WOMENHEART ANNOUNCES FINDINGS OF FIRST PATIENT RESEARCH ON CHOLESTEROL AND FAMILIAL HYPERCHOLESTEROLEMIA

Congressional briefing highlights results of national patient research indicating the need to
improve medication adherence, access to medication and enrollment of women in clinical trials;
policy recommendations made to improve adherence
February 24, 2015 (Washington, DC) — Top barriers to medication adherence for women
managing high cholesterol and familial hypercholesterolemia (FH) – both leading risk factors for
the development of heart disease — were forgetting to take medication (23%), experiencing
muscle or bone pain (21%) and intolerance (16 %), according to the first national survey of
patients living with or at risk for heart disease about how they manage cholesterol. 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. FH is a severe and often
hereditary form of high cholesterol that can be easily detected and successfully treated if
diagnosed early, diminishing the chance 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 patient research on cholesterol and FH included 795 participants with a mean age of
59 who had elevated LDL cholesterol or FH, or both. Results of the survey and focus groups
indicated:
 Medication adherence rate was 62% for research participants, whereas across all disease
states, roughly 30-50% of patients are not complying with their treatment regimens
 Medication side effects and poor doctor-patient communication identified as barriers to
medication adherence
WOMENHEART ANNOUNCES FINDINGS OF FIRST PATIENT RESEARCH ON
CHOLESTEROL AND FAMILIAL HYPERCHOLESTEROLEMIA-CONT’D
 Medication cost and resistance from insurance companies to approve preferred
medications and specialist visits were identified as challenges to compliance
 Top co-existing medical conditions reported were high blood pressure (53 %), heart disease
(52 %), and high triglycerides (38 %)
 Low number of family members of FH respondents had been screened for FH – an
hereditary condition that only requires a blood test to diagnose
 83% of those with elevated lipids reported taking a statin
 Participants who saw a lipid specialist for treatment reported positive outcomes
 61% of those with FH reported taking an FH specific medication
 Sixty eight percent reported engaging in the nationally recommended physical activity of
150 minutes or more per week
 Fewer than 31% reported eating five or more fruits and vegetables per day
 59% reported never smoking and 3.3% are current smokers.
 Participants discussed the value of social support.
 Less than 2% were currently participating in clinical research; 40% expressed interest in
participating in and learning more about clinical research specific to LDL or FH
 A majority of participants said they would participate in clinical trials, should they be
deemed eligible.
Since FH runs in families and can be hereditary, individuals with family history of FH should get
screened early. Among research 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, which can lead to the development of heart
disease.
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:
 Early detection and treatment of these disorders is a priority as this may reduce the
impact of, or dramatically delay the development of CVD and prevent costly
hospitalizations for cardiovascular procedures later in life.
 Access to medications and specialty care is essential for proper treatment.
 Addressing the barriers to medication adherence and treatment in this patient population
is vital to reduce the associated risk for CVD.
 Among those with FH, there is a need for education and follow-up to increase cascade
screening rates of family members for improved detection and early treatment.
 Information and access to participation in clinical research related to LDL or FH needs to
be more widely promoted and more women need to be included in clinical research.
Speakers included:
WOMENHEART ANNOUNCES FINDINGS OF FIRST PATIENT RESEARCH ON
CHOLESTEROL AND FAMILIAL HYPERCHOLESTEROLEMIA-CONT’D

 

 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. To join or donate, visit www.womenheart.org.

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