cholesterol level for adults aged 20 years and older in 2005 – 2008 (age adjusted to the year 2000 standard population).

Example: Connecticut
The Connecticut Department of Public Health added questions relating to FH to their Behavioral Risk Factor Surveillance System (BRFSS) in 2013.

  1. Do you have a close male relative, such as your father, son, or brother, who had a heart attack before the age of 50?
  2. Do you have a close female relative, such as your mother, daughter, or sister, who had a heart attack before the age of 60?
  3. Has a doctor, nurse or other health professional ever discussed with you a type of high cholesterol that runs in families called familial hypercholesterolemia?

Example: Michigan
The Michigan Sudden Cardiac Death of the Young (SCDY) Surveillance and Prevention project identified 3,134 SCDY deaths occurring in Michigan between 1999 and 2009. Although not focused on FH per se, some of the young people surveyed and impacted through the Michigan Sudden Cardiac Death of the Young Surveillance and Prevention Project undoubtedly have or had FH. More specifically, atherosclerotic cardiovascular disease was the top cause of SCDY death between 1 and 39 years of age. Michigan is addressing 21 strategies to prevent SCDY.

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Education outreach / clinical activities

Hundreds of thousands of Americans are affected by FH and yet many are not even aware that they are at risk of early death from cardiovascular disease. Furthermore, people in need of FH treatment are often missed by the healthcare system either because their cholesterol/lipids are not screened or because the cause of their high cholesterol is misunderstood. Because of this, there is a strong need for public health education outreach to inform health care providers, payers, consumers, and policy makers of the need for early cholesterol screening and of the warning signs of FH to enable prompt identification and treatment of the condition. The style, format, and information included in communication vehicles may vary depending on the population within each state, but examples produced by CDC or other states can be helpful as a guide. Please see the “FH tools and educational materials” section for more information including communication resources for Tier 1 FH applications.

Example: Utah
Utah developed a program focusing on family history and FH. Although the program is no longer active, there are many lessons to be learned from this project.

Example: West Virginia
Working with the West Virginia Department of Health and Human Resources, the CARDIAC-FH (Coronary Artery Risk Detection in Appalachian Communities – Familial Hypercholesterolemia) Project based at West Virginia University offers blood testing, LDL receptor analysis and detailed family history of heart disease to identify family members with FH. They are working to establish a state-wide registry of patients with FH to help identify other family members, so that they can help them with treatment before they experience a life threatening cardiac event. For more information, call (304) 293-4224 or visit their website at https://www.cardiacwv.org/. In addition, a West Virginia statewide screening preogram of fifth graders from an AHRQ “Health Care Innovations Exchange” project has lead to identification and treatment of those with genetic predisposition to early-onset heart disease.

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