Over the past few weeks I’ve been churning through all sorts of tests and appointments, mostly within the Duke system (I reserve the correct spelling of Dook for basketball hatred only). A mammogram (ladies, schedule yours!), a kidney ultrasound, a cardiac CT scan, a heart monitor install, and, in a few days, a carotid artery scan and an echocardiogram. I’ve become an e-check in pro on the dukemychart.
The last time I went to this many Duke appointments in such a short amount of time was just over 12 years ago. I was suffering from debilitating pelvic pain. I had shopped a few OB/GYNs in hopes of finding one who could answer my questions and provide relief. I visited a surgeon multiple times who offered no guarantees that going under the knife would put an end to my agony. I waited for hours on end in fluorescent waiting rooms only to be met with maybes. Doctors had a lot of theories about the source of my pain and what could be done to fix it. But I got very few clear answers and a whole lot of “we could try xyz…” It was a traumatizing experience. But one that ultimately empowered me to take my health into my own hands. A year after the surgery that confirmed endometriosis, my pain returned in full force. By that time, I was confident enough to get up and walk out of appointments that weren’t serving me. I stood up for myself when a doctor pushed an unsafe drug on me and I left the practice when she threatened me by telling me that I’d “be in pain for the rest of my life” if I didn’t take it. After being treated like a guinea pig and going through every hormone on the formulary, I had had enough and demanded answers and more holistic care. I did my own research, adopted some natural methods, and finally found a doctor who was willing to listen to me and support my health care choices in lifestyle and medicine. But even then, (and still now) clear and direct answers were few and far between in the OB/GYN world.
Oh but this time…what a different experience.
This time, I’m in the “men’s department”. Cardiac care. And boy, do they now have ALL the answers. My first visit to the cardiologist was dang near pleasant. Her explanations were clear and her plan for getting tests and baselines was straightforward. She seemed like someone I’d be friends with in another world. The nurse took a great deal of time to enter ALL of my meds into my chart, a task other departments had ignored for months. I barely got comfortable in any of my waiting room seats before I was called back. And in one case, I was out of the door before I even hit my appointment time. Every single person has been the source of the most pleasant interactions. All smiles. And I bet they ARE happy. They don’t leave patients bewildered at every turn. Their patients don’t end up with more emotional pain than they came in with. The doctors in this department don’t suggest they maaaybe this treatment miiiight work but there’s no way to know. These folks get to give people actual solutions all day long. They are solving problems, focused on quality of life, and, unlike the OB/GYN world, they have all the research (even if it is mostly on men) to back it up.
Women’s inclusion in clinical research did not become law until 1993. We only have 30 years of data on how major diseases and illnesses affect women. Before that, we know many women, especially women of color, were unwillingly and painfully subjected to “research” and procedures in the name of science. Even now, our maternal mortality rate is an embarrassment in this country. The female body continues to be relatively mysterious even to the most highly trained OB/GYNs.
Many drug companies are starting to at least acknowledge the problems with their trials even if they have yet to solve it. From Pfizer’s website: some not so fun facts:
- Less than 2% of 10,000+ clinical trials for cancer, funded by the National Institutes of Health (NIH), included enough minority participants to meet the agency’s own goals.
- Less than 5% of research for breathing diseases funded by the NIH reported including racial/ethnic minorities.
- While the medical issues from being HIV positive are usually worse among African-American women, clinical trials of a possible treatment included mostly white men.
Researchers suggest that there are a number of possible reasons why women are less likely to be enrolled or to enroll in clinical trials compared with other patient populations. These include:
- Lack of understanding of the effects of the disease in women which can lead to under-diagnosing or not referring women to a study.
- The misperception among study sponsors and investigators that it takes more time and money to recruit women.
- Fear of harm to an unborn baby if a woman becomes pregnant during the clinical trial.
- Unintentionally excluding women from participating in a clinical trial due to various study restrictions (e.g., study that excludes people with smaller body surface areas can exclude women patients).
- Family responsibilities that limit the amount of time a woman is available to participate.
Money. Time. Both are valued over health and wellness in our system. And that has ripple effects all the way down to individual patient care and well being. Being sick is traumatizing. Endless appointments and tests are anxiety producing. Not having answers only makes it worse. Having little to no research on women to help direct doctors toward an appropriate treatment plan is just inexcusable in this wealthy nation.
After so many visits to doctors in the last week, I had a traumatic dream. I arrived for some new kind of test. I stepped into the plastic machine and my arms were pinned above my head so I couldn’t move them. Then the machine started going, only it wasn’t scanning me. It moved my hair forward and was about to automatically cut bangs! BANGS! I screamed and made the tech stop everything just in the nick of time. The tech tried convincing me that this is just what it does for everyone and it’ll be fine…I should just relax and trust the machine. I woke up out of breath and in a panic. I wonder what the heart monitor will have to say about that?