As APFED begins our 15th year, we caught up with APFED’s founder Beth Allen for a look back—and a look toward the future—with the woman who started it all.
Describe what it was like to get a diagnosis 15 years ago. How long did the process take? What was available at the time?
Fifteen years ago, the ability to receive a diagnosis was heavily dependent on the physician’s exposure and education around eosinophil-associated disorders (EADs). Eosinophilic esophagitis had not been coined EoE yet. It still went by EE and was often confused in paperwork as Erosive Esophagitis. Patients often bounced through many physicians seeking help. I had discussions with patients who had waited upwards of 10 to 20 years for a diagnosis and others who through persistence had ‘only’ waited 3 to 4 years. There was a paper that came out in the early to mid- 2000s that estimated 4 to 6 years as average length of time to receive a diagnosis. This number has since come down dramatically.
The information available back then was a random personal blog that one could find buried in a Google search. There was a paragraph available on a few web sites, and they cited the same information. Eosinophils in large amounts in the gut. Not much more. Everything else patient-related was speculative in nature. In 1999/2000 there were maybe 150-200 articles on EGIDs, and I printed most of them. I read them and researched the medical terminology to understand the disease state. I still have the binder with the articles.
The moment APFED was born was during a discussion with my son’s gastroenterologist. He said, “Do not look this up as there is nothing credible out there for you.” I immediately looked everything up. There were a lot of contradicting web sites and minimal information. That sentence and subsequent personal research led to the discussions with Jacque (Fanning) and Sherri (Herrick) and ultimately created APFED’s education and awareness path.
How were families able to connect in the early days without social media? What info was available online?
Early on, we created APFED online. Jacque, Sherri and I had never met in person when the organization was formalized and realized. We met after that point. We all came to know one another on a YahooGroups chat board. Facebook and similar entities were a long way off. Back then, it was long threads of parents and patients telling their stories and people who had lived similarly. They helped calm you down and talked you through the anxiety of this mystery illness. There was a heavy culture of empathy; we were all were sick and should not compare ourselves to each other. That spirit also carried into the founding of the organization.
Truly, we originally wanted to simply have a camp but no camp would take us. Conversations Jacque had went like this:
“We have a rare digestive disease and simply want to host a camp. We can cover the necessary nurses.”
“Great. We do hot dog cookouts.”
“No. None of our kids can eat hot dogs.”
“Huh? Okay. We also do ice cream socials.”
“No. Can’t do those either.”
“We do a cookout. What about chicken?”
“We don’t want the food. Just the experience of being out together and building comradery.”
“Well, you might want to check with another camp because we aren’t sure we can accommodate you.”
Everything was food-centric. From those pre-APFED conversations came the spirit of “it’s not about the food at the events but about the events themselves.” No-food birthday cakes and celebrations began to take shape in the community.
Connecting was all on the message board and by telephone. A lot of us began to schedule our trips for health care together so we could share expenses and the kids could meet others like themselves. Back then, you were lucky to be local to a physician who understood this disease.
What challenges did APFED face as a new nonprofit 15 years ago?
Financial was a big one. One comes in feeling very altruistic and that people will understand the need to develop materials and spread the word but giving was small when we started. We did a lot with the amount we had, and our first year was entirely dedicated to the first Patient Education Conference. It was a chance for like-minded people to come together and know that they were not alone and to become educated from the few physicians that had adopted our rare corner of the world.
Another challenge was gaining acceptance that this was bigger than “they” said it was. I had a physician tell me to my face, while laughing, that we were crazy to create APFED because eosinophilic disorders were THAT rare.
Our first grant enabled us to print brochures. The families involved were so dedicated that they would take those brochures to their local offices to help spread the word. That still happens even now. I remember taking my non-eos kid into an asthma/allergy office for a checkup and seeing one of our booklets on the table in the exam room. It came full circle very quickly, and I cried right there.
What are the top three improvements you have seen for our patient community over the last 15 years?
Obviously, “credible” information is now widely available. You do not have to dig to get an education on these disorders anymore. It is on Google, front and center. Physicians rely upon APFED more and more to be there for that daily support and education.
I was sitting in an office last September, and a family had just sat with the doctor who had performed a biopsy and told them their son likely had EoE. He knew my background and told them to ask me for information. I wrote down APFED.org for them, and held the mom and grandma’s hands and told them their boy would be okay. This was NOT the end of the world and fortunately there is a group out there for them.
Another improvement is access to local care! I love this. Patients should not have to travel such distances to obtain care.
And, of course, the development of potential approved therapies. I cross my fingers in the hope to see these passed ASAP!
What achievable goals can this community likely expect to see over the next 15 years?
This is what I hope for in the next 15 years:
• Treatments. Revise that to include safe, long-term treatments.
• Additional states adopting mandates for coverage of medical foods (and not just for
infants/ young children)
• The development of new, less invasive diagnostics?
• A better understanding of the root cause of the disease? Aside from the familial aspect, what is the catalyst that tips a person from fine to suddenly developing EoE/EGE?
• More research in the lower gut. I’m pretty passionate about that one. It is desperately needed.
• Lastly, transitional care programs. My heart and passion still lies in that area of pediatric/adult gastroenterology. The development of formalized programs that move a pediatric patient to the adult space without gaps.
Beth and Charlie Allen Today
Beth is now Director of Strategic Accounts for QOL Medical, a company that manufactures a sucrase enzyme replacement for patients with sucrose intolerance. She leads pediatric gastroenterology initiatives at the hospital and national levels.
Beth’s son Charlie is now 17. His eosinophilic disorders (EoE, EGE, EC) are still very up and down. He was also diagnosed with a mitochondrial disorder in 2014. He had his g-tube taken out in 2011, but is still eating a limited diet. Charlie is active in choir and lacrosse and recently started an a capella club at his high school. He still loves supporting other kids who have chronic health conditions.