First Women’s Heart Health Congressional Day in Washington, DC!

Written By: Adam Pick, Patient Advocate, Author & Website Founder
Published: May 9, 2024

It’s not every day that I get invited to participate in a historic patient advocacy effort for women’s heart health.  So, when I learned about the first-ever Women’s Heart Health Congressional Day organized by WomenHeart, Women As One and Medtronic, I quickly booked a flight to Washington, DC.

 

Women's Heart Health Congressional Day
 

Why Organize Women’s Heart Health Congressional Day?

Heart disease in women is a massive health and social burden. For example, heart disease is the number one killer of women causing 1 in 3 deaths every year. And, 49% of women have at least one risk factor including high blood pressure, obesity and stress.

When it comes to our patient community, which focuses on heart valve diseases including aortic valve stenosis, the situation only gets worse.

  • Women are under-diagnosed for aortic stenosis.  The reasons include (i) aortic stenosis presents differently for women compared to men and (ii) women are often reluctant to speak-up about their symptoms.
  • Women with aortic stenosis are under-treated.  If diagnosed with symptomatic severe aortic stenosis, women are up to 35% less likely to get an aortic valve replacement.
  • Women are under-represented in clinical trials. This makes it very difficult to know which specific aortic valve therapies and medical devices provide the best outcomes for women.

 

Dr Roxana Mehran and Adam PickDr. Roxana Mehran and Me

 

“This is a pivotal moment for women’s heart health,” stated Dr. Roxana Mehran, Professor of Medicine and Director of Interventional Cardiovascular Research and Clinical Trials at the Zena and Michael A. Wiener Cardiovascular Institute at Mount Sinai School of Medicine and the founder of Women As One. “Heart disease is regularly undetected, misdiagnosed and under-treated in women.”

 

A “SMART” Physician Roundtable Launches the Day

The Women’s Heart Health Congressional Day got off to a fast start at the National Press Club as patients, doctors, legislators, lobbyists, and the press packed the conference room.  To start the day, a physician roundtable addressed many critical issues including an alarming historical context for gender disparity that was revealed by Dr. Sharrone Hayes, the founder of the Women’s Heart Clinic at the Mayo Clinic.

Here’s a quick video from the physician roundtable.

 

 

We then heard from Dr. Mehran about the long-standing challenges and fundamental lack of clinical trial research specific to women’s heart health. Overall, clinical trial research has not focused on the specific needs of women and heart disease.

However… There was a definitive bright spot in this discussion as Dr. Mehran revealed the initial results of the SMART Clinical Trial. The SMART Trial was a randomized controlled study conducted to understand how valve design differences between two different transcatheter aortic valve replacement (TAVR) devices – the self-expandable Evolut TAVR made by Medtronic and a balloon-expandable TAVR – impacted patients with a small aortic annulus. According to the American Heart Association Journals, the presence of a small aortic annulus represents a clinical challenge in patients with aortic stenosis and is associated with poorer outcomes after aortic valve replacement with increased mortality, ischemic cardiovascular events, and stroke.

 

Small Aortic AnnulusSource: SpringerLink

 

Here are a few of the fascinating results from the SMART Clinical Trial:

  • The trial randomized and treated 716 patients, 87% of which were women, across more than 80 sites worldwide.
  • Medtronic’s Evolut TAVR delivered superior performance compared to the balloon-expanding valve evaluated in small annulus patients, who are primarily women.

 

Medtronic TAVR
Medtronic Evolut TAVR Implanted

 

  • Ready for a really big outcome… Women were 5.5 times less likely to develop bioprosthetic valve dysfunction with the Medtronic Evolut TAVR valve.  This means that the Medtronic Evolut TAVR valve is more likely to be working properly which can help keep patients active and out of the hospital.
  • The initial results from that SMART Trial demonstrated that TAVR valve choice makes a difference as women do better when treated with Medtronic Evolut TAVR.

“The SMART study finally gives us female-specific data that allows us to more effectively treat women with aortic stenosis. It’s a critical step forward in treating women with heart disease,” said Dr. Mehran.

