Chana G. (names have been changed) was 28 years old when she was found by her husband on the kitchen floor, unconscious. Their newborn baby shrieked with hunger in the other room; their two-year old toddler clung helplessly to his mother’s collapsed form, too exhausted to cry after hours of waiting. By the time Hatzalah brought the young mother to the emergency room, two of Chana’s coronary arteries had collapsed and she was going into cardiac arrest.
For nearly three weeks, her family watched and prayed that she’d survive. When I spoke to her mother, nearly three years after the incident, her eyes welled up as she remembered:
“She complained of fatigue for weeks, but we thought nothing of it. I told her, ‘You just gave birth, so you’re tired…’ I thought she was being spoiled. She’s my youngest and had been a princess her entire life.”
But it wasn’t just the family that disregarded Chana’s complaints. The doctor whom she had seen only two days before her collapse had told her that the fatigue and neck pains she felt would eventually go away. No need to do anything about it.
In the ER, as doctors worked frantically to revive her, her mother was informed that Chana had had a catastrophic heart attack. She was diagnosed with the most dangerous form of heart condition, MVD — microvascular disease — for decades the number-one killer of women across the world.
Heart disease claims more women’s lives each year than all cancers combined, yet as recently as a decade ago, it was still considered a “men’s disease.” This strange phenomenon seems to have come about because of a fatal disconnect between diagnosis and death, with more than twice the number of men diagnosed with heart disease, while twice the number of women were dying of the same disease.
Between 1986 and as recently as 2017, according to the National Institute of Health, nearly twice as many women have died of coronary artery disease (CAD) as men. That disparity is particularly high in the under-50 population, where, for every 1,000 men who survive, more than 500 women do not.
“Women in almost all age groups also have higher rates of death during hospitalization for heart attack than men do,” says Dr. Elsa-Grace Giardina, MD, a professor of medicine and founder of the Center for Women’s Health at the Columbia University Medical Center in New York. “The fact is they are far less likely to survive a heart attack, whichever stage of life they are at.”
To complicate matters further, despite multiple studies in recent years showing a steady increase in diagnostic tests for women, for most of those women carried into the ER unconscious, there had been no evidence of coronary artery disease. In short, heart disease, in whatever form it comes, often seems to “creep up” on women, silent and invisible, striking suddenly, often when it’s too late. This confounding situation has baffled the medical establishment since it first began to take note in the late 1980s.
The late 1980s might sound like a long time ago, but in the world of medicine, 25 years is a decidedly short time. To give you some perspective, research on the heart has been going on for more than a century. And with the explosion of medical knowledge in the 1930s and 1940s, the heart became the most studied organ in the human body. The NIH poured tens of millions of dollars into the diagnosis and treatment of cardiac disease, and in the decades since, doctors have succeeded in bringing down death rates to a fraction of their original numbers — in men.
Starting in 1986, the American Heart Association noted an alarming trend. With each passing year, mortality rates increased for women as they decreased for men. By 2000, nearly 100,000 more women died compared to men. And between then and 2019, the news got even worse. Or as Dr. Savita Sharma, a visiting researcher at Ohio State University, put it:
“Death rates have increased in young women, especially under 55 years of age. Among those over the age of 65, women are more likely to die within the first year after diagnosis. Between 45 to 64 years of age, women are more likely than men to have heart failure within five years. Women have higher rates of angina (experience of pain caused by blocked arteries) than men. A female excess of anginal prevalence was demonstrated in a meta-analysis of data from 31 widely varied countries, including non-English speaking countries…”
This baffling state of affairs, however, did not begin in 1986. It began half a century earlier.
When the first long-term heart studies were funded in the 1940s, they were premised on the previously stated axiom that heart disease was a “men’s disease.” Studies of women’s health focused on one issue — reproductive health. That, along with the fear of including women of childbearing age in experimental drug trials and treatments, ensured that in the decades that followed, men were overwhelmingly the subjects of nearly all biomedical studies relating to the heart. Since 1977, the Food and Drug Administration (FDA) had indeed prohibited women in their childbearing years from participating in any drug or research trials. It was assumed that whatever the findings were concerning the male heart, the same results would hold true for women. The idea that there might be gender differences impacting the effectiveness — or even the relevance — of diagnostic tests or certain procedures simply did not occur to anyone.
In the late 1970s and early 1980s, some of the largest clinical trials and studies ever conducted by the NIH concerning heart disease, its risks and various treatments, included not a single woman.
