As a mom of a child with a life-threatening allergy, I am so deeply grateful for the amazing group of advocates who surround our family. To be sure, we have had some downright horrifying experiences, but most of the people in our lives are invested in understanding our food allergies. Because of their compassion, I found myself tagged numerous times on a recent article announcing the arrival of “the peanut pill” to the U.S. market. It’s sweet, but unsettling to me.
Why am I not dancing in the streets? I am keenly aware that 59 percent of people who share articles on Facebook have only read the headline. Most of these articles boast sensationalized headlines. They dance on the line of deceptive and read like they tell the whole story, but they don’t. The headlines of these articles and news stories read like a cure. Here comes a real news flash: This pill is not a cure. The content of the articles always reveals a more realistic picture of what the FDA approving. But the damage is done when headlines mislead people who support allergy families but are not their doctors.
If you are reading this line in my copy, first of all — thank you, and second, you are in the minority of social media readers. Depending on the content, only between 70–80 percent of people read the actual copy. It’s a depressing number. When publishers are most concerned about shares and interactions, the pressure placed on content creators to have the most reactionary and exciting headline is intense. The cost is often that posts disappear behind headlines. Headlines that are dangerous one-liners that leave readers with an inaccurate understanding of a topic. That is not good for any of us. On any topic.
When the topic in question is food allergies, saturating the internet with headlines that make it seem like food allergies have just been cured it is dangerous. For many allergy families, we deal with a constant barrage of skepticism about the reality of what it means to have a food allergy. Even with years of documentation and medical doctors who know our history we sometimes face individuals and professionals who define the risk differently than we do base on our medically maintained allergy plan. This idea that somehow their generalized and broad public understanding of what it is to live with an allergy is better or superior to our lived experience and guidance from physicians who have worked with our unique case. I can guarantee you there will be “experts” around the watercooler and reception desks everywhere that will go something like this: “Why don’t they just get the pill?”
In its news release, the FDA was clear that this pill is designed to “mitigate” reactions and is not a cure. They go to great lengths to state that individuals who take Palforzia, the media deemed “peanut pill,” will still have to practice avoidance of their allergen and carry an EpiPen. “Because there is no cure, allergic individuals must strictly avoid exposure to prevent severe and potentially life-threatening reactions,” said Peter Marks, M.D., Ph.D., director of the FDA’s Center for Biologics Evaluation and Research.
This pill is not really new and has been on the radar of allergy families for a long time. It’s rooted in a practice called Oral ImmunoTherapy (OIT). Its small-dosing practice typically uses peanut flour, which can help to mitigate life-threatening reactions. While the practice is successful for some, it is not for others.
The research cited by the FDA also includes some great information about those who dropped out of the pills study. Dropping out of the study doesn’t mean they decided to skip class and head down to the beach for some fun in the sun. While it can mean that something administrative stopped working, it can also mean that the child did not tolerate the treatment. Those circumstances include life-threatening and life-changing events. These studies aren’t just numbers to us. They are friends and friends of friends. The ones who met the qualifications to be in the study and participated. Because they are brave. Because the medical professionals deemed the risk manageable, and these brave families pushed forward. For some, it works. For some, it doesn’t. And for others, they didn’t even qualify to participate.
Managing risk for allergy families occurs at slightly different frequencies than non-allergy families. We are in all the same places and spaces, but more risk is ever-present for us. It’s at the grocery store, restaurants, the cafeteria, the kitchen table, the birthday party, the playdate, the hair salon, the parking lot where food gets dropped, or that sticky grocery cart. We live with a different level of risk than some of our peers. How we do it successfully is by having amazing doctors who arm us with allergy plans that keep our kids engaged in their world but mitigate their risk of exposure and life-threatening consequence. We do this based on individualized medical expertise, not broad ideas about what allergies are and how they should be managed. Not the opinions of non-medical individuals or medical individuals who have not worked directly with us. We do this by having a beautiful village around us who helps us keep an eagle eye out and listens to what our allergy action plans say we need. The pill will be great for some — and hopefully many — but not all. Know this, there is no medical cure for food allergies, yet. But there is a cure for exclusion, and it’s you. Thank you to our village.