Next up, Dr. Blake Gardner from Intermountain St. George Regional Hospital discussed how his team is harnessing data to enhance the treatment of women coronary heart disease. The session concluded with Dr. John Yeh, from the Office of Research on Women’s Health at The National Institutes of Health, who stressed that the current situation is not just a medical issue, it’s a legislative issue. Dr. Yeh (i) shared what policies are needed to advance women’s heart health initiatives and (ii) discussed the potential impact of the The White House Women’s Health Research Initiative that was signed as an Executive Order earlier this year.

 

Heart Disease Patients Take The Stage

Since starting this website, I’ve been to many medical conferences about heart valve disease.  Unfortunately, I can count on one hand the number of times that patients are included in the event program.   That said, it was a great and welcomed opportunity to join Celina Gorre, the CEO of WomenHeart, and Darian Tymes, an aortic stenosis patient from Alabama, for a panel discussion titled, “Quality of Life Restoration: The Life Changing Impact of Early Diagnosis and Timely Intervention in Women”.

 

Celina Gorrey (WomenHeart) and Adam Pick (HeartValveSurgery.com)Celina Gorre, CEO of WomenHeart, Darian Tymes and Me

 

So you know, I’m not a big fan of public speaking.  But, there was something special about this event that actually made me feel comfortable and even enjoy sharing my story and my learnings about patient advocacy.   Celina did a phenomenal job moderating the session.

 

Darian Tymes - Medtronic Evolut TAVR PatientDarian Tymes, 82, Aortic Stenosis Patient

 

And for Darian… Well… Darian is a firecracker who has had both surgical aortic valve replacement and TAVR.  “I can walk. I can dance. I can cook. I can drive. I can do anything I want to do after my Medtronic TAVR,” stated Darian. “I live life to the fullest every day.” In case you missed Darian’s patient success story video, click here to watch it.

 

Capitol Hill Here We Come!

After the patient roundtable concluded, it was onto Capitol Hill for live break-out sessions with several members of congress.

 

Adam Pick at The Capitol BuildingOutside of the Capitol Building

 

Over the course of 5 hours, we met with several house representatives including Robin Kelly (Illinois), Jen Kiggans (Virginia), Kat Cammack (Florida), Brian Fitzpatrick (Pennsylvania), and Angie Craig (Minnesota).

 

Members of CongressMembers of Congress We Met With at the Capitol

 

The discussions provided an intimate pathway to share our stories, to put a human face to these issues, to convey the important work being done to improve diagnosis, treatment and care for women with aortic stenosis. We also wanted to thank the members of congress for the importance of their roles in considering public policies to help advance our efforts as well.

 

Nina Goodheart Captiol HillMeeting with Representative Robin Kelly from Illinois

 

Many Thanks WomenHeart, Women as One and Medtronic!

On behalf of the all the patients in our community, I would like to extend a mighty thank you to all the people from WomenHeart, Women as One and Medtronic for organizing Women’s Heart Health Congressional Day which ignited a wonderful conversation and awareness to this issue. I was honored to be a part of such a special and meaningful initiative.

 

Medtronic Heart Valve Team

 

There is a lot of work to do when it comes to women and heart disease.  So, let’s get busy!

Related Links:

Keep on tickin!
Adam


Written by Adam Pick
- Patient & Website Founder

Adam Pick, Heart Valve Patient Advocate

Adam Pick is a heart valve patient and author of The Patient's Guide To Heart Valve Surgery. In 2006, Adam founded HeartValveSurgery.com to educate and empower patients. This award-winning website has helped over 10 million people fight heart valve disease. Adam has been featured by the American Heart Association and Medical News Today.

Adam Pick is a heart valve patient and author of The Patient's Guide To Heart Valve Surgery. In 2006, Adam founded HeartValveSurgery.com to educate and empower patients. This award-winning website has helped over 10 million people fight heart valve disease. Adam has been featured by the American Heart Association and Medical News Today.

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