Product Testing

Just a quick blog post to list a couple of Diabetes related product studies.

     On occasion, I have received calls to product-test diabetes related items that have not yet come to market, but of which, the manufacturers want opinions to improve or alter their product. I am not qualified for all of the tests, some need syringe diabetics, some need CGM diabetics, some need type-2 only. But for the ones that I qualified for, I think there have been four, here is a little about them. I was qualified for a fifth, but on my way to the study, a passenger in a double parked car opened his door into me exactly as I was passing on bicycle. I was fine, but due to the bent wheel, I could not make it in time.

1. Product test: Pre loaded insulin reservoirs - seemed like an item designed out of laziness. I do like to be able to refill my pump reservoir if I am out of insulin, and there was a lot of extra packaging that seemed like a waste.

2. Insulin Enhancer: there was a product that you would add to your insulin reservoir that, when injected via an insulin pump, was supposed to either make the insulin work faster, or more efficiently. It seemed a little convoluted in theory, but it's application was simple to use: which was what they were really testing.

3. Iphone App. This was a simple study, asking diabetics if they would want or use apps on their Iphone to track diabetes related necessities, like food and blood sugar diaries, and streamlined pharmacy updates and reminders. I did not have an Iphone of my own, but I had used one enough to just borrow one.

4. Online Personal Diabetes Coach. Similar to the Iphone app study, but a one stop shop for a health coach that would motivate diabetics to eat right and stay fit. This session was designed to see if people would feel about using one and providing health info in to personalize the experience.

Medical Study: Effects of Resistive Excercise on Insulin Sensitivity

      During my senior year in college, I saw an medical flyer posted asking type one diabetics to partake in a 5 day hospitalized study. I had just graduated college, so why not start a career in lab rat experiments. It was financially compensated, so in the name of science, I could not say no.

     After meeting with the doctor leading the study, I learned most of the time would be spent bed-ridden, and the bits of  working out would be minimal, as the whole point was to isolate weight lifting, and see its effects on insulin absorption compared to sedentary absorption.

     I remember having a roommate who was also participating in the study, but I don't remember anything about him. I know the day I got out, I celebrated with a friend at McGlinchey's downtown. I have not really thought about it since, but thanks to this blog, I decided to look it up, and it seems like it was completed 9 years later, and the results are posted here, in the journal of sports rehabilitation:

Insulin-Sensitivity Response to a Single Bout of Resistive Exercise in Type 1 Diabetes Mellitus

JDRF Promise Ball - 2001

     On May 5th 2001, My family and I volunteered at the JDRF Promise Ball. Every spring, the JDRF holds a fundraiser via live & silent auctions to raise money for research toward a cure. It is still going strong, now in its 31st year.

     Wealthy people, devoted folks, and local celebrities all gathered for a dinner and cocktails along with a hefty donation/fee at the Hilton along the Delaware riverfront. They walked around, drank, ate, and did that forced social interaction that many people seem very fond of. But the main draw of the night were table and pedestals placed around the ballroom lobby with many wondrous items for auction that they could all bid on. It was 15 years ago, and my pauper eyes were not allowed to stain their illustrious prizes (I just don't recall what was up for auction, and we could have bid on the items if we had a spare thousand lying around nearby).

     After they saw everything and tired of walking around, or tired from having their personal servants write down bids, they all shuffled into the ballroom to be served their sustenance with a collective eye-roll. A live auction was held for things that were more prestigious than the baskets of goodies and gift certificates in the lobby. Some folks spent their time looking at their pocket watches through a monocole, counting down the seconds until they could leave, while other donators bid on things like spending a day with a local celebrity (newscaster), golf with a washed-up athlete, vacations to places that did not want them, and sports memorabilia that probably could have done fine sitting out in the lobby.

     It was out job as volunteers to be runners, or folks who would take the winning item or representative item plus the validation ticket to the now-slightly less rich winner. With food typically falling out of their faces, we handed over their prize which they surely did not actually need. Sometimes a photo would be taken of the materialistic hand off, if the bid was unusually high, or if the item was unusually interesting. After each round, we would filtered back into line like cattle by the side of the stage, anxious for our turn to run the next prize out to the elite.

    Our thanks was a nice, mock-amber glass heart necklace attached to a red string.  We were able to take part in the appetizer self-service stations as well, and it was reward itself getting to feel small and insignificant around all of the big bellied aristocrats and their fur-laden accompaniments. But I guess it was fun, too.

ADA-Dartmouth HMC Winter Weekend

Hulbert Center Map

     Thanks to a couple east coast friends from Bearskin Meadows Camp, I was able to joined them as a counselor for an ADA sponsored winter weekend in association with the Dartmouth Hitchcock Medical Center back in 2004. Both friends had been counselors there before, but it was again fun to try out a new camp.

     Based at the Hulbert Outdoor center in Fairlee VT, this teen weekend had over 50 kids, and activities included a ropes course, ice skating, sledding, team building, and education: all geared toward confidence building and acceptance of their diabetes. This was nothing new and patterned all of the other camp experiences I've been a part of.

Outdoor Activities

     Nothing really stood out as being an exceptional experience, but I remember a couple of things.

I remember sitting at the orientation meeting with the friends from previous camps. It was a nice time to see them again, as it had been a couple of years since we last hung out or spoke in person.

I was one of the counselors for one of the teen boy cabins, and being teenage boys, they only wanted to go out and bother the girls. I think we ended up rigging a soda can full of water over the door to overturn on any kids that tried to escape for a nocturnal meeting. If i remember correctly, the girls were having similar problems.

