I took my niece to a soul food restaurant in Harlem one day. It was there that I realized that growing up in Flatbush can sometimes limit your taste buds to only Caribbean foods. I suggested she order the collard greens. She made a face. “That’s gross!”
I threw a look at her as if she’d said a curse word on a pulpit. Pure blasphemy! Now, my niece can be very picky, but shouldn’t we all be particular about what goes into our bodies?
I talk to her about trying new things that she may not know. She says: “What if it doesn’t agree with me?” I assure her that while that is a possibility, collard greens have been tried and true by generations of Southern folk, and most people don’t have any issues with it.
In fact, many restaurants recognized that collard greens were so effective in calming hunger that they added it to their menus. She still side-eyes the plate. It’s an unknown to her, filled with unforeseen possibilities.
I point to the Food Inspection Service’s “A” on the door. If the restaurant has gotten this far, those greens are guaranteed some level of safety. Finally, she takes a bite. Her jaw moves slowly with nervousness, and there are a billion ways this dietary excursion could go wrong. She makes a face but swallows. A few minutes later she’s scraping my plate like it was her idea to order it.
So, I think I made it obvious that the story (which is completely true) is meant to be an extended metaphor for clinical trials. For many of us, the word “trial” itself is scary. They may as well call it clinical “not-all-the-way-sure-if-this-works” because that’s what it feels like.
There’s room for error. That’s definitely one way to see it; no one really wants to feel like they purposely put an unknown into their body that harms more than helps. I’m also still aware of our history with research doctors, as a woman and person of color.
From the Tuskegee experiments to the stolen and harvested cells of Henrietta Lacks, we can’t help but side-eye the clipboard when our doctor suggests a clinical trial. However, trial doesn’t mean error.
When my rheumatologist suggested we consider a medication in the clinical trial stage, I had my concerns. “Is it safe?” A medication can’t reach the clinical trial stage if it’s considered unsafe. No company wants the publicity of people dropping like flies after trying one of their new products. I asked her about babies (not that I want them now) and if the therapy could mess me up with that later. She showed me a chart that explained how long it takes for the medication to leave my system completely, allowing me to be free to do all the babymaking I want.
Clinical trials come with a whole lot of fine print, and they try to give you as much information as possible, so you know exactly what you’re getting yourself into.
I chose to take part in the clinical trial, not because I was completely out of options (although I didn’t LOVE the other one), but because there’s a greater purpose to them. There’s no other way to find something new that can work without someone giving them a try. I’m tired of steroids and blanket therapies which were not made for lupus, and I’m fine with the risk if I know the benefits could be so much greater.
Rather than focus on the errors that could happen, I locked in on the hope of a new medication to manage my disease. Ultimately, the therapy I was on got approved, and, yes, I’m on it now. I feel like I’ve contributed to others living with the disease, especially when I know that there’s a shortage of people of color signing up.
This may not be your thing; you may not want to try something that still in the works and new. No judgment! This is just me putting the plate in front of you. Everyone keeps saying lupus seems curable (I pray it is), so it means a lot to me to be a part of helping scientists understand this illness.