There have been a few news headlines recently that could bring about meaningful changes for people with food allergies, Celiac, and food sensitivities over the next few years. As a parent of a child with food allergies, I read every article about new studies, new drugs, and new treatments, eager for future developments.
So, how excited should we be?
Cautiously hopeful.
Headline: FDA Takes Steps to Improve Gluten Ingredient Disclosure in Foods
The first headline was announced last month. If it delivers on its promise, we could see more transparency and consistency in food handling and labeling, which would make our daily lives much safer and less stressful.
The U.S. Food and Drug Administration issued a Request for Information (RFI) focused on improving labeling and preventing cross-contact of gluten in packaged foods. Specifically, they are seeking input on how ingredients like rye, barley, and oats (which are often cross-contaminated) are disclosed and how failures in labeling have led to allergic reactions.
There is no policy change yet, but it’s a fist and important step!
The agency is actively seeking public input and I’m sure many of you have lots to say about the topic, so I strongly encourage you to submit a comment.
How to Submit Comments
Comments can be submitted via the Federal eRulemaking Portal to Docket No FDA-2023-P-3942 (open for 60 days).
Please ensure that all comments include Docket No. FDA-2023-P-3942. Confidential submissions should be appropriately marked.
Headline: GSK to buy food allergy drug maker RAPT in $2.2bn deal
US-based biotech firm is developing treatment for allergies to nuts, milk and eggs in children and adults
The second headline signals growing investment in food allergy treatment.
If you’re like me, when you first read about the drug, Xolair, you were filled with hope.
Here was a real, tangible way to reduce the severity of anaphylactic reactions, especially for accidental exposure. It potentially had the potential to lift the burden of constant worry off millions of shoulders. And, it meant that the medical world, and the drug companies that are so tightly woven into it, were finally paying attention to food allergies.
Hope is the thing with feathers, and while I’m never quick to medicate my child, Xolair had feathers.
Further discussions with our doctors uncovered the limitations of Xolair for my child, but it has helped thousands (85,000 prescriptions!) of others and provided some peace of mind for their families.
Xolair: A Gateway Drug
Like many imperfect but important drugs, Xolair, has opened the door for what comes next.
Xolair has real world safety and efficacy data that proves the concept of blocking IgE receptors; now researchers have more support to develop safer, easier, or more effective drugs that can stop anaphylaxis. One possibility is ozureprubart, made by the company in the headline.
Ozureprubart, known as Ozu, works similarly to Xolair by neutralizing IgE to prevent allergic reactions from escalating. But it has some key differences that have made researchers (and British pharma companies) very excited.
What meaningful improvements might ozu offer?
- Longer-acting dosing: Instead of painful intramuscular shots every 2-4 weeks, Ozu injections may be as infrequent as every 3 months. For kids with Epi-pen experiences and a fear of needles, this is huge! The need for frequent shots made Xolair an inappropriate option for my daughter because she’d had so many traumatic experiences with Epi-pens.
- Stronger IgE binding: Studies show that Ozu may bind better to the IgE receptors and provide more protection (and less worry!). One of my biggest hesitations with Xolair was its lack of reliable efficacy for all allergens at all doses of ingestions. Stronger binding could make a big difference.
- More Candidates: Kids who have very high IgE levels or higher body weight thresholds that might not have been a good fit for Xolair, might be good candidates for Ozu. Fingers crossed that this is the case!
It’s still in Phase II clinical trials, so public access is still admittedly years off, but the data is very promising. I’m hopeful that by the time my daughter heads off to college, a drug like Ozu might be proven, approved, and appropriate for her.
She’s hoping for a pill instead of an injection, so I’m putting that out there to the universe!
Managing Emotions
Hope and optimism are part of mental health.
And the possibility of a medication that could block anaphylactic reactions would be life changing emotionally.
As my daughter gets deeper into her tween years, her world has expanded. She spends more and more time away from home, her safe space. Yes, we’ve found ways to manage meals, and travel, and anxiety (for both of us:); we take calculated risks every day to live a full life. We have wonderful friends and family who support us and all our endeavors to keep our daughter safe in this world (thank you!!!).
But the worry is always there and the mental load is never light.
And as she matures, our tween is becoming more and more aware of the discrepancies between herself and her peers.
The restaurants she hasn’t visited with the amazing food she hasn’t tried.
Invitations that don’t come.
The celebratory treats she must decline.
Yes, I’m an amazing cook and our family prefers my homemade GF cupcakes to any other, so we have birthday treats covered. But it’s the sense of belonging and shared experiences that she wants (don’t we all?), and I know that will only increase as we enter the teenage years.
Onward
I’m hopeful, but still skeptical. Xolair didn’t cure food allergies, and Ozu won’t either, but I’m excited because the headlines signal investment, attention, and momentum.
Maybe one day anaphylaxis will be entirely preventable. A girl can dream:)
In the meantime, we’ll push for safer food handling and more transparent labeling. We’ll keep refilling and checking the expiration dates on our Auvi-Q’s and Epi-pens. I’ll keep reading headlines, and we will keep supporting each other.
With compassion and hope for your food allergy journey,
Colleen
References:
www.theguardian.com/business/2026/jan/20/gsk-buy-food-allergy-drug-maker-rapt-us-biotech?
acaai.org/resource/what-should-i-know-about-xolair-for-food-allergies
www.foodallergy.org
Want to to read more about Life with Food Allergies? Check out my other articles about travel, summer camp, and handling the mental load of life with food allergies.
- International Travel with Food Allergies
- Summer Camp with Food Allergies
- Managing the Mental Load of Food Allergies
