This Women's Health Month, let's talk about the progress we've made, but more importantly, how far we still need to go – especially in medical research and clinical care.
As a board-certified allergy, immunology, lifestyle, and functional medicine physician, and a certified life coach, I've dedicated my career to helping people navigate complex immune conditions. And as someone living with Sjogren's Disease myself, this isn't just a professional conversation – it's deeply personal.
A History of Exclusion: The FDA Ban and Its Lingering Impact
Did you know that for nearly two decades (1977-1993), the FDA banned most women of childbearing potential from early-phase clinical trials? This decision, made with protective intentions after the thalidomide tragedy, created a massive knowledge gap we're still grappling with. Imagine developing medications where half the population isn't represented in the research – that’s exactly what happened.
While this guideline was reversed in 1993, and the NIH mandated the inclusion of women in federally funded research in 1994, progress has been slow. Women remain underrepresented in trials for everything from heart disease (the #1 killer of women!) to cancer. This gap widens further for pregnant individuals, older women, and women from marginalized communities, perpetuating healthcare disparities.
The "Textbook Problem": When "Typical" Isn't Typical for Women
Our medical textbooks, the foundation of medical education, often reflect these research gaps. "Typical" presentations of disease often mean "typical in men."
Think about heart attacks. The classic symptoms? Crushing chest pain radiating down the left arm. But women often experience them very differently: unusual fatigue, sleep disturbances, shortness of breath, indigestion, anxiety, or pain in the upper back, shoulder, or throat. My own grandmother experienced this, brushing off her symptoms for a week until a second, devastating heart attack.
This isn't just about heart attacks. Conditions like autism, ADHD (my own late diagnosis!), and Parkinson's often present differently in women, leading to delayed diagnoses or misdiagnoses.
Autoimmune Disease: A Gendered Healthcare Crisis
Autoimmune diseases, where the immune system mistakenly attacks the body's own tissues (like rheumatoid arthritis, MS, lupus, and Sjogren’s), disproportionately affect women – about 80% of patients are women! Yet, research funding doesn't reflect this impact.
These conditions are often invisible, with fluctuating symptoms that are hard to measure objectively. This leads to a "credibility gap," where women's symptoms are dismissed as anxiety, stress, or "all in their head." The average time to an autoimmune diagnosis? A staggering 4.6 years and at least five different doctors. During this time, damage can progress, and patients often hear the devastating phrase, "Your tests are normal. There's nothing wrong."
If you've been on this journey, I see you. I believe you. Your symptoms are real.
Sjogren's Disease: A Case Study in Underrepresentation
Sjogren’s, the autoimmune condition I live with, overwhelmingly affects women (9 out of 10 patients). It's not just about dry eyes and mouth; it can impact virtually every organ system, causing debilitating fatigue, joint pain, and neuropathy. Despite affecting up to 4 million Americans, Sjogren’s research is significantly underfunded, and incredibly, there isn't a single FDA-approved treatment specifically for it. Patients are treated off-label or left to manage symptoms as best they can.
My participation in the Oasiz Clinical Trial for Dazodalibep, a promising new Sjogren's medication, has highlighted both the dedication of researchers and the urgent need for more investment and inclusion of women in medical research.
Beyond Representation: Addressing Bias in Healthcare
Including more women in trials is crucial, but it's only part of the solution. We also need to address persistent biases in how healthcare professionals interpret women's health concerns. Studies show women's pain is often taken less seriously, and their physical symptoms are more readily attributed to psychological causes.
True progress requires systemic change and individual awareness. As professionals, we must examine our biases. As patients, we deserve to be heard and partnered with.
A Call to Action This Women's Health Month (and Every Month!)
- Champion Inclusive Research: Consider participating in clinical trials if eligible.
- Advocate for Women's Health Conditions: Sjogren's, lupus, fibromyalgia, endometriosis – these deserve more attention, funding, and research.
- Be an Empowered Patient: Document symptoms, ask questions, and seek second (or tenth!) opinions if you don't feel heard. Trust your body.
- Support Organizations Working for Change.
- Share Your Stories: Speaking up helps others feel less alone and highlights problems that need solving.
If you're struggling, please know support is available.
Women's health is everyone's concern. When we improve healthcare for women, we improve it for all.
What does Women's Health Month mean to you? What aspects deserve more attention? How have you advocated for yourself or others? Share your thoughts in the comments!
