Asperger's Conversations

Time (again) to Give: NH Special Olympics Penguin Plunge!

With controversy swirling over opening of medical pot dispensaries just across our New Hampshire border in neighboring Vermont I'm wondering how this works... Many have docs in both states (I for one do). What happens when one's VT doc prescribes medical pot (say for Crohn's Disease or chemo-related nausea) but the patient lives a mile away in NH? Does the patient have to "take his meds" in VT each day, then drive home? How does this work?

Insight for the Day: I'm different than my teenager

For the past couple of days I've been hunkered down waiting for "Superstorm" Sandy to blow by.  My daughter's high school and my college have both been closed so we've had some time to hang out together.  For lunch, Annika put together sliced apples and a dipping sauce of Almond Peanut Butter with honey mixed in.  And while we chatted and munched away, my kid would occationally glance at her phone and text (still amazes me to watch her thumbs fly).  In the middle of one of her texts I started to say something, to which she promptly "shusshed" me (without looking up from her phone).  I was a bit taken aback and then had the following insight:  From her perspective, my talking while she was texting was a rude act in which I interrupted her "conversation" with another person.  From my perspective, her "text conversation" was of less importance than our "face-to-face" conversation.  I shared my insight with her (when she completed her text conversation) to which she responded: "Yeah, you interrupted my conversation."  I replied with a "big view" comment: "You don't distinguish between your real and virtual reality."
 To which she replied: "Duh."

My kid and social awareness

As I ponder the anti-intellectual, anti-education, anti-science rhetoric of the national political campaign, I've been awash with pride over my 16 year old daughter as she completes the 26 mile plus Megatransect (a mountain marathon in PA).  In many ways she's a typical kid, clinging to her iPhone, Facebooking, consuming too much caffeine, dissing school, but in other ways so extraordinary....

After coming back from a "Big Brothers/Big Sisters" event at the local College campus she remarked about the difficult lives of some of the kids that she's been helping to mentor.  Off handedly she said something like "Kids are so trapped in their iPhone bubbles that they have no idea of the problems of others."  When I shared her words with the students in my senior Psychology seminar at the College they agreed, one saying "It's true, it's like we're afraid to stray outside of our Facebook circle."  

Yet my students are bright caring people.  They are interested in the books we read and the work they are doing and, I think, yearn for more.  But in a world that is pounding them with economic and social pressures it's not so easy to "break on through."  Their timidity in speaking out is frustrating to a person like me who comes from a different world and a different time.  But I get that they live in a world of conflicting consequences: Rewarded for the avoidant ways in which  they lead their lives currently, but vaguely aware of the painful consequences that await them.

As for my own kid, with a bad cold today she will finish her mountain marathon, come home and bug me about leaving my cell charger plugged in (wasting electricity), ask me if I remembered to pick the last of the tomatoes before the first frost, and probably upload a couple more songs from iTunes (on my credit card).  I couldn't be more proud.

 

I'm saddened that Ed Gaughran is no longer with us

The line of cars parked for Eddie's memorial gathering in Larchmont, NY today seemed to go on forever.  Friends and loved ones gathered in support of his wife, Phyllis, and to tell stories, sing songs (of peace of course) and just talk about a great man who so many loved.  Ed was a great psychologist and teacher who touched the lives of many (me included).  He bought me my first beer (I think I was 15), was the rare "grown-up" who really listend (not just to me but all the kids around him) and cared. Raised Catholic, married to a Jewish woman, Eddie had little interest in organized Religon...instead, he asked lots of questions and taught so many of his to question our assumptions and always, always work for Peace on the planet.  

I'm grateful that I knew Eddie, got to spend time with him both as a kid and adult, played, hung out, and learned so much from knowing him.  I'm so glad I was able to be there today and that my daughter, Annika, was able to hear from all those people who loved him too.  Here's the obit that I picked up online tonight:

Edward Gaughran

Obituary Gaughran, Edward Died Aug. 30 2012 after a brief illness, preceded by years of beating the odds. He was 85 years old. Beloved husband of Phyllis, father of Lisa and Laurie, grandfather of Althea, Adelaide and Silas, father-in-law of Brooks and Nick. Cherished uncle to his nieces and nephews. Trusted friend. Preceded by dear brother Bern. Attended Bklyn Tech (1943), U. New Mexico (1949), NYU Ph.D. Clinical Psychology (1960), Former teaching and training faculty NYU and Westchester psychoanalytic institutes. Veteran US Navy and lifetime opponent of war. Eddy was a man of deep thought and big heart. A gifted psychoanalyst, committed Democrat, honest and gentle human being. He was unflinchingly himself, and in so being was greatly loved. Gathering of remembrance at the family home Sun. Sept 9, noon. Donations Barack Obama campaign.

