Heart disease, which refers to several types of heart conditions, such as ischemic heart disease and heart failure, is the leading cause of death in both women and men in the United States. Yet only 44% of women recognize the risk of death from heart disease. Women’s heart health has long been understudied and ignored, and for years assumed to be like men’s heart health (in terms of symptoms, presentation, risk factors, effective prevention and care.). We now know this to be false – and are seeing the many gaps and differences involved in women’s heart health.
On September 21, 2023, the Society for Women’s Health Research (SWHR) convened an interdisciplinary working group of policy experts, researchers, clinicians, and patient advocates for a roundtable discussion on women’s heart health experiences, clinical gaps, and policy opportunities. During the meeting, the group discussed how women are continually overlooked in heart health research and clinical care and how to address these gaps. Key themes that emerged over the course of the conversation included the need for education on heart disease prevention; the importance of addressing disparities in cardiovascular disease across populations of women; and the need to listen to women’s voices.
Historic Gaps in Heart Health
Historically, the heart was largely studied in men. This gap, working group members agreed, has created foundational gaps in women’s heart health, resulting in researchers, clinicians, and other providers not fully understanding how a women’s heart functions differently. “Women are always treated as the second sex,” said Martha Gulati, MD, MS, FACC, FAHA, FASPC, Director of Preventive Cardiology at the Smidt Heart Institute at Cedars Sinai. In 1991, the National Heart, Lung, and Blood Institute (NHLBI) placed a national spotlight on women’s cardiovascular disease through the launch of the Women’s Health Initiative. This $625 million, 15-year study of more than 160,000 postmenopausal women sought to better understand some of the most common diseases that affect women after menopause, including heart disease. While the Women’s Health Initiative elevated women’s heart health, female-specific cardiology research remains rare.
Working group members agreed that not enough research is being conducted on women’s heart disease and its related risks, symptoms, and care considerations. A recent study cited by Dr. Gulati found that women remain underrepresented in cardiovascular disease trials, and specifically younger women (under 55), non-white women, and pregnant women. Dr. Gulati recalls once being told that women are considered a ‘special interest group’ when it comes to heart health research, to which she firmly replied, “We’re not.” Understanding how sex differences play a role in women’s heart health—across conditions, across different geographies, and among different racial and ethnic populations—is a public health imperative.
Getting Clearer in Clinician Conversations
There is also a need for improved clinician education and communication in this space. “The medical community doesn’t talk to women about heart disease, period,” said Rachel D’Souza, MPPA, Founder and Chief Purpose Officer of Gladiator Consulting and a heart health patient advocate. “I went to all my [doctor’s] appointments, but I wasn’t thinking about my heart during that time. I wish we had a health care system that taught me to know what to look out for or gave me access to the information I needed for my heart.” D’Souza experienced a spontaneous coronary artery dissection (SCAD) at 28. SCAD is a leading cause of pregnancy-associated heart attacks but is still highly under-researched.
The language used to share how to live “heart healthy” across populations and in all life stages is also important. Messaging must consider populations’ native languages, generational differences, and health literacy levels. Providers should also discuss heart disease prevention as much as disease intervention to ensure heart healthy habits can be implemented early and across women’s lifespans and through significant life events, such as pregnancy. Said differently, having heart health conversations early and often is crucial.
Primary care and specialty care providers, including physicians, obstetricians, cardiologists, nurse practitioners, midwives, and other members of the health care team all have a role to play. While cardiology may come up for some maternal health care teams, team-based care needs to exist outside of pregnancy, too, noted Imo Ebong, MBBS, MS, Associate Professor at UC Davis Health. Rheumatologists, oncologists, and other specialty providers needed to be aware of their patients’ potential cardiology issues and be prepared to engage with cardiologists. Having cardiologists available in rural and telehealth settings could help improve access to timely and preventative heart health care as well. In Dr. Gulati’s office, her team saw a large increase in attendance at general postpartum and cardiology check-up visits when they were offered through telehealth; when health care is accessible, individuals will take advantage of it.
