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Brett Nasuti’s bravery as a boy in 2009 may now help millions of people

Brett Nasuti with his brother and sister in 2009, enjoying pizza after being treated for a milk allergy as part of a clinical trial. Courtesy photo

By Linda Chuss

It isn’t every day an 11-year-old does something that can help to dramatically improve the well-being of millions of people. Brett Nasuti of Upton did just that in 2009 by being the first U.S. subject in a drug trial. In February, that trial culminated in the FDA announcing approval of Xolair as a treatment for food allergies. The announcement also cited that nearly 6% of the U.S. population has a food allergy, and it can be fatal. Strict avoidance has been the only way to treat most food allergies, although some people outgrow them.

Brett Nasuti of Upton, 15 years after starting the food allergy drug trial. Courtesy photo

 

Nasuti recounts, “I was a miserable infant with constant rashes, and no one knew why. When I was 1, an allergist tested me: I had 16 food allergies, which is rare. It was hard to have a normal life. Sleepovers, parties, meals, everything was challenging for me and my family, who were amazingly supportive. I had to wipe down seats and silverware, make sure no one touched an allergen and then touched a safe food. At some point, I decided to not let it hold me back from doing things and just be extremely cautious.

“By the time I was 11, I had outgrown all but six of my allergies. That’s when the Xolair trial was starting. My doctors recommended me, and I joined it to desensitize me to my milk allergy. Every Friday, I went to the hospital for an injection and was given a little more milk each time, starting with the size of a sugar crystal. They kept me overnight for monitoring. I did it because I knew it could help people, and I trusted the doctors. Plus, I would have done anything to be able to drink milk and eat cheese – I really wanted pizza. That part of the trial lasted six months, and I built up to two ounces of milk. For the next two years, I had to drink a little milk daily. I’m glad I did it, because I love cheese and eat it every day, now.”

At 13, Nasuti also helped advance legislation to protect people with allergies when he joined others in Washington D.C. to lobby senators and representatives. As a result of those and other advocacy efforts, there are now signs in restaurants about allergies, better food labeling, and other related laws.

Now, 15 years after starting the drug trial, Nasuti is happy about its success and that so many people with food allergies will have the chance to overcome them. “It seems crazy to be able to just order food without thinking about the allergy issues,” he said. “I might try it again for my peanut allergy.”

Not everyone will be able to use the drug, though. He advises anyone with allergies: “Don’t be embarrassed to speak up for what you need, like asking about food preparation in a restaurant. Exercise caution, but don’t let it change who you are. And for everyone who has to accommodate those of us with food allergies, it’s much appreciated.”