 

Keene Flood 2012: Lessons Learned about Dissemination of Information?

Another big flood here in Keene, NH.  With nearly all roads to the north washed out, friends from South Acworth had to camp out in my Condo in town (and may have to stay tonight as well).  A block from my house roads are under water:

The chatter in town this morning is how reminiscent today's flood is to the disastrous one we had in 2005 where several died (to the north in Alstead).  It was a marker day for those of us in the Keene area as we struggled to find out just what was happening.  And, much to our surprise, it was not easy to find out.  Local media (with the exception of a local radio station) and NH television were surprisingly slow to report and it was nearly impossible to get reporters out to stranded towns.

I remember getting a call from Jon Udell who lived up the street and was equally frustrated about difficulties getting information.  But Jon decided to take matters in to his own hands and taped a video camera to his bicycle, recording and posting scenes of flooding in Keene.  I followed by posting pics, a podcast, and information as it came to be via phone from outlying towns.

It was a bit of a marker event because it shed light on the limitations of traditional media and the contributions that could be made by citizens via social media (mostly blogging back then).  Since then, traditional media, including NH public radio, NH based TV, and local print media have adapted to a great extent, and we continue to move toward a greater collaboration of social and traditional media in getting the news out to people. (note: But if anyone can tell me if there's any way to get up to South Acworth from Keene I'm still getting conflicting information from town fire departments and local media outlets!)

 

Testimony/Comments on Gluten in Medications for FDA (Continued)

It's not easy to find your way through the gov documents to locate public submissions to the FDA regarding public commentary on gluten in medications.  After a bit of whining (message to "person in charge" of this particular "docket") I was directed through the maze of links to get there.  To view all comments click HERE.

Here is one of 46 comments submitted (I posted mine earlier).  This one by Ian Taylor, MD on behalf of the American Gastroenterological Association.  The AGA strongly supports clear labeling of gluten and that information be available to pharmacists and others about gluten in medications:

March 20, 2012

Margaret Hamburg, M.D. FDA Commissioner Food and Drug Administration Division of Dockets Management (HFA‐305) 5630 Fishers Lane, Rm.1061

Rockville, MD 20852

Re: FDA–2011–N–0842 Gluten in Drug Products; Request for Information and Comments

Dear Commissioner Hamburg:

The American Gastroenterological Association (AGA) is the trusted voice of the GI community. Founded in 1897, the AGA has grown to include 17,000 members from around the globe who are involved in all aspects of the science, practice and advancement of gastroenterology. The AGA Institute administers the practice, research and educational programs of the organization. The AGA appreciates the opportunity to provide comments on the request for information regarding gluten in drug products.

Celiac disease is an increasingly‐common, lifelong condition affecting as many as two million Americans. The only effective treatment for this is a gluten‐free diet, wherein the affected individual must avoid ingesting any gluten, i.e. the protein from wheat, barley and rye. The patient must remain highly vigilant in terms of hidden glutens in food or other ingested materials. The diet is not only difficult to follow, but patients must be aware of the non‐obvious gluten; even non‐food sometimes may be a problem. Very low doses or concentrations of gluten may be sufficient to cause inflammatory changes and/orsymptoms in patients with celiac disease. Doses as low as 50 mg have been shown to induce change.

The median age at diagnosis of celiac disease in the United States is 45 years. Many patients are diagnosed in advanced adulthood by which time they often need prescription medications for common conditions like hypertension. A frequent concern among patients and their doctors is whether their medications could contain gluten. This fear or concern leads to often‐difficult interrogations of patient’s medications by their pharmacists and physicians.

Recommendation

It is the view of the AGA that no ingredient derived from wheat, barley or rye should be included as part of any incipient ingredient in medications, over‐the‐counter or prescription. The only exceptions to this would be derivatives that have been proven to have a concentration of less than 20 parts/million verified by an assay sensitive for these proteins. Any medication wherein these ingredients exceed or could exceed >20 parts/million threshold need to be clearly labeled as “gluten‐containing.” This labeling must be clearly evident to the pharmacist and patient, as well as declared on the insert.

Rationale

There are many reasons why we believe that this should be so. Firstly, the difficulty of getting accurate information on gluten content makes life very difficult for manufacturing, physicians, pharmacists, and patients with celiac disease. This is further exacerbated by the wide use of generic medications, which are often interchangeable in patients from one prescription refill to another. This often occurs due to contracting or changes in insurance coverage by patients. Secondly, the essential nature of many medications for patients’ wellbeing and the hazard that patients avoid medications because of fear of gluten contamination is another reason why medications should generally be free of gluten. Thirdly, there should be consistency within the FDA

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between the food branch and the regulatory branch for medications. Currently, foods cannot contain wheat unless they are so labeled. At a minimum, this should apply to medications. Wheat is one of the listed common allergens that require specific labeling on foods under the FANA 2004.

