Hello,
The WomenHeart Beat is our new advocacy newsletter where we share updates on some of WomenHeart’s policy priorities, information about innovations in treatment and care for women living with or at risk of heart disease, a WomenHeart advocate spotlight, clinical trial information, and information about Advocacy Corpos.
Patient Empowerment Summit & Advocacy Day Updates
On January 31 and February 1, 2024, WomenHeart held its first annual Patient Empowerment Summit & Advocacy Day with 97 meetings on Capitol Hill supporting 3 legislative priorities and a Resolution. Here is an update:
Policy Updates
Resolution—"National Cholesterol Awareness Education Month” and “LDL-C Awareness Day ” encourages Americans to learn their LDL-C numbers and lower them if they are too high. It declares September 2024 as “National Cholesterol Education Month” and September 30, 2024 as “LDL-C Awareness Day” and was agreed to by unanimous consent in the Senate on March 8, 2024.
The Heart Health Enhancement through Access to Research and Training Act (HEART Act) H.R. 880 establishing a grant program to that will allow training and education programs on heart disease in women for hospitals, community health centers, and for medical students has been referred to the Subcommittee on Health. Learn more (link: R.880 - 118th Congress (2023-2024): Heart Health Enhancement through Access to Research and Training Act | Congress.gov | Library of Congress [[link removed]] )
The Safe Step Act —This bipartisan legislation was designed to place limits on step therapy by requiring group health plans to establish an exemption process for medication step therapy protocols.
The Treat and Reduce Obesity Act (TROA, S.2407/H.R.4818), a bipartisan and bicameral bill, would expand Medicare Part D coverage for treatment for obesity including coverage for drugs used to treat obesity and for intensive behavioral therapy for people who are overweight. (link to WomenHeart one pager)
Obesity - A Women's Health Issue
Due to its strong connection with heart disease and the fact that one in four women in the U.S. today are living with obesity, WomenHeart and many other women’s health organizations are addressing obesity as a women’s health issue. Historically, and still today, obesity is often seen as a moral failing—something people caused themselves and could easily fix by exercising more and eating better. The reality is that obesity can be caused by a variety of factors including genetic, metabolic, environmental and behavioral factors.
Women in midlife are most at risk for obesity with an average weight gain of 1.5 pounds each year during midlife and increased fat around the middle due to factors related to aging, estrogen level decreases after menopause, and issues related to menopause like sleep and mood disturbances, heart palpitations and hot flashes that may make it more difficult to adopt a healthy lifestyle.
We also know that social stigma around having heart disease and/or having risk factors for heart disease such as obesity, smoking, unhealthy diet, and lack of physical activity, can prevent patients from exploring their risks, seeking treatment and/or sharing health information with their doctors, family and peers.
WomenHeart’s support of TROA (details above) is just one part of a broader stance on obesity as a women’s health issue. Treatment for obesity requires an individual and comprehensive approach.
So, what can we at WomenHeart do to help lower the prevalence of obesity and the risks that go along with it?
Begin or continue to encourage our representatives to support TROA.
Learn more about obesity and its link to heart disease.
Stop the stigma by recognizing that obesity is a chronic disease and a women's health issue. There are many causes of obesity in women.
Get support when you need it. It is much easier to manage obesity and lead a healthy lifestyle when you do it with others who enocurage and support you.
Advocate Spotlight
Meg McCormick has been a powerful leader and a strong voice and mentor for women living with heart disease nationally and focused in the western U.S. Among many advocacy activities, Meg has participated in WomenHeart’s Patient Empowerment Summit and Advocacy Day, met with her Congress Members on Capitol Hill, created training videos to support WomenHeart's awareness plans, and engaged with local law makers. Meg also utilizes her Spotify Podcast "Dying Complicates Life" to bring added exposure to living with heart disease.
