Advocacy Highlights 2023

2023 Family Heart Advocacy Highlights

The Family Heart Foundation wouldn’t be where it is today without the help of our Family Heart community. The key to raising awareness is by getting the message out, and our community is dedicated to this mission. In 2023, we saw our social media reach increase by 6% - with over 6 million media impressions!

Here are a few highlights of our advocacy work in 2023:

New Advocate Class

In June, we welcomed a new class of Family Heart Foundation Advocates for Awareness. For three days, these incredible volunteers connected with each other, learned more about of familial hypercholesterolemia (FH), elevated lipoprotein(a), or Lp(a), and cardiovascular disease, and prepared to raise awareness.

FH and Lp(a) Awareness Days

The Family Heart Foundation established FH Awareness Day (September 24) in 2012 and Lp(a) Awareness Day (March 24) in 2022 to help raise awareness of these inherited disorders and activate our community. Through national and local media, along with social media engagement, we draw attention to these important genetic conditions and encourage everyone to join the movement.

This year’s Awareness Day messages reached over 149 million people across national, local, and social media.

Amplifying Community Voices

Our community’s stories are impactful and the living proof of the affects untreated FH and Lp(a) can have on families and individuals. This year we shared multiple blogs and videos of our community sharing their stories.

Letting the Community Lead the Conversation

This year we debuted the “Ask Me Anything” series and gave our community the chance to lead the conversation. By calling for questions on social media, we let individuals living with FH and high Lp(a) get their questions answered by leading experts in the field of cardiovascular care. We aired 5 in 2023 alone.

Visiting Capitol Hill

On October 3, after the conclusion of another successful Global Summit, the Family Heart Foundation hosted a congressional briefing at the Rayburn House Office building on Capitol Hill entitled, “Opportunities to Reduce the Rising Tide of Heart Disease Through Better LDL-Cholesterol Management.” In conjunction with the briefing, the Family Heart Foundation released a new policy paper on “Prioritizing LDL-Cholesterol Control” which contains important recommendations for policy makers, patients, healthcare practitioners, and payers.

The briefing was co-sponsored by the Association of Black Cardiologists (ABC) and the American Society for Preventive Cardiology (ASPC) and was attended by over 50 Family Heart Advocates for Awareness, congressional staffers, healthcare practitioners, and members of the cardiovascular advocacy community. The session was moderated by Hilly Paige, Jr, the Chief Innovation officer for the Family Heart Foundation. Panelists included Dr. Seth Baum, the Chief Scientific Officer at Flourish Research and past president of ASPC, Dr. Keith Ferdinand, the Gerald S. Berenson Endowed Chair in Preventive Cardiology and Professor of Medicine at Tulane School of Medicine, and Ora Williams, a Family Heart Foundation Advocate for Awareness. Both Drs. Baum and Ferdinand serve on the Board of Directors for the Family Heart Foundation.

Congressional Briefing 2023
Congressional Briefing 2023

Collaboration with The Atlantic

In April of 2023, we were invited to moderate and participate The Atlantic's 2023 Health Equity Summit in the session titles “Heart of the Matter: Addressing a Public Health Crisis of Inequitable Proportion.” The session have over 60 in-person attendees and was viewed by more than 53,000 people virtually. The following month, a digital publication was released by The Atlantic called “The Heart of the Matter” featuring data from the Family Heart Foundation.

 

The Atlantic - Heart of the Matter
The Atlantic - Heart of the Matter

Responding to the USPSTF

On January 24, 2023, the US Preventive Services Task Force (USPSTF) released their draft recommendation based on evidence of the benefits and harms of screening for lipid disorders, including familial hypercholesterolemia (FH), in children and adolescents aged 20 or younger. This is an update to their 2016 recommendation. In it, they said there was insufficient evidence to recommend screening for lipid disorders in children and adolescents 20 years or younger. The 2023 draft recommendation is the same. The Family Heart Foundation submitted public comments, signed by medical professionals, organizations, and individuals affected by FH and homozygous FH (HoFH) that strongly disagreeing with this conclusion and asked the USPSTF to reconsider.

In November, our founder and CEO, Katherine Wilemon, co-authored a Letter to the Editor in the Journal of the American Medical Association outlining the need for universal pediatric lipid screening to eliminate inequities in US healthcare. You can read it here.

Family Heart Foundation Chief Medical Officer, Dr. Mary McGowan, also co-authored a Letter to the Editor in the same journal responding to the USPSTF. In it, they make the point that treating FH, particularly homozygous FH, as early as possible gives children the best chance to avoid early and aggressive heart disease. You can read the letter here.

Learn more about this recommendation and why it needs to be challenged.

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