Finally, improving heart health will take new investment in medical training. Cardiology is still a primarily white- and male-dominated field. Greater diversity and improved implicit bias training across health care would go a long way to positively impacting women’s health outcomes. To ‘future-proof’ the cardiology workforce, the working group called for increasing funding for diverse cardiology programs; diversifying related health professionals overall; improving implicit bias training in medicine; offering training that is informed by diverse patient experiences; and integrating patient perspectives into care plans.
Upping the Beat of Heart Health Policy
From the hospital to the Hill, the working group also listed a range of policy gaps and improvement opportunities, with care access and reimbursement being a top priority.
“We have a perverse reimbursement system, and we pay for disease in this country,” said Susan Kendig, JD, WHNP-BC-FAANP, Director of WHNP Practice and Policy at the National Association of Nurse Practitioners in Women’s Health (NPWH). If policies were put in place to require, or even incentivize, clinical community integration, there could be an immense opportunity to close care gaps, the working group agreed. Offering affordable and accessible health insurance plans that cover a full range of needed health benefits is also an important piece of the puzzle, noted Emily Horowitz, Federal Government Relations Manager at the American Heart Association. Several recently introduced bills, she said, could help ensure better access to cardiology care across the lifespan. Some legislation Horowitz discussed include the CONNECT for Health Act of 2023 (S. 2016/HR 4189), the Black Maternal Health Momnibus Act (S. 1606/HR 3305), the Connected MOM Act (S. 712), the CARE for Moms Act (S. 2846/HR 5568), and the FAMILY Act (S. 1714/HR 3481). Working group members also recommended enacting policies that provide reimbursements based on heart health metrics, consider social determinants of health, and set requirements for representative research.
Yet, supporting cardiovascular health across the lifespan is not limited to health care settings; other areas of health policy can have a significant, positive impact on heart health. Throughout the day’s discussion, working group members highlighted the role of healthy eating and healthy food access to promote heart health. Their recommendations included expanding the Gus Schumacher Nutrition Incentive Program (GusNIP) grants to become a national fruit and vegetable incentive program within the Supplemental Nutrition Assistance Program (SNAP) program, offering healthier foods in school, distributing culturally appropriate healthy diet tips, and addressing healthy food access in food deserts and food swamps across the country. Nontraditional care tools like wellness coaching were also raised as a way to offer more holistic heart care.
“If any one of these ideas are integrated in the federal policy landscape, it would not only be a huge win for women’s heart health but women’s health as a whole,” said Kristen Batstone, Policy Manager at the National Women’s Health Network (NWHN).
Listening to the Heart Health Patient
Emphasizing the need for changes in women’s heart health, several women shared their personal experiences. Kendig shared her perspective as a caregiver, having cared for her daughter who was born with Klippel Trenaunay Webber Syndrome, a vascular disease that impacts major blood vessels with implications for heart health. Kendig’s experience as a nurse likely prevented approving interventions that would have compromised her daughter’s physical abilities and even saved her life, because she was able to access top clinicians, question advice and advocate for second opinions. Today, Kendig’s daughter is a healthy 45-year-old mother who still has to travel across the country to reach a specialty provider. “At every point in her story, there could have been a different outcome, and she could have had significant complications, or even died,” Kendig said. “I always have to ask myself, ‘what happens to people who don’t have the information and means to do what we did?’” It is imperative that women and their families have access to information, insurance coverage to support accessing appropriate care, and other support in finding and accessing specialty providers and resources that support cardiovascular health in a way that is responsive to their issue, Kendig stated. Likewise, mechanisms that incentivize care coordination and communication among all care team members can facilitate improved access to specialty care.
