A new nonprofit organization designed to help food allergy patients pay for cutting-edge treatment has been formed and is planning its first fundraising events.
Hug a Peanut Program Inc. (HAPPI) was started earlier this year by Kelly Leslie and her husband, Michael Elliott, who is the director of license services for the state Department of Motor Vehicles. The couple has two children, Maryann, 10 and Sam, 9.
Daughter Maryann is the only family member who has a peanut allergy, said Leslie.
The nonprofit aims to help families get the funding they need to be able to enroll their children in the peanut desensitization program at the New England Food Allergy Treatment Center in West Hartford.
Leslie got the idea to start the nonprofit after she enrolled her daughter in the peanut desensitization program.
“I heard stories about people who couldn’t do it because it’s expensive and insurance doesn’t cover it,” she said.
The procedure, called oral immunotherapy, exposes patients to increasing amounts of peanut protein over a six-month period until they can eat the equivalent to one to three peanuts without experiencing a negative reaction.
The program typically runs about $3,000.
While they have full medical coverage, Leslie said she paid out of pocket for the entire procedure and considers her family lucky to have the resources to do that. She started the nonprofit as a way to help others have the same access to the treatment. The idea is for each patient to pay whatever amount they can.
The treatment center is the only clinical facility outside of a major medical network or academic environment in the U.S. to offer oral immunotherapy for peanut allergies.
The center is also the only private practice nationally that is devoted exclusively to patients with peanut allergies, according to Dr. Jeffrey Factor. Factor, who models his treatments after protocols developed and used at Duke University, said his desensitization program is safe and effective.
Patients ranging from 5 years to 21 years old come for treatment from across Connecticut, Maine, Massachusetts, New York, New Jersey and Rhode Island. More than 100 patients, including Leslie’s 10-year-old daughter, Maryann, have enrolled in the center’s desensitization program since it started in November 2010.
Leslie’s daughter eats peanut flour sprinkled on her dinner daily.
Leslie said the treatment allows her daughter to sit with friends for lunch at school, attend birthday parties and try new foods. And she has stopped “interrogating restaurant workers” when the family dines out and doesn’t worry about cross contamination anymore.
Leslie said her goal for the nonprofit is to reduce anxiety for families and increase awareness about peanut allergies while raising money for treatments.
Leslie was initially nervous about her daughter participating in the treatment. She didn’t realize how important — and life-changing — the treatment was until her daughter admitted that she worried about dying from her allergies.
“When she entered the program, we were each given a questionnaire to complete,” said Leslie. “One of the questions asked on our daughter’s form was if she had a fear of dying because of her peanut allergy. She answered yes. My husband and I were not even aware she felt that way until that moment.”
“I want people with a peanut allergy to experience the same peace of mind we do,” said Leslie. “People who don’t have the allergy don’t realize how overwhelming it is.”
“Grocery shopping would take forever and reading labels felt like a part-time job,” said Leslie. “I would call companies from the store and if I heard the food was made in a manufacturing plant on the same equipment with peanuts, I didn’t buy the product.”
And often times, Leslie ran into situations where company officials didn’t know the answer about where the food was manufactured or they flat-out declined to share the information at all.
Leslie anticipates most of the money will be raised through private donors, community events and an annual golf tournament. She hopes to award the first scholarship later this year or early 2013.
Her husband helps her manage the nonprofit organization; he is organizing the golf tournament and road race fundraising events.
For more information, visit the nonprofit’s website at http://www.happi.org.
