WomenHeart announces findings of first patient research on cholesterol and familial hypercholesterolemia

February 24, 2015 (Washington, DC) – Poor doctor-patient communication, medication cost, and resistance from insurance companies to approve preferred medications and specialist visits were cited by women heart patients as leading reasons for non-adherence to their cholesterol medication, according to the first national survey of patients living with or at risk for heart disease about how they manage cholesterol, a leading risk factor for heart disease. Heart disease is the leading cause of death in women and cholesterol is a modifiable risk factor, that when managed, can help reduce the risk of developing heart disease.

The research was conducted by WomenHeart: The National Coalition for Women with Heart Disease who convened a briefing today on Capitol Hill where these and other key research findings on cholesterol and familial hypercholesterolemia (FH) were presented. The results reviewed the effect of elevated cholesterol levels, highlighted challenges faced by patients with elevated low density lipoprotein (LDL) cholesterol and/or FH, and helped develop policy recommendations.

“The survey and focus group findings indicate a real need to reduce barriers to detection and treatment of cholesterol and/or FH in women, which are both major risk factors for heart disease,” said Mary E. McGowan, Chief Executive Officer, WomenHeart. “We look forward to working with Congress and the medical community to increase awareness of high LDL, FH and other major risk factors for heart disease – the leading cause of death in women - and to implement programs to improve early and accurate diagnosis and proper treatment of heart disease risk factors to improve women’s heart health,” she added.

This national survey on cholesterol and FH included 795 participants with a mean age of 59 who had elevated LDL cholesterol or FH, or both. Highlights of the survey indicated that the mean medication adherence rate of survey participants was only 62%, and fewer than 31% reported eating five or more fruits and vegetables per day, which is the recommended daily intake according to the Department of Health and Human Services’ 2010 Dietary Guidelines.

Since FH runs in families and can be hereditary, individuals with family history of FH should get screened. Among survey participants who are FH patients, most reported that a low number of their family members had been screened for FH, which means some of their family members are likely living with undetected FH.

Survey results also indicated that less than 2% of participants were enrolled in clinical research trials. Yet, surprisingly, more than a third – 40% – said they were interested in participating in and learning more about clinical trials. Research also indicated that a majority of participants also indicated a strong interest in enrolling in clinical trials.

Medical and policy experts issued the following key recommendations based on these findings:

• raise public awareness on the role of nutrition and physical activity to reduce the prevalence of elevated LDL

• address barriers to medication adherence and treatment among patients with elevated LDL and/or FH

• improve access to medication for patients with elevated LDL and/or FH

• increase screenings to detect elevated LDL and FH early; increase screenings of family members of FH patients to improve detection of FH and begin early treatment to help prevent heart disease

• include more women in clinical trials related to cholesterol and FH to better understand prevention, early and accurate diagnosis and proper treatment of these conditions in women

Speakers included:

• The Honorable Joyce Beatty (OH-03)

• Martha Gulati, MD, MS, FACC, FAHA, Associate Professor of Medicine and Clinical Public Health, The Ohio State University

• Stephanie Hammar, patient and WomenHeart Champion

• Catherine Davis Ahmed, Director of Outreach and FH Patient Advocate, The FH Foundation

• The Honorable Lois Capps (CA-24)

• Mary E. McGowan, CEO, WomenHeart: The National Coalition for Women with Heart Disease

This program was sponsored by Amgen and Genzyme: a Sanofi Company.

Thanks to co-sponsoring organizations: American Heart Association, Association of Black Cardiologists, Mended Hearts, National Forum for Heart Disease and Stroke Prevention, National Lipid Association, Preventive Cardiovascular Nurses Association, Society for Women’s Health Research, StopAfib.org and The FH Foundation

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WomenHeart: The National Coalition for Women with Heart Disease

WomenHeart: The National Coalition for Women with Heart Disease is the nation’s only patient- centered organization serving the 43 million American women living with or at risk for heart disease – the leading cause of death for women. WomenHeart is solely devoted to advancing women’s heart health through advocacy, community education, and the nation’s only patient support network for women living with heart disease. WomenHeart is both a coalition and a community of thousands of members nationwide, including women heart patients and their families, healthcare professionals, and health advocates, all committed to helping women live longer, healthier lives.