It all started with an offer to take a tour of the Tillamook Cheese plant in Boardman with Congressman Greg Walden. I had been on a tour of the plant about 10 years ago, but as an elected county official always appreciate face time with my congressman.
My daughter Sara, who lives in Reno, Nev., was vacationing at our house and agreed to come along. Our touring group was small, and afterwards we reconvened in a small conference room to sample Tillamook’s products and have a round-table discussion.
Sara, like many of my family members, suffers from celiac disease, an autoimmune disease caused by a reaction to the gluten protein found in wheat, rye and barley, affecting approximately 1 percent of the population. As I looked at the allergen information on the packaged products, I asked Sara if she could consume anything because of her allergies. This started a conversation about food labeling and the difficulty faced by people with allergies, and celiac in particular. Sara pointed out that processed food was difficult, but you could always opt out, and the larger concern was with prescription medications.
At this point we had Greg Walden’s attention. Sara explained that typically the doctor would prescribe the medication, and when asked if it was gluten free, would refer you to your pharmacist. The pharmacist can sometimes confirm the ingredients, but more often than not refers patients to an internet search or, in rare instances, directly to the drug manufacturer.
Congressman Walden commented that Dr. Scott Gottleib might be visiting his district soon, and offered a potential follow-up conversation with him. I’ll admit that I didn’t know who Dr. Gottleib was, and later learned he is the commissioner of the U.S. Food and Drug Administration. I appreciatively accepted the opportunity.
In early August, Sara and I were invited to attend a meeting with Walden and Dr. Gottleib in Bend. My assumption was that 50 or so people would attend the meeting and it would consist of local elected public officials and medical professionals from Central Oregon. I wasn’t sure how much time we would have allotted to us, but Sara agreed to make the 7-hour drive from Reno to meet me and my wife Susan, who also has celiac disease.
The morning of the meeting, Sara and I arrived a few minutes early to our hotel conference room that was much smaller than anticipated, joining a handful of other early attendees. The few we introduced ourselves to indicated that they represented large pharmaceutical manufacturers. Shortly thereafter, Walden, Dr. Gottleib and additional staff members arrived. There were only about 12 people in the room and a round of introductions revealed representatives from Oregon Health Science University; Sara Russell, consumer advocate for a day; and a half a dozen people representing the pharmacy industry. We were given the floor for about 15 minutes, and when I say we, I really mean Sara.
Sara worked as a pharmacy tech for nine months when she was going to college, and now works in the insurance industry in Reno with a heavy emphasis on group medical coverage. She told the audience that as a well-informed consumer she had difficulties finding out if the medication prescribed was safe for her or her 7-year-old son to take. It’s not the active ingredient that’s the problem, rather the filler ingredients that make it a pill. Ingredients like starch, cellulose, Vitamin E or caramel coloring are all red flags for potential gluten sources. Everyone listened intently and understood the problem.
Dr. Gottleib indicated that the FDA has included suggested wording to specify gluten in a working draft that may be finalized soon. Sara asked if suggested wording was strong enough to ensure execution, and was quickly told by the representatives present from the industry that FDA suggestions are taken very seriously. Sara also proposed that the FDA regulate labeling consistency and placement for products advertising as gluten-free to ease frustrations many consumers experience when grocery shopping, which was well received by the FDA representatives for future consideration.
It was a great opportunity for Sara and me to advocate for the estimated 3.5 million people in this country who have celiac. I’m also certain that if Walden were not the chair of the Energy and Commerce committee for the House of Representatives, it would not have happened.
Don Russell is a Morrow County Commissioner and lives in Boardman.