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One project Meg is passionate about and could save lives is an “In case of Emergency” one-pager she created that provides emergency workers with a patient’s full cardiac/health history at-a-glance. Meg is currently working at state and national levels to get this emergency one-pager to be a standard form in every household. This vital information can save time in an emergency and allow for consistency and accuracy of information.
Meg says she is blessed to work with and mentor many WomenHeart Champions and couldn’t be prouder of the work these women are doing and the impact they are making! From introducing product line exposure to speaking and writing books, these women represent the elite! Meg loves her WomenHeart Sisters and is proud to be part of WomenHeart.
Clinical Trials
Clinical trials are essential for the development of new therapies for treating heart disease, yet it can be difficult to recruit people, especially women, to participate in clinical trials for heart disease treatments. Also, some people enroll in clinical trials but then discontinue the trial. These two issues can make it harder for companies to bring new medications and devices to market for patients and they can increase the cost of these medications and devices.
Women, in particular, are often underrepresented in clinical trials for heart disease which means we don’t have enough information on how the medications and devices tested in the trials work for or affect women. Women are also more likely than men to discontinue a clinical trial. This can create difficulty when it comes to finding the best evidence-based care for women because clinical practice guidelines are created based on clinical trial data.
Because of these issues, WomenHeart, in partnership with The Mended Hearts, Inc. and Cytokinetics, is creating ENACT (Empower Navigate, Activate for Clinical Trials) to improve trial recruitment and retention to increase access to innovative therapies and to improve care for all patients living with heart disease. This program will guide patients through the clinical trials journey—both the physical and emotional aspects of learning about trials, enrolling, participating and completing a trial. This program will begin with a focus on hypertrophic cardiomyopathy (HCM) but will be a basis for education on a variety of types of heart disease.
Recent Clinical Trial Advocacy Initiatives
Clinical Trial Modernization Act R. 8412 bipartisan legislation to improve access to clinical trials, especially for those who are underrepresented. Recent FDA Guidelines
On June 26, 2024, the U.S. Food and Drug Administration issued a draft guidance [[link removed]] , “ Diversity Action Plans to Improve Enrollment of Participants from Underrepresented Populations in Clinical Studies ,” for companies that are conducting clinical trials to have Diversity Action Plans. FDA Guidance Provides New Details on Diversity Action Plans Required for Certain Clinical Studies | FDA [[link removed]]
“Participants in clinical trials should be representative of the patients who will use the medical products,” said FDA Commissioner Robert M. Califf, M.D.
Sponsored
The CORALreef Outcomes clinical research study is testing an investigational medication in adults to learn about how it works to lower cholesterol and see if it reduces cardiovascular events compared to a placebo. You may be able to take part in this study if you are at least 18 years of age, have high cholesterol, and have had or are at risk of having a major cardiovascular event such as a heart attack or stroke. You must also be taking medication and/or supplements to lower your cholesterol. Learn more at [link removed] [[link removed]] .
Advocacy Corps
WomenHeart’s Advocacy Corps is a program made up of WomenHeart Champions —women who have lived experiences with heart disease and are trained to share their stories and advocate for better health for all women. Advocacy Corps allows women’s stories and advocacy activities to be coordinated and amplified for greater impact so WomenHeart can meaningfully engage in advocacy initiatives that improve the lives of women living with and at risk of heart disease.
WomenHeart Champions who are part of Advocacy Corps receive: advocacy training, quarterly virtual meetings, priority for advocacy day attendance, option to participate in speaking opportunities.
If you are a WomenHeart Champion and would like to join Advocacy Corps, there will be a 30-minute informational meeting on October 25 at 12:30 p.m. Eastern time. See your Champion Digest for more details. You can also email us at
[email protected].
Advocacy Corps would not be possible without the generous support of our Advocacy Corps sponsors:
Bristol Myers Squibb®
CORALreef Outcomes
Merck
Our Contact Information
WomenHeart Donate [[link removed]]
712 H Street, NE, Suite 2201
Washington, DC 20002
202-728-7199
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