Too often, women in Canada are dismissed, neglected or misdiagnosed by their health care providers. A new alliance wants to change that for good.
Three years ago, Sharlene Rutherford, president and CEO of the Alberta Women’s Health Foundation, watched her mom with worry. Her mother was struggling with pain, heart irregularities and anxiety—things that would come up out of the blue. During a doctor’s visit, her mother gave a rundown of what she was going through. “He looked at her, pointed to his head and said, ‘I think it’s all up here,’” Rutherford recalls. But the family knew he was wrong. They pushed for more testing. And blood tests showed her mom was suffering from metal poisoning.
The clue had been in her medical records all along. The problem was in her hip, where a joint replacement device implanted more than a decade earlier was wearing down, releasing cobalt into her bloodstream. It’s a severe and well-known complication from a kind of metal-on-metal hip implant.
“This took way longer than it should have [to figure out],” says Rutherford. Her mother underwent a hip replacement two years ago to change the faulty device, but she’s still recovering.
Her mother’s story is one example of a problem Rutherford hears about frequently in her work: a woman dismissed by health-care providers only to suffer lasting harm.
She wants a revolution in the way women’s health is valued, researched and funded in Canada. She wants the focus extended beyond what’s known as bikini medicine—breasts and reproduction—and more attention placed on improving a woman’s overall health across her lifespan.
“If we look at my mom as an example [of why we need change], there was the patriarchal attitude toward her, the fact there was not much research done on how that hip replacement would impact women and her own lack of a voice to [question] her doctor,” Rutherford says.
In January 2021, Rutherford—along with Jennifer Bernard, president and CEO of Women’s College Hospital Foundation in Toronto, and Genesa Greening, president and CEO of BC Women’s Health Foundation—launched Women’s Health Collective Canada (WHCC), the first alliance of women’s health foundations in the country. Their goal is to eliminate inequities by raising awareness about the specific health needs of women throughout their lives and increasing the fundraising dollars directed specifically to women’s health and research.
“Women can lead corporations and fly fighter jets, but they continue to be misdiagnosed, neglected, dismissed as complainers or told their symptoms are all in their heads,” Rutherford says. “We’re punching through glass ceilings everywhere, but the fact of the matter is there’s still a glass wall through which women are not being heard.”
If you assess women’s health based on longevity alone, women in Canada are doing great—life expectancy at birth for a woman in Canada today is 84 years compared with 80 for men. But being alive isn’t the same thing as thriving. Women struggle with conditions like endometriosis, thyroid disease and heart disease, which dramatically affect their quality of life. Yet, historically, women’s health has been underfunded and underappreciated. Outside reproduction, women and men are often lumped together in health research. This harms women of all ages.
“Who gets funded, what gets funded, who gets included and who makes the decisions—it’s still predominantly men,” says Greening. “And that is showing up in women’s health outcomes.”
As part of its launch, the WHCC surveyed Canadian adults about their knowledge of women’s health. They found that women and men underestimate many health problems endured by women. Only one in 10 respondents knew that women have adverse reactions from prescription medications more often than men do. Even fewer knew that as many as one-third of women suffer from sexual dysfunction. Only about 20 percent of respondents believe women experience lower rates of heart disease than men, despite ongoing and well-publicized campaigns to raise awareness about this condition in women—it’s our number one killer.
Organizers of the WHCC want to raise funds for research into women’s health—much like the Children’s Miracle Network does for kids, says Rutherford. The WHCC has not identified specific research projects but wants to increase the overall dollars put toward women’s health in Canada. They also want data collected and analyzed by sex in broader research programs.
The WHCC is being driven by a new urgency, as the pandemic takes a heavy toll on women both at home and on the front lines. “Research studies on previous epidemics and pandemics have shown that women are disproportionately affected, and we know that when women are unhealthy, our economy and communities both suffer,” says Greening.
Rutherford and her colleagues at the WHCC have set their sights on addressing the gender gaps in health in Canada. Here’s a look at the enormous task ahead.
The Gap: Clinical Trials and Research
For decades, scientists excluded women from clinical trials because they believed male subjects were better for research. Even female animals and female cell lines were disproportionately unused. Most men don’t have the hormonal fluctuations that accompany menstrual cycles. Scientists worried female hormones would distort the results, making their findings less applicable for humans in the real world. “[Using only men] is a simpler model to work with if you’re looking at a basic science perspective,” says Sandra Davidge, executive director of the Women and Children’s Health Research Institute at the University of Alberta, where she was a Canada Research Chair in maternal and perinatal cardiovascular health for many years.
