Thank you to the chair and the committee for the invitation to present today about the topic of women's health research.
I'm an neurologist and, as you heard, a professor of medicine and community health sciences at the University of Manitoba, where I hold the Waugh Family Chair in Multiple Sclerosis. I also serve as the director of the provincial health program for multiple sclerosis.
For the past 20 years, my clinical practice and research have focused on people living with MS, including the topic of women's health. Three-quarters of people living with MS—three-quarters of the people I care for—are women at all life stages.
Today, I will share key reasons why research related to women's health is a critical issue that must be addressed for women with MS and other chronic diseases.
First, women with MS must manage the challenges of decisions regarding family planning, pregnancy and menopause while concurrently managing a chronic disease.
Second, many knowledge gaps exist regarding women's health in the context of MS and chronic disease.
Third, existing knowledge tells us that women with MS experience important disparities related to women's health.
Allow me to elaborate on these points.
MS most often presents between the ages of 20 and 40 years. However, it can present in children in about 5% of people, and in later life. This means that women with MS are dealing with a disease at a time when they are completing their schooling, starting careers, building relationships and planning families. They must make complex decisions about stopping or changing their disease-specific therapies if they decide to have children. They must figure out how to parent or sustain relationships while potentially dealing with pain, fatigue and depression, as well as physical or cognitive impairments.
In a recent review of the world literature, we found that relatively few studies—about 350 out of more than 100,000 publications—focused on the topic of women's health in MS. Most of these studies focused on pregnancy. Very few studies addressed menopause—which is a life stage that all women experience if they are biologically female—gynecologic cancers, cancer screening or biologic effects of sex hormones.
The participants in these studies did not fully represent all women with MS. Most participants were white. Few were living with severe impairments due to their disease.
Focus groups have told us that these topics—menopause, cancer, sexual dysfunction, parenthood and pregnancy—in the context of chronic disease are the top priorities for future research.
Women with MS, like other women with physical impairments, are less likely to undergo cancer screening tests, such as mammograms or Pap tests. This is particularly true for women of lower socio-economic status.
Some of these disparities reflect the difficulty in finding health care providers and health systems equipped to deal with women with physical impairments who may not be able to stand unassisted for a mammogram or who need a lift to transfer them to an examination table. Women with MS, as a consequence, are more likely to be diagnosed because they have symptoms of breast cancer, rather than through cancer screening. They are also less likely to survive breast cancer.
We need far more research addressing women's health issues in women with MS and other chronic diseases. Women with MS deserve to know how their reproductive life stages and the related biological, sociological and social changes interact with their disease, and how best to manage these life stages and their chronic illness together. They deserve to have effective, accessible care, regardless of health status, that ensures they get equitable health outcomes. That research must be inclusive, reflecting the perspectives of women with many different characteristics, backgrounds and life experiences.
Thank you for your attention.