The impact of avoiding gluten medications could be many fold. 1. This would have a substantial, reassuring effect on patients,

pharmacists, and physicians caring for patients with celiac

disease. 2. It would have significant time saving for any of these

individuals. 3. It may improve compliance of patients with their therapies. 4. There should be a cost saving to these patients as generic

medications would be interchangeable with no need to order

“dispense as written.” 5. Pharmacists would be clearly able to reassure clients of the

gluten‐free nature of the medications. 6. Doctors who care for celiac disease patients can prescribe freely

without the time wasting or without the concern regarding potential contamination or patient compliance with either prescribed medication or the gluten‐free diet.

It is possible that there could be some impact on the pharmaceutical industry for this change; however, as most of the incipient ingredients are likely sourced from relatively few manufacturers, it should not take a major change. It may be easier for the pharmaceutical company’s consumer/medical information line to accurately inform patients, pharmacists and physicians on gluten content of their products. In addition, the major source of starch in the U.S. is corn. Wheat is a major source of starch in other jurisdictions, such as Europe. It would seem to be economically beneficial to the U.S. to base much of the starch used as a filler on the dominate grain source available in the U.S. We believe that whatever temporary or minor impact there might be on the U.S. pharmaceutical industry will be minor compared to the

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savings and improvement of quality of life and efficiencies in caring for patients with celiac disease.

Thank you for your consideration of AGA’s comments on the presence of gluten in drug products. If we may provide additional information, please contact Elizabeth Wolf, AGA director of regulatory affairs, at 240‐482‐3223 or ewolf@gastro.org.

Sincerely,

Ian L. Taylor, MD, PhD, AGAF Chair American Gastroenterological Association

 

Tagging Celiac in Digital Pharmacy Files: Attorneys Get Your Parachutes Ready

I recently wrote a piece about my frustrations in determining whether certain medications were gluten-free or not (summary note: It's not always easy to determine).  I also posted testimony I submitted to the FDA on gluten-free labeling of medications.  Most recently I had an experience at a local CVS where I discovered that my kid's CVS digital "profile" did note that she had Celiac Disease but that the pharmacist on night duty claimed that he "never heard of Celiac."  After I informed him about it, I asked if you would find out but he replied that it was not possible to find out "after hours" but that he would leave a message for the pharmacist on duty in the morning.

As it ended up, the pill manufacturer did have a 24 hour service (I called them myself).  The CVS pharmacist also told me to "go online and find out." When I explained that some of the websites seemed difficult to decipher and were of unknown reliability, he responded by saying, "We don't have internet at the pharmacy." (Note: I did then asked him if he carried a smart phone but he ignored the question).

My big point: Pharmacies must 1. Take note if patients have Celiac Disease (Sprue) in their digital profile 2. Make note of the pill manufacturer AND LOT NUMBER on the pill bottle (use of wheat or corn in gelatinized starch or modified food starch varies from lot to lot) and 3. Contact the pill manufacturer (with lot number in hand) to determine gluten-free status of the pills.  

With prevalence rates conservatively estimated to be 1/130  companies like CVS and Ostco need to be on high alert that they may well be poisoning thousands of patients daily.  Aside from the moral question, the legal ramifications are huge.  I keep telling them this, but if the FDA fails to step in soon, the lawyers will begin parachuting in just as they did in the McDonald's class action gluten suit.

It takes a village (or two condos and a non-profit) to compost

I bumped in to my neighbor, Peter, who lives across the street in the old Cracker Factory (condo in Keene, NH).  Mary Ann (from the non-profit business incubator nearby) had asked him to bring over his composting bin that's been sitting idle in my condo building (The Carriage House) on the same street.  I helped Peter carry it over and so began a little experiment in city composting.  I think it's working because there's quite a bit of stuff already in the bin.  As Arlo Guthrie might say, people might just think it's a movement!

College Profs' nightmare: Custom Paper Writers on Net

It's one thing for people to cook up awful ways to make money ("let's write papers for students so they don't have to do it themselves!"), but another thing when they go one step further: Post nonsense comments on my (and other profs') blogs to create links to their websites.  So I won't post a link to the latest web criminal ("Rapid Writers") but let's at least be aware that these folks are not only promoting academic dishonesty but also violating the unwritten ethical rules of the web (they're not nice people).