Making matters worse, in 1977, the Food and Drug Administration in the United States recommended that women of child-bearing potential be excluded from early-stage drug trials. The policy reflected concerns about unknown drug effects on pregnant women and their fetuses—a valid concern, given the thousands of babies born with limb deformities after their mothers received the sedative thalidomide. But this meant women were left out of trials of pharmaceutical drugs, even if women relied on those drugs to manage medical issues. It wasn’t until 1993—two years after the first woman was appointed director of the National Institutes of Health in the U.S.—that Congress passed a law requiring the inclusion of women and minorities in clinical research.
But these long-standing policies led to drugs being widely used despite little knowledge about their effects on women. Many of these products are still used today. Greening, of BC Women’s Health Foundation, says the under-representation of women in clinical trials may explain why women experience 75 percent of adverse drug reactions in Canada. “We live with a legacy that there are therapies on the market and there are clinical approaches to care that were never really tested on women,” she says.
Biological sex can affect the way a body responds to a drug. For one, women tend to have a higher percentage of body fat, so some drugs can linger longer in the body. Enzymes in the liver affect the way drugs are metabolized. Hormones alter our response to drugs. And gender matters too: Women are prescribed more medications than men, often inappropriately. A 2016 study published in Age and Ageing found that one in three women in British Columbia over 65 received inappropriate prescription medications compared to one in four men.
This has real-life consequences. Take the case of Ambien, first approved in the U.S. in 1992. Twenty-one years later, however, the U.S. Food and Drug Administration called on the drug’s manufacturers to lower the recommended doses of this widely used sleeping medication for women, after a series of clinical trials and driving simulation studies showed that women struggled with alertness after waking up. Today, the manufacturer has set one dose for women and another for men.
The experience with Ambien demonstrates that “if you don’t look, you won’t see the issue,” says Paula Rochon, a geriatrician and health services researcher, and the Retired Teachers of Ontario chair in geriatric medicine at the University of Toronto. When researchers collect data on sex and ask questions about sex and gender in their investigations, they can pick up different responses from men and women. “Then, you can do things differently by tailoring therapies or practices to those differences,” Rochon says.
She and other experts in women’s health want health data to be collected and analyzed separately for men and women, in what’s known as sex-disaggregated data. The COVID-19 vaccines are a current example of why this kind of data is important. It’s unclear as yet whether women face significantly higher risks of blood clots from vaccines than men do. Without collecting the data, that question will never be answered.
The Gap: Funding for Women’s Health Research
Only seven percent of the Canadian Institutes of Health Research New Investigator Awards were for women’s health researchers, according to a 2020 study in B.C. Women’s health researchers received less overall funding and their grants were funded for a shorter duration. Nationally, only 1.2 percent of Canada’s research chairs are in women’s health.
Women’s health funding addresses conditions like endometriosis, urinary incontinence and menopausal discomfort—which dramatically affect a woman’s quality of life but are not life-threatening. That said, these conditions lead to mental health issues like severe depression, which do lead to deaths. “Quality of life is so critically important and yet completely underfunded,” Davidge says.
About one million people in Canada are affected by endometriosis, according to estimates from EndoAct Canada, an independent collaboration of patients, clinicians and researchers. But endometriosis-related research projects received only $ 7.3 million in funding from the Canadian Institutes of Health Research over the past two decades—which works out to about $ 7.30 per person with this condition. Meanwhile, women are struggling with the painful consequences of the illness and are often unable to reach health-care providers who can help. According to a study published in 2020 in the Journal of Obstetrics and Gynaecology Canada, it took 5.4 years, on average, for a woman to receive a diagnosis of endometriosis in this country. And when they are diagnosed, they end up waiting for specialist care. EndoAct Canada estimates that women wait somewhere between three and nine months for an initial appointment at a specialized endometriosis centre. After that, they wait another year for surgery or pain care, depending on where they live.
Heart disease too is under-researched, underdiagnosed, undersupported and undertreated, even though it kills more Canadian women than any other condition. In recent years, science has shown that women often present with different symptoms than men do when they’re having a heart attack, and they can experience different types of heart attacks. Women, especially those in their 40s and 50s, are far more likely to have a spontaneous coronary artery dissection, which is a tear in a blood vessel in the heart. Women account for more than 90 percent of these cases. Post-menopausal women, on the other hand, make up about 90 percent of cases of takotsubo cardiomyopathy, known as broken heart syndrome. “The point is that heart disease is more complicated in women than in men, and we haven’t recognized that,” says Sharon Mulvagh, a cardiologist and professor of medicine at Dalhousie University.