Teresa Wright-Johnson, a heart health patient advocate, also had parents who were her health care advocates. When Wright-Johnson was young, her parents were told she would not live past 15 years old because of a heart murmur and an aortic valve defect. Raised in a tight-knit family, “my parents did not speak to that reality,” she said. Now 51 years old, Wright-Johnson has beat the odds after going through countless doctor’s appointments, multiple open-heart surgeries, multiple aortic and pulmonary valve replacements, many cardiac procedures, a multiple sclerosis diagnosis, and a pulmonary hypertension diagnosis. Finding a way to center her own history, experience, and humanity has been integral to Wright-Johnsons’s care. “Health care is a partnership between the person with the illness—with their experience and their background—and then their providers. Until we engage in health care as a partnership between these things, we’ll always be circling without succeeding.”
For D’Souza, eight days after a healthy c-section delivery in April 2011 at age 28, she experienced a pain that she equated to “getting struck by lightning.” At the emergency room, she waited for five hours before test results showed she had experienced a SCAD, resulting in a heart attack. She was moved to the intensive care unit for several days, until doctors declared her stable and sent home with few answers and little information regarding a follow-up plan. “It was especially painful because I had been a healthy person all my life. I tried to explain to them, ‘I’m not doing anything to myself to have caused this to happen to me. It’s not my fault,’” said D’Souza. For months, doctors could not give D’Souza a clear answer, “and no one could promise me I would even see 40. Not because they had a reason, but because there wasn’t any information about this disease,” she recalls. Since her initial event, D’Souza continues regular checkups, completed a cardiac rehabilitation program, safely welcomed a second child in 2015, and joined a SCAD support group, but she is still learning to live with the grief and trauma. In August 2023, D’Souza passed out suddenly and woke up with numbness on the right side of her body. She spent the weekend in the hospital and again left with limited information, but this time she was given a new heart monitor that her care team hopes will help them better understand her heart risks. “People want you to be fine. ‘You survived, so you’re lucky,’ they say. Nothing about this feels lucky,” D’Souza said, “Even as I am grateful for so much of my life, it still sucks that there are no answers.”
Becoming Heart Aware
Reeducating women—and society—about heart health will take work from all corners the health care ecosystem, but the patient perspective is essential for enacting change. “Providers are only 50% of the puzzle. If we don’t consider the patient piece, we’ll miss the boat on making real change here,” said Kendig. Partners like the American Heart Association and WomenHeart have played and continue to play a critical role in elevating heart health in U.S. society, and part of their success has been in elevating the patient experience. When women share their heart health symptoms, we must be prepared to listen, investigate, and never give up on their care.
Given the differences of each patient story and the overall complexity of heart disease (there is no one screening test; genetic and environmental factors can impact outcomes as much as diet and health habits; a lack of research in has led to a gaps in understanding risks and outcomes; heart health is deeply connected to the rest of the body, etc.), working group members imagined the power that a national women’s heart health campaign could have in spreading awareness and improving outcomes. They agreed that something akin to the breast cancer campaign, with its iconic pink ribbons, mammography information, fundraising focus, and frequent public sharing of cancer stories, could elevate heart disease to the public health imperative that it is. Further, a campaign that centers patients and reminds women to talk about heart health often and openly, to demand better care, to stand up for themselves and “be heard in the medical setting,” as Wright-Johnson put it, could improve outcomes for women and their hearts across their health spans.
As long as heart health continues to be the number one killer of women in the United States, the stories, work, and advocacy of those included in SWHR’s Heart Health Policy Working Group are sorely needed. SWHR will continue to work alongside these groups to advance awareness and increase science-based clinical and policy guidelines to protect the heart health and related well-being of women.
Additional Heart Health Resources
- Factors Impacting Women’s Cardiovascular Health Across the Lifespan Fact Sheet, by SWHR
- Federal Policy Agenda, 2021-2022, WomenHeart
- From Errors to Solutions: Building a Research Agenda to Improve Diagnosis of Heart Disease in Women Report, by WomenHeart
- “On My Heart: Women Share Personal Journeys with Heart Disease” Webinar, co-hosted by SWHR and WomenHeart
SWHR’s Heart Health Policy Program is supported by educational sponsorship from Amgen and Novartis. SWHR maintains editorial control and independence over educational content.