Though well-intentioned, this policy proved catastrophic, because men and women are not only biologically different, but this is particularly true when it comes to the heart. The delay in addressing heart disease in women as its own distinct condition has resulted in decades of ignorance and misdiagnosis. And as doctors became ever better and faster in treating male conditions, women died in record numbers.
The coronary arteries are the fuel lines to your heart, the byways by which all blood and oxygen are pumped to your body’s central organ. Obstructive CAD, the condition tackled during the critical years of research, is when the heart’s major arteries become blocked by a slow buildup of plaque lining the walls. If some of the plaque ruptures from its lining, a blood clot immediately forms in the artery, serving essentially as a wine stopper, blocking all blood and oxygen from coming through. It is then that one feels intense chest pain. This is a heart attack.
Cardiac catheterization is the most common diagnostic procedure for these blockages. A thin, hollow tube called a catheter is inserted in an artery or vein and threaded through to the heart. The little catheter serves as a master plumber of the aortic system, allowing doctors to perform an amazing array of miracles in and around the heart — locate blockages (angiogram), measure pressure and oxygen levels (hemodynamic assessment), check the pumping function (right or left ventriculogram), extract sample tissues (biopsy), diagnose heart defects (congenital heart defects), and detect a problem in the heart valves before you know you have it.
There’s only one problem — in the majority of women, it was never the large arteries that were blocked.
The first National Heart, Lung and Blood Institute workshop examining women and the heart took place in 1986. This was the first time that researchers from several (or any) disciplines gathered to discuss the riddle of women and heart disease; to confront the dawning realization that despite futuristic technological advances in diagnostics, procedure and surgery, their knowledge of CAD in women was woefully inadequate. But with funding and the culture of research institutions deeply entrenched in certain ways of thinking and doing, it took years to change direction. And despite the NIH’s official policy change in 1986 requiring researchers to consider gender differences in biology and disease, four years later, not only was there no practical change, but the rates of mortality in women had increased substantially.
In the end, politics forced the change. In 1990, the Congressional Caucus for Women’s Health Issues forced the NIH to reexamine its record and to enforce the policy. So five decades after intensive coronary research began, the federal government finally appropriated the first $2 million to establish the Office of Research on Women’s Health at the NIH. In 1993, the FDA rewrote its 16-year-old policy. The new policy now required women of childbearing age to be included in early clinical trials, and, critically, required pharmaceutical firms to be able to detect differences in drug actions, dosages and adverse effects between the genders.
As clinical data accumulated over the following years, the differences in biology and damage to the heart became immediately obvious.
Both in size and structure, women’s and men’s hearts are different. A woman’s heart and blood vessels are smaller, the muscular walls of her heart thinner. While the risk of damage is as high for women, it occurs in a different place. Women were dying of heart disease without being diagnosed because doctors were probing the wrong arteries. And doctors were probing the wrong arteries because that’s what decades of research on men showed. And with the research came diagnostic development — EEG, MRI, stress tests, cardiac catheterization — all designed to detect and treat plaque buildup in the major arteries. Not one of these tests is capable of detecting or treating damage to the arterioles, the heart’s smallest blood vessels, in the walls and lining of the arteries that branch off and away from the heart.
By the 1990s, the riddle finally had a name — MVD, or coronary microvascular disease, the obstruction in the heart’s smallest arteries. But to make things more complicated, the damage to the “micro” arteries often does not include plaque formation at all. Rather, the walls themselves become damaged and collapse over time. As this happens, the blood flow to the heart is narrowed until it is obstructed completely. This occurs particularly in younger women.
The ‘Wrong Symptom’ Paradox
Obstructive CAD in men (or women) causes chest pain. Everyone knows that if an adult is clutching his heart, call the ambulance — he is having a heart attack.
Microvascular disease does not cause chest pain. This is because the heart’s main arteries are continuing to pump their daily supply of blood. Instead, what is happening is that the heart is dying from its outer edges. It’s like a heart attack but in slow motion, occurring over weeks or months. You can breathe, but not as well. You can work, but tiredness slowly turns into constant fatigue. And as the body’s general blood circulation slows down, the pain will occur in various places — a tinge in your neck, a spasm in your back, terrible nausea. If you are a woman in your 30s or 40s, the doctors you speak to will assume that you’re expecting. Mazel tov. If you are over age 55, you will be referred to a chiropractor. Or a psychologist. Or maybe it’s the flu.Gitty M.*, a lively mother of five in her late 30s, experienced this firsthand.
“I knew I wasn’t expecting. I kept repeating this to the doctor, but it was as if I didn’t exist. She just looked at me skeptically and told me I needed to rest more. I was probably still tired from my last delivery. You know, the one I had four years earlier…”
By the time Gitty’s symptoms were taken seriously, she was being carried into the nearest hospital, hearing the sounds of her husband’s hysterical screams as she floated in and out of consciousness.