She attributes the lag in women’s heart research, in part, to a lack of female physicians and researchers in the field. Only about 22 percent of cardiologists in Canada today are women, even though women have been at parity in medical schools for more than two decades in Canada, she says. In cardiology and in medicine more broadly, women are less likely to be in leadership roles, including working as primary investigators on major studies. “This contributes to the lack of awareness of cardiovascular health and disease issues in women,” Mulvagh says. “As the saying goes, if you’re not at the table, then you’re on the menu.”
Evidence has emerged over the past year that the COVID-19 pandemic is disproportionately harming female researchers. In an analysis published in March 2021 by the National Academies of Sciences, Engineering and Medicine, women in academic STEM positions said the pandemic has negatively affected their mental well-being, productivity, work-life boundaries and networking. Women published fewer papers and received fewer citations of their work between March and December 2020. This could affect their job stability and ability to attract funding—and, ultimately, the state of women’s health research.
The Gap: Quality of Life in Older Age
Five years from now, more than one-fifth of the population of Canada will be 65 years and older. The majority will be women. They will increasingly outnumber men as they age. By the time they reach 100, they will outnumber men four to one.
The pandemic unmasked systemic problems in the way elders are treated in Canada. Reports from multiple provinces revealed chronic neglect and underfunding in long-term care and a lack of support available for those at home. Older women bore the effects disproportionately. Most deaths from COVID-19 have been in people 80 years and older, with more women dying than men, according to the federal government’s summary of COVID-19 cases.
But older women have been neglected when it comes to health funding and research, Rochon, the geriatrician, says. When most people think about women’s health, they focus on younger women, particularly those in the reproductive years. “We need to recognize that older women are a very big group in Canada, and there are important differences between older women and men that impact women’s health,” Rochon says.
Older women are more likely to live alone in the community and be widowed, she explains. At the same time, they make up the majority of long-term-care residents, and many of them have dementia. They’re also more likely to have conditions like urinary tract infections and arthritis. And yet they’re often grouped in with men in studies of older adults.
Rochon wants researchers to collect and analyze data by sex, as well as age. When they fail to do so, or can’t because of a lack of data, they lose the opportunity to pick up patterns that could lead to better, more individualized treatments for both women and men, she says. “[And when we can’t] tailor our therapy accordingly, it can lead to things like heart disease being missed and not treated appropriately, or women getting drug doses that are too high for them and having side effects.”
The Gap: Social Determinants of Health
Gender doesn’t act in isolation. It intersects with identity, race, rurality, social supports, housing, income, education, environment, ability, sexual diversity and social connections. “When there’s even just one of these additional factors, like a woman living in a rural area, her health issues are not just doubled—they’re catapulted,” says Lori Brotto, executive director of the Women’s Health Research Institute and a professor in the department of obstetrics and gynecology at the University of British Columbia.
The Project for an Ontario Women’s Health Evidence-Based Report (or POWER), one of the largest Canadian studies to explore gender and social determinants of health, found women were more likely to live in lower-income households than men. They headed 85 percent of single-parent households, which have lower incomes than those headed by men. Lower-income adults were more than three times more likely to to have fair or poor health, and three to five times more likely to report fair or poor mental health. They were two and a half times more likely to report that they couldn’t carry out activities because of pain or discomfort, and twice as likely to report limitations in the activities of daily living.
We need research to look more closely at intersectionalities, Greening says. The majority of people living in poverty in Canada are women and girls. Racialized women, especially, face high levels of poverty: One in five racialized families lives in poverty, as does one in four Indigenous people. That compares to one in 20 non-racialized families. Fifteen percent of people with disabilities live in poverty—nearly two-thirds of whom are women. Poverty, race and other factors like education affect access to good health care, Greening says. “All of these things play into understanding how women navigate the health-care system and how the system interacts with them.”
The Gap: COVID-19 May Make Things Worse for Women
The pandemic has had a devastating toll on many women. In Canada, they took on the bulk of unpaid care. They were more likely to live in long-term-care homes and more likely to work in them. They were more likely to be laid off or have their hours cut, especially if they earned low wages. In a survey from BC Women’s Health Foundation, women reported higher rates of depression and anxiety during the pandemic. They claimed 2.4 times more prescription-related mental health needs than men from April to December 2020. Their housing and food insecurity shot up. They said, in greater numbers than men, that they could not cope. “Across the board, it didn’t matter which variable we were looking at: Women bore the brunt of the unintended consequences of COVID,” says Brotto.
It’s unclear what will happen in the year ahead. But this much is certain: Right now, the pandemic has reversed gains made in women’s health. And that is a matter of life and death.
“We know how absolutely essential women’s health is to the health of our community and our economy,” says Greening. “[We have to] advocate that women’s health is prioritized as a response to COVID. This is the time for the conversation.”