There was a dance with games and competitions. I ended up winning the limbo contest, but regretted it later, as the game probably should have gone to one of the kids. But getting caught up in the moment, and being pushed by others drove the win home.

     I was not in touch with the camp again after, nor ever went back. Like the Clara Barton camp

Clara Barton Wacky Weekend

      The ADA camp director for the PA teen weekends had connections at other camps, including this "Wacky Winter Weekend Camp," hosted by the Clara Barton Diabetes Center (now named The Barton Center for Diabetes Education). The camp was named after the woman who founded the American Red Cross and was born in the same town of North Oxford, MA. I believe the camp location was on her original property.

View from the "Mountain" out behind the camp

                                        

     The main goal of the camp was to normalize diabetes, as it asked children with diabetes it bring their non diabetic friends or siblings. The camp is still in existence today, and is associated with Camp Joslin, named for Dr Elliot Joslin, who was one of their first doctors to administer insulin to children suffering with Diabetes in 1932 when the Clara Barton Birthplace Camp was first formed.  

Kids performing a song in the community room

     

     Because it was a two day-two night camp experience nearly 20 years ago, I don't remember that much from the experience. Here are a (very) few memories.

    For one of the free time activities, all of the counselors put together activities for the campers to participate at their choice. I was interested in the "mountain" out behind the property, and I wanted to take some of the kids - 10-13 years old, on an expedition up the mountain. I remember no one chose my activity, which was not really surprising, since there were other camp favorite activities going on at the same time.

Fog rolling in across the mountain top

     We also had some free time in the cabins between meals and in general when the weather was bad. At first many of the kids sat, playing with magic the gathering cards (it was 1997, after all). I was never into Magic, so they tried to explain what they were doing to me. I was an old man to them, but only really about 8 years older than most.

     On another free time period in the cabins, I remember we took all of the mattresses off the cots and made a wrestling ring to do some "pro-wrestling" activities. I was the ref, and I remember there were a set of twins that were always in the ring. Only one was diabetic, but the beauty of this camp was that here, the non-diabetic was the unusual one.  

Camp Utada

Camp Logo on a bandanna

     I stayed in contact with the Utah guys following the youth leadership conference. I was a senior in high school, and still going to the PA teen weekends. But I enjoyed the weekends so much, I wanted to see what it was like for diabetic camps in other parts of the country. And I used to ski, so when one of the guys asked if I wanted to come to camp out there, to a ski weekend at camp UTADA (Utah-ADA) this sounded like a perfect camp to check out. I'd finally get to see if the magic at the PA weekends was a universal thing or unique to us.

     It was the winter of 95-96, a record snow fall year for our part of PA. I remember, thanks to the snowdays, we were in school until mid June- a feat not easily attainable for the time. Needless to say, the depth of snow was not as grand out in Utah that winter, and I remember the piles of snow at the airport in Allentown were much higher than Utah, and the skiing quality was also much better back home thanks to the seasonal fluke. But I was not really going out there for the skiing.

     I remember being picked up at the airport by Dave, one of the camp directors, and the leader of the Utah clan at the YLC. We stopped by a Subway before making the treacherous journey to the cabin, Camp Kiesel, in the South Fork Canyon where the camp was located. Since we don't have mountains quite like the Rockies back east, I was in awe of the unfinished roads, and the lack of a guide rail, and the plunge to your death steepness of the cliffs. We bounced along the gravel trail leading to the cabin, pulling over where able to allow approaching or faster cars by. If they did have snow like we did in PA, I fear the roads may not have been accessible.

Me outback and up the hillside behind the main hall

     Although it was only 20 years ago, it was a fast-paced visit, and a whilrwind of new names and faces, so I do not remember all that much. Here are a few highlights:

• Although the snow was not that fresh or as well groomed as the natural snow back home was, I took the most pleasure using the rental skiis and going off trail, where the powder was thicker and real
• I did not make any long-time friends, but I remember having to stay over a night at a Mormon family's house before I flew back home (cannot remember if it was a counselor or camper's family). I remember there not being any soda, and the big, fun evening involved making popcorn. There were not many Mormons in Quakertown.
• I remember there being a dance, which is always a crapshoot with a group of kids getting together on occasion for a short couple of days. I'm sure they all knew each other much better than I knew any of them, so it probably made sense. The DJs also played the new 311 tune that I kinda liked at the time, Don't Stay Home. 
• During free time, I liked wandering around the camp grounds, the canyon was very pretty, and the weather was relatively mild for mid January
• I remember trying to fit in, but never really accomplishing it, with the cliques that existed out there. As an outsider, it was very interesting to see and be forced into universal social structures.
• I had my walkman with me, and remember I had just bought Ben Folds Five's first album for the trip out based on a CMJ music monthly recommendation of the song Underground. It was a worthwhile purchase.
• Although I was not blown away by the camp, and did not cement any long lasting friendships over the short 3 days, I could see the parallels as a camper and the friendly dynamics.

Camp Rules and Procedures. 

Embracing a Future With No Cure for Diabetes: an American Editorial

   

  

     I came to terms with this a long time ago. There is never going to be a cure for Diabetes. It's cool. I understand. I have accepted it.

     Why would anyone who could potentially cure it want to cure it? It is a disease that has it's own section of the job market and a significant piece of the overall drug pie chart. So, what is there to gain with its eradication, financially speaking? Imagine all of the hard working