Health System Must Do More to Understand Heart Failure in Women, Panelists Say

It’s bad enough that too few women have been enrolled in clinical trials studying heart failure, leaving scientists and physicians with knowledge gaps on how therapies react in the female body.

It’s equally frustrating, said Martha Gulati, MD, MS, the Cedars-Sinai cardiologist and president-elect of the American Society for Preventive Cardiology, that too few clinicians understand how heart failure presents differently in women than in men, or how women’s experiences—such as pregnancy—can elevate their heart failure risk.

And most of all, it’s unacceptable that when Pamela Thomas, a heart failure patient and advocate, cried during a medical appointment, her male doctor left the room and sent his physician’s assistant in to complete the visit. Thomas later demanded to see the physician and discuss his actions.

Gulati and Thomas were among the panelists in Wednesday’s webinar, “Don’t Skip Her Beat,” which addressed gender disparities in heart failure treatment and offered advice for how women can seek the best care.

Presented by Boehringer Ingelheim & Lilly, the session also featured Birgit Beger, an attorney who is CEO of the European Heart Network, and Angela Saini, a journalist and the author of Inferior: How Science Got Women Wrong, who served as moderator.

Gulati, who is associate director of the Barbra Streisand Women’s Heart Center at Cedars-Sinai and holds the Aveda Dan Friedman Endowed Chair Women’s Cardiovascular Medicine and Research, gave an overview of the biological differences that can cause heart failure to present differently in men and women. While men are more likely to experience symptoms such as chest pain that point directly to heart disease, women’s symptoms—such as nausea—may offer less obvious links. Unfortunately, Gulati explained, this may mean that women’s complaints may be dismissed, and diagnoses of heart failure may be missed.

There are events in women’s lives—such as treatment for breast cancer—that boost heart failure risk that men may never experience, Although rates of heart failure are roughly the same for men and women, there are certain risk factors that affect women differently and may not be taken seriously, she said.

“For example, emotional stress has more effect on the heart of a woman than a heart of a man,” Gulati said. “We also know diabetes increases the risk of development of heart failure, and in women more so than a diabetic man. So, these are biological differences.…We don't know all the answers of why, but we know that they occur. And so, we should have a heightened awareness when we identify a woman at risk compared to when we identify a man at risk.”

Saini pressed Gulati on the issue of underenrollment of women in clinical trials. “In the US and in the [European Union] for a number of decades now, there have been requirements to include women in clinical trials,” she said. Why is the situation in heart failure so poor?

Gulati said despite requirements of gender diversity goals for trials that receive federal funding—or requirements that sponsors must explain why women would be excluded—companies that set out to enroll 50% men and 50% women can fall short and proceed anyway. “That's why we continue to see trials at our national meetings being presented where there's an underenrollment of women,” she explained, even though drugs and especially devices work differently between the genders.

Failing to understand how drugs metabolize differently in women can result in both suboptimal care and missed opportunities, she noted. “Simple things like a beta blocker—the plasma concentrations are actually higher in a woman compared with a man. And that means that a woman's blood pressure might drop more dramatically than we see in a man, and their heart rate response also may fall greater than in a man. So we shouldn't be surprised when a woman has more side effects to those medications,” Gulati said.

On the flip side, with some newer medications, “We have some medications that we've actually found that are more beneficial in a woman compared to a man.”

A Patient’s Experience

Thomas, a well-traveled professional who has been active all her life, said she had the same preconceived ideas about heart failure as others—that these patients “were sick all the time”—when she began experiencing the fatigue and water retention that would lead to her diagnosis. Now in her 50s, Thomas was not yet 40 when she was diagnosed, and some doctors thought she would live just 5 years.

“I was born with an enlarged heart,” she said, and she tired easily. Doctors recommended little beyond eating properly, so Thomas stayed active, even running track with her sister. “We dominated.”

But in 2008, Thomas had heaviness in her chest. She could no longer walk long distances. She began recording her symptoms in a journal. “I really thought my symptoms were life-threatening when I started to faint.”

At her first trip to her primary care physician, Thomas was told she looked normal and should perhaps eat less salt. She had to bring up her family history of congenital heart disease, the swollen feet. She was told to come back in 2 weeks if her symptoms didn’t go away.

“I drove all the way back to my office crying—I mean, hysterically crying, because I just didn't know what to do. And I felt like I was dying.” Thomas felt ashamed, but she was determined to advocate for herself. And at the next appointment she walked out with a referral to a cardiologist—and a rheumatologist, although she knew the second referral made no sense.

The cardiologist took her seriously. She was sent straight to the hospital and had a procedure to drain fluid away from her pericardium, which offered temporary relief. But the fluid returned, and Thomas has had several surgeries to manage her condition, including a surgery this year.

So, perhaps it’s no surprise that she is sometimes emotional. The male doctor who left Thomas’ appointment later admitted he couldn’t handle her tears.

“So, I would advise women to stay emotionally strong,” she said.

More Research Is Needed

Besides better balance in clinical trial enrollment, Beger said raising overall awareness about heart disease in women is a must. “Coronary heart disease and heart attacks are often seen as a man’s disease, but the awareness that women are so much touched by it—and the risks that they have are so different—so they need to be looked after,” she said.

Women lack the same quality of care across the board, Beger said—from diagnosis, to treatment, to aftercare. She and Gulati agreed that women need guideline-directed therapy, but guidelines must do more to specifically describe heart failure care for women. Doing so will require more money and more research.

And then Beger took on the issue of gaps in clinical trial enrollment. The reason so many trials are full of middle-aged White men, she said, is because they are easy to recruit. “Women are busy with jobs, childcare, or anything else,” she said. Children are also underrepresented.

The result? The medicine being practiced doesn’t fully meet the needs of 52% of the population, Beger said.

To begin with, the panelists said, women must be taken seriously.

When Saini asked for a description of differences in symptoms between men and women, Gulati said, “The biggest one, though, is women tend to have more symptoms and [have them] longer. I would say that particularly shortness of breath tends to be the complaint that we hear from women patients the most.”

Too often, Gulati said, the first complaint of shortness of breath is dismissed. “The physician will immediately say, ‘Oh, that person is deconditioned’ or attribute it to something else.’”

By contrast, she said, when a man says he’s short of breath, the reaction is typically, “Oh, it must be heart failure.”