Lita Cohen’s intention was to relax when she retired from public life. Then, in May 2000, her grandson, Jason Rosenfield, was born.
By the time he was 2 years old, he’d already had an allergic reaction to peanuts at his daycare facility in New York. It happened during a birthday party, when another child opened a package of M&M’s. Jason suddenly had difficulty breathing and developed a rash around his mouth. Fast forward six months to another incident. This time, Jason needed to be rushed to the hospital.
“He was retested at 5, and again at 10, and his numbers are down,” Cohen says. “But he’ll never be anything less than severely off-the-charts allergic.”
To do her part, Cohen, the former five-term member of the Pennsylvania House of Representatives and two-term Lower Merion Township Commissioner from Merion, began researching the peanut allergy—and she didn’t like what she saw, read or heard.
The peanut allergy phenomena remains bizarre by virtue of its sudden emergence. Only in the past decade has it truly found its way onto the public health radar. Some interventionists are looking for an artificial peanut; others are searching for a serum. Some studies are even conducted with subjects like Jason—the severely allergic—already excluded.
Cohen was part of the Philadelphia College of Osteopathic Medicine’s board of trustees, where discussion led her to C. Scott Little of PCOM’s Center for Chronic Disorders of Aging, headed by Brian Balin. An associate professor in the pathology, microbiology, immunology and forensic medicine department, Little is now the director of the Food Allergy Research Initiative, a foundation Cohen started in 2008. “The more I talk with these guys (then and now), the more I think they can do this,” Cohen says. “All I have to do is continue getting them the money.”
With her political clout, skills and experience, plus a Rolodex “to beat the band,” Cohen couldn’t be more perfect for the job. Her goal is to raise $1 million, and she’s confident she will. “I get donations in the thousands, but also in $10 and $15 amounts,” she says. “People do care.”
Thus far, Cohen has approached individuals. Next, she’ll target corporations and foundations. On a smaller scale, there are SA-FARI lion pins that stand for “Support Awareness – Food Allergy Research Initiative.”
“We hope they’ll catch on and become like the yellow Lance Armstrong bracelets or like the Stephen Colbert red bracelets,” says Cohen. “We’ve already used up the 1,000 we bought. We sell them for $10. It’s not an enormous fundraiser, but it does bring awareness, which is one of the things we’re aiming for.”
Few value peanut butter the way Lita Cohen once did in her kosher-kept home. Since her two children attended a Hebrew day school, they needed a dairy-based lunch. They didn’t like tuna fish or eggs, so that left three choices: peanut butter and jelly, peanut butter and grapes, or peanut butter and bananas.
These days, peanut allergy is the most common cause of food-related death, according to the Asthma and Allergy Foundation of America. As many as 1.5 million people are subject to a life-threatening anaphylactic reaction. Six to 8 percent of those allergic are under the age of 4, according to a 2006 National Institute of Allergy and Infectious Diseases study. The numbers are practically double that now.
Just 20-30 percent of allergic children eventually outgrow it. And still, no one really knows the exact cause. It appears to have something to do with an immature immune system—one that parents contribute to with their fetish for keeping kids “Purell clean,” Cohen says.
PCOM’s Little explains that our immune systems are designed to fight pathogens. Increasingly, though, we’re not exposed frequently enough to those pathogens. So, over time, the immune system can’t do its inherent job.
The goal of Little’s research is to identify and target key cells of the immune system, then use immune modulation to modify the response of those allergy-sensitive cells, ultimately decreasing the severity of allergic reactions following exposure to peanuts.
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Thus far, Little has worked with laboratory mice, but his research will eventually initiate preliminary experiments with isolated white blood cells from allergic humans. If his work is successful, the extent of the reaction could become comparable to a seasonal allergy or hay fever attack. “Something much milder,” says Little—like a sneeze rather than an anaphylactic reaction. “Right now, it’s just me in the lab,” he says. “To move forward, it’s going to take more money.”
Back when Jimmy Carter was president, America bought the bulk of its peanuts domestically. Now, most come from China. So why doesn’t an adult who eats—or is exposed to—those same Chinese peanuts have an allergic reaction? For one, we have developed immune systems. Perhaps we also have an established, safe history of eating peanuts.
Children like Cohen’s grandson don’t. At 10, he’s still a “regular kid,” his grandmother says. Actually, he may be extraordinary. In early October, Jason participated in his third triathlon. Next summer, he’s heading to a seven-week “peanut aware” camp in the Poconos. “I’ll still be holding my breath,” says Cohen. “Danger is always lurking.”
That’s why grandparents, parents, camp counselors and school officials need to be ready. When Cohen is with Jason, she carries a pocketbook with Benadryl tabs, a cell phone, and two adult-dose EpiPen epinephrine auto-injectors (in case the first one fails).
Cohen says she practices once a year so she won’t “freeze” if she ever has to thrust an EpiPen through the thick part of Jason’s thigh. “You’d need the EpiPen in one hand and the cell phone in the other to dial 911,” she says. “Other than that, you hope and pray. Fortunately, we’ve done a good job of not transmitting that fear into him.”
Benadryl and an EpiPen, Little says, help for less than an hour. In some cases, the treatment can only stay the effects of an anaphylactic reaction for as little as 15 minutes. Either way, there’s an emergency room trip involved.
Each year from 2004 to 2006, an average of 9,537 hospital discharges among children up to age 17 involved a diagnosis related to food allergies. In 2006, 35 percent of all ER visits for anaphylactic reactions were due to peanut allergy.
The federal Food Allergen Labeling and Consumer Protection Act requires packaged food products that contain peanuts to say so on the label. Still, maybe it was manufactured in a plant that uses the same equipment to process a peanut—or tree nut—product. “It’s a constant danger and worry,” Cohen says.
And she is the first to say that some public schools are uncooperative in their vigilance and policy. One doctor told her he believed peanut allergy was the invention of “hysterical mothers.”
As for Jason, his grammar school is “totally nut free,” Cohen says. When he started there, several students were also allergic, and the principal made the call. “Parents went in screaming, ‘What do you mean we can’t pack peanut butter and jelly for lunch?’” Cohen says. “A lot of schools have separate tables for the peanut allergy students, but that seems to make the kids feel freaky. Jason’s principal told everyone that if you come to school with peanuts—the bad stuff—you’re going to sit at the separate table.”
Over Columbus Day weekend, Cohen took Jason on a trip to Washington, D.C. Dinner was catered at a cousin’s house, but Cohen called months ahead to make sure of every last detail, including the use of clean utensils.
Even if Jason meets someone who’s just had peanuts and hasn’t washed his hands, he could have an allergic reaction. If he has a playdate or a sleepover, the hosts are alerted, and Jason brings his own snacks. When the family eats in restaurants, someone calls ahead to make sure Jason can eat there. Most restaurants are aware and accommodating.
“Today, we have avoidance and awareness,” Little concludes.
But no cure and no therapy.
“I just have to keep raising the money to help these researchers,” says Cohen. “I really think we can lick this scourge.”
To learn more about the Food Allergy Research Initiative, e-mail litacohen@comcast.net. For more information about food allergies and anaphylaxis, visit foodallergy.org.
