Research And Medical Education Are Essential To Women’s Health
May is Women’s Health Month and Mental Health Awareness Month.
May 11-15 is National Women’s Health Week, which, “aims to highlight women’s health issues and priorities and encourage women of all ages to prioritize their physical, mental, and emotional well-being”.
Health care is directly dependent on research and clinical trials.
Poor quality research results in poor quality health care. Where there is no research, there is no health care.
Women’s health care is not as good as men’s because women were rarely included in clinical trials until 1993.
The exclusion of women from clinical trials is partly because of modern science’s reductionist approach. Men are less complex and cheaper to study than women because they don’t have a menstrual cycle. As a result, almost all scientific research that informs medical care is conducted on men. This research then informs medical education, what doctors are taught in medical school. While this approach translates well into health care for men (particularly white men), the results of these studies don’t translate well for women (particularly women of color). Today the medical field still doesn’t know how well many drugs and medical devices work for women. As a result, women’s mental health suffers. Wouldn’t you be anxious and depressed if you were dismissed, gaslit, and/or neglected when you sought help for what ailed you?
Women’s mental health is directly dependent on the support and care we receive for our physical health.
As a Sjogren’s patient, scientist, and skincare practitioner, I’ve personally witnessed how a lack of research and medical care leaves women isolated, neglected, abandoned, and vulnerable to abuse and exploitation because they’re so desperate for community, support, and relief. When community, support, and relief don’t come from the healthcare industry, one of the places other than the wellness industry, that women turn to is the skincare industry. As I’ve said before, skincare is a billion dollar industry in the US where anyone can put anything in a jar and legally sell it as skin care. The result is that women often make themselves sicker with these wellness and skincare rituals.
If we truly care about women’s health, and particularly mental health, then we need to invest in objective research on women that accounts for and does not build upon the already published biases against women. For example, research on Sjogren’s disease is filled with myths and misconceptions that are now entrenched in medical education and result in less than adequate care for Sjogren’s patients. Unless we correct these myths and misconceptions at the research level, we risk them being taken as the truth and having experiments, clinical trials, and therapies designed based on these myths. Building on a mischaracterization of Sjogren’s disease moves us further away from reality instead of towards it. That’s not progress.
And remember, Sjogren’s disease is just one of many misunderstood, misdiagnosed, ignored, poorly-funded and under-researched maladies that plague women. Money and knowledge trickle down slowly to the non-male, non-white populace. The money and, therefore, the research go to those who can afford to make the most noise.
But, despite the assault on women’s health by the current administration, I was excited to receive an email from the Sjogren’s Foundation last month that read:
“Recent reductions in National Institutes of Health (NIH) research grants and indirect costs are affecting researchers across the country, including those working to understand and treat Sjögren’s disease.
While the Sjögren’s Foundation does not receive direct federal funding, our researchers do, and they’re facing difficult choices as resources tighten.
This is why it is vital that we intensify our efforts.
Over the past four years, the Foundation has expanded our research grant program by increasing award amounts, launching new Dynamic and Partner Grants, and attracting new investigators to the field. And these changes are working.
We’ve seen a considerable increase in applications, fresh ideas, and bold proposals that could change the future of Sjögren’s research.”
Given that cuts in NIH funding are driving researchers to seek funding through the Sjogren’s Foundation, we have an exciting opportunity to fund research that accurately characterizes Sjogren’s disease and puts an end to the many myths and misconceptions that plague it and prevent patients from getting care. But that opportunity depends on who is on the Foundation’s grant review committee, whether they acknowledge and counter the myths and misconceptions about Sjogren’s or perpetuate them, and what criteria the committee uses to decide which grants to fund. The Sjogren’s Foundation website describes the grant review committee as, “A committee of experts comprised of Sjögren’s experts from different research and medical specialties, as well as Foundation staff and the Foundation’s Board of Directors, will review and contribute to the decision on research grant selection.” I’ve emailed the Sjogren’s Foundation and have yet to hear back regarding who specifically comprises a “Sjogren’s expert” and what criteria they use to decide what proposals to fund.
My article for April, Sjogren’s Awareness Month, titled, ”The American College of Rheumatology, Sjogren’s Disease Experts, and Medical Educators Need To Step Up” elicited many responses from readers that highlight the need for scientists and doctors living with Sjogren’s to be included in helping shape Sjogren’s research and medical education:
“As a someone who has struggled with Sjogren's Disease for decades, I found the research and resources Dr Lobo shared invaluable. This one article is worth the cost of my subscription to the Davis Enterprise. It beats everything else I have read about Sjogren's since receiving the diagnosis.”
“Dr. Lobo gives all of us Sjogren’s patients in the greater outlying Sacramento and Placer county areas a strong advocacy voice through her insightful op-ed piece about Sjogren’s.”
“Thank you for putting into words what so many of us live with but rarely see validated in research or public discussion. The line about conditions ‘worse than death’ hit hard - because that’s the reality we’re constantly trying to explain while still expected to function like we’re fine.”
Scientists and doctors living with Sjogren’s disease, are uniquely qualified to counter the myths and misconceptions entrenched in the scientific literature and perpetuated by “Sjogren’s experts” who lack personal experience with the disease. And, as Sjogren’s disease is so misunderstood and neglected by research and medicine, who better to help Sjogren’s patients than scientists and doctors who are Sjogren’s patients themselves? So, I was honored and excited when the Sjogren’s Society of Canada invited me to present my research on “Sjogren’s Disease, Nutrition, & the Gut-Skin Connection” at their National Patient Conference on April 26. Dr. Kara Wada, an immunologist and fellow Sjogren’s patient, also presented and shared her 4R framework, Recognize, Reclaim, Rebel, Rise, for living well with Sjogren’s.
After the conference, the President, Co-chair of the Medical Advisory Board, and Member of the Board of Directors for the Sjogren’s Society of Canada, Dr. Leslie Laing, wrote to me saying, “Your clarification on how Sjögren's Disease patients are affected nutritionally was well-received and we thank you for that. To simplify biochemistry is quite a feat!“
If you’re interested in watching “Sjogren’s Disease, Nutrition, & the Gut-Skin Connection”, let me know.