Gitty was fortunate. Her husband was home when she collapsed, and the speed at which she arrived at the ER bought quick, life-saving treatment. Chana G. was not so lucky. In the last three years she has endured two open-heart surgeries and must take powerful medications for the rest of her life if she is to survive.
The Danger of Doubt
But it isn’t just biology. Even two decades after the first diagnosis came out, MVD still remains the most lethal form of heart disease due to a confluence of factors.
“It took decades to develop safe and usable testing and procedures that save millions of men’s lives across the world each year,” explained Dr. Giardina. “Microvascular disease is not only inherently more complex due to its location — the damage happens in the heart’s most delicate arteries; you can’t get a catheter into a blood vessel half its size — but ignorance still remains at a high. Symptoms are ignored and discounted. A woman in her 40s who has a harder time breathing is far less likely to get help, or call for help, than a man.”
And this is where that other myth comes in: that women take better care of themselves. If this is so, then perhaps you can explain the study published in January of 2019 in the European Heart Journal showing that women wait 37 minutes longer to seek treatment for a heart attack compared to men. Conducted at Triemli Hospital in Zurich, Switzerland, this study compared delays in heart attack treatment among men and women in nearly 5,000 patients. All patients experienced a serious form of heart attack called a STEMI (ST-segment elevation myocardial infarction) that required a procedure called PCI to restore blood flow to the heart. The sooner a patient receives treatment, the greater their chances of survival and avoiding permanent damage.
Study author Dr. Matthias Meyer explains that women may wait longer due to the myth that heart attacks usually occur in men and because pain in the chest and left arm are the best-known symptoms. “Women and men have a similar amount of pain during a heart attack, but the location may be different,” he said. “People with the ‘classic’ chest pain are more likely to think it’s a heart attack, and these are usual symptoms for men. Women often have back, shoulder, or even stomach pain.”
Therefore, it’s important that women know about the typical and atypical symptoms of heart attack and call 911 as soon as they experience these symptoms. “Every minute counts when you have a heart attack,” explains Dr. Meyer. “Look out for moderate to severe discomfort including pain in the chest, throat, neck, back, stomach or shoulders that lasts for more than 15 minutes. It is often accompanied by nausea, cold sweat, weakness, shortness of breath or fear.” Recognizing these symptoms and seeking immediate treatment can drastically improve both survival and outcomes.
Solutions Available: Good News and Bad
Diagnosing coronary MVD continues to be a challenge for doctors. Though research is ongoing and there are at least two potential new diagnostic projects in the works specifically for MVD, the day has not yet arrived when women and men die at the same rate. But with better education among cardiologists and among women themselves, there is no longer the sole reliance on the standard diagnostics of CAD. Doctors today supplement the EEGs and CCs with a series of more recent tests that help detect MVD via its symptoms. They’re more time consuming, but well worth it.
Early detection, early detection, early detection. It can save your life. But as important as early detection, of course, is early prevention.
Do you smoke? Stop. How much do you exercise? Probably not enough. Do you fill your grocery cart with bags of potato chips? That’s not helping. Do you have a family history of heart disease? Now’s the time to find out. Blood pressure. Diabetes. Cholesterol. If the answer is yes to any of these questions, you have a higher risk for CAD than men who have the same condition.(Remember we agreed that heart disease kills more women than all cancers combined? Well, that’s because having cancer is, in itself, a higher risk for women than for men. Simply put, the treatment for cancer causes more lasting damage to women. Ironically, today’s advanced treatment for cancer enables more women to survive cancer than the heart disease it causes.)
So early diagnosis is crucial. Be assertive if you need to. Find a doctor who takes you seriously. No, getting dinner on the table is not more important than getting to the doctor. Don’t doubt your symptoms. You can take better care of your children if you’re alive.
Millions of women live with some form of heart disease, so if you suffer from CAD or MVD, you are, unfortunately, in very good company. The condition currently accounts for more than $195 billion in medical costs, and over the next few years this amount is projected to double. As of 2008, the government had officially designated CAD a major public health challenge.
This has meant, in practical terms, far more funding and research. Over the next decade or two, our knowledge should finally outstrip our ignorance.
Until then, don’t rely on miracles. If you encounter any of the “wrong symptoms,” call for help immediately. Reduce stress and make sure you get sleep. Hey — don’t roll your eyes at me. Every sleep-deprived cardiologist agrees — sleep is really important.
You have one heart. There are no spares. Take care of it.