Advocacy isn't as hard as you think: here's how I make a difference in people's lives by sharing my story with politicians.
Published On: Jul 11, 2019
Last Updated On: May 3, 2021
My body—like those of many people with atopic dermatitis, I suspect—is the site of a perpetual science experiment.
There are the informal investigations I conduct regularly: brewing a massive pot of bitter Chinese herbal tea, slugging it down and waiting to see what happens (spoiler: nothing).
Rubbing turmeric paste on my itchiest spots (all this does is make me smell like turmeric). Seeing whether I can drink this beer (yes), or pet that dog (no), or sleep in these hotel sheets (maybe) without getting hives.
And then there are the more formal experiments: every conventional treatment I’ve ever tried, every biopsy taken, and the one time I participated in a clinical trial for Protopic use in teens in the early 2000s.
But there is one drug I haven’t tried: dupilumab. A monoclonal antibody also known by its brand name Dupixent, dupilumab is the first eczema-specific biologic approved by the FDA.
Medical practitioners are often surprised to hear that I’m not on it—shouldn’t I, a person with lifelong severe eczema, have jumped at the chance to try a new treatment that might actually work?
I haven’t, and here’s why: three decades of living with eczema have made me in an expert in the vagaries of my own body. I know my skin well, and usually, I can coax it back from the brink of a flare and into a fragile homeostasis.
Sure, it can be bad sometimes, but it’s generally not that bad. Right now, eczema isn’t stopping me from living a full and active life. Plus, my husband and I are thinking of having a child.
New drugs can change patients’ lives for the better, but they also raise new questions. Dupilumab has not been tested in pregnant women (though a corresponding antibody has been tested in pregnant monkeys, whose baby monkeys did not experience adverse developmental affects).
Biologics can cross the placental barrier, which means that it’s possible that a fetus could be exposed to the drug in utero. There is no data on the presence of dupilumab in breast milk, and, like many drugs, dupilumab use during pregnancy is only advisable when the benefits to the patient outweigh the potential risk.
Pregnancy alone raises a host of questions for me: How will my skin change? Can I continue my same treatment? What is the likelihood that my child will have eczema, and what can I do to mitigate that risk? Adding a biologic into the mix—one I’m not sure I need—seems enormously complicated.
I wanted to discuss this with my dermatologist earlier this year, but she—fittingly—was out on maternity leave. So, I went to another doctor in her practice: a young woman my same age, newly minted from residency.
I knew what she saw when she walked in the door: my flare, my long chart, my history of non-compliance. “Have you considered dupilumab?” she asked. I felt I had to defend my choice—a choice I’d arrived at after multiple conversations with her colleague, a choice borne of my particular circumstance and philosophy, all subtleties that surely weren’t detailed my chart.
So, I launched into my really-I’m-fine-I-don’t-think-my-skin-is-bad-enough-right-now-also-what-about-kids explanation. Did she hear me? I’m not sure. Because once biologics were crossed off the list, she lectured me about my daily routine, and suggested I switch to a moisturizer with ceramides.
I had come to the appointment to discuss the details of a major life choice: to explore what having a child while having eczema might be like, to think carefully about what that next great science experiment inside my body might be.
I wasn’t there in pursuit of a new treatment, but my doctor felt she had to offer me something, thus the moisturizer conversation. The chasm between us—our perspectives, our experience, our agendas—was maddeningly vast. By the time I was able to say, “I want to discuss pregnancy,” our appointment was almost up.
The healthcare choices we make do not just unfold inside the vacuum of an exam room. They are prefaced by the lives we want to live and decided according to our deepest desires and fears. And just as our lives aren’t static, neither is science.
The questions that rankle me now (Biologics? When? For what benefit? At what cost?) will, over time, have clearer answers. There will be more studies, more data, more consumer choice. But I’m not holding out for that certainty. Right now, I’m too busy living.
Sarah Harris is the founder of Skin Stories, a weekly email newsletter that shares stories of people with chronic skin conditions living full lives. Check it out and subscribe at https://www.skinstories.us. If you’re headed to Eczema Expo, join Sarah at the #awkward and Celebrate Your Skin panels. You can follow her on Instagram @sharris31.