I am Professor of Psychology at Keene State College in NH, USA and a parent of a child with diagnosed Celiac Disease. I am writing both as a parent and as a professional who has been working with a gastroenterologist, Dr. Daniel Rath, Director of GI at Dartmouth Clinic/Keene in discussion of issues related to Celiac Disease. I have had several recent experiences in which I have purchased medicines (e.g., aspirin or tylenol subsititute) where it has taken several days to learn about gluten content of the medicines. The information is extremely difficult to obtain, involving first calling the number on the label, contacting a distributor (e.g., for generic distiributors who are only available during work hours), who in turn contact pill makers, who in turn take days (if ever) to return calls with correct information. The contact people are often not knowledgeable about basics (e.g., what might be in gelatinous starch). In one case, it took 4 days to obtain information, in the second case I have not received information after 5 days of waiting). Please understand that if my child has a fever, and I am unable to find out the gluten content of something as basic as aspirin or tylenol, then I have to decide between delaying treatment of her fever or possibly making her sick. What is even more frustrating is that this information is not available to pharmacists at where these drugs are sold (e.g., Shaw's Supermarkets, Supervalu, Ostco, local pharmacies) nor available on the label or on the web. Also, most individuals with Celiac are not aware that medicines often contain gluten. Customer Service at pill distributors know little about gluten and tend not even to know who the pill manufacturers are...at least not without considerable research. Most people with Celiac are not aware of these problems, do not have the research skills to find answers, and distributors and pill makers are well aware that they are poisoning tens of thousands of patients.
Last week both the President and the Provost of our College announced that they were leaving, one to be President of a university in Philadelphia, the other to be Chancellor at another in Washington State. Quite a lot for a small state college to hear in one week and quite a lot of chatter about “what’s gonna happen?” There have even been more than a fair share of “Al Haig…who’s in charge?” jokes and general confusion about who’s making decisions around here.
Lots of folks have been asking me “what’s going on? Why did the President and Provost take off? Who’s taking over those positions? Will things fall apart?”
The funny part is that of course things are not falling apart. And if you walked our campus today, you would see students walking to class, Professors teaching and meeting with students in their offices, lacrosse players heading to the sports fields for a scheduled match. In truth, everyone knows how to do their jobs despite a kind of power vacuum at the top. Admissions staff work on admissions, Campus safety officers patrol the campus, lab assistants prepare labs, and college life continues.
When asked by local press about my thoughts about our President and Provost I had positive things to say. One working hard to support changes in college curriculum and help bring positive attention to our campus from across the country, the other taking an active role to integrate new technologies and teaching and research. All good!
There is something else, though, that should be said. And here is where “personal” becomes “political.” And that is that our departing President and Provost were struggling to maintain high standards in a state that has shown little interest in supporting higher education. The NH legislature has made draconian cutbacks to its colleges and universities…nearly 45% which is by far the largest slashing of higher education than any other state in the country. Put simply, NH ranks last in the United States in supporting public college education. We are the worst.
In truth, I love this College and our staff and faculty and students. We do a lot with what we’ve got, and I admire my colleagues who work hard to provide excellent service to our students. But let’s be honest, the continued assault by the state must have exhausted these fine folks. Their jobs must have become a bit depressing.
And in the end, the people who are hurt the most are our students. The kids we care about who are forced to pay higher and higher tuition and take on the largest debt of any students in any state because of the lack of support of our citizenry. I know my friends and colleagues here at the College will keep our noses to the grind stone, continue to teach and bring in research funds to pay our students to collaborate in our studies so that they can publish and move on to do great things themselves. But this is wearing thin and it’s time for those of us in the trenches to speak up so that the college kids we care so much about have a running chance in a tough world.
I recently talked about a frustrating experience in trying to find out whether chewable aspirin I purchased contained gluten. The label said it contained "starch" but did not specifiy whether it was "wheat" or "corn" starch, a critical difference for those with diagnosed Celiac Disease (about 1 percent prevalence according to the FDA). I bounced from customer service to company pharmacists to pill distributors to pill maker across several days...provided lot numbers, waited for call backs, and finally got the answer from a guy named Matthew at Perrigo (named by Fortune Magazine as one of the top 100 growing companies). Sadly, Matthew and I played phone tag since their offices close at 5pm EST in the U.S. but eventually he was able to look it up based on the lot numbers on the bottle.
My question for Matthew (and his supervisor): Why not make the information on Matthew's screen available to everyone (or at least to pharmacists at the supermarkets and pharmacies where the pills are sold)? The supervisor (who was very cordial) talked about various problems in labeling, for example, finding space on already crowded labels, revenue systems for access to information, gradual movement toward changes in labeling coming from the FDA.
But the answer seems simple to me. If the pill maker "knows" the answer (it either has gluten in the pills or doesn't) why not make that information freely available...either on the web or on the label?
I've sent a message to the FDA asking for clarification on their rules and I'll be sure to post any relevant information on my blog.