THE SILENT TREATMENT
Best Health|June/July 2021
TOO OFTEN, WOMEN IN CANADA ARE DISMISSED, NEGLECTED OR MISDIAGNOSED BY THEIR HEALTHCARE PROVIDERS. A NEW ALLIANCE WANTS TO CHANGE THAT FOR GOOD.
CHRISTINA FRANGOU

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 healthcare 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 knew women experience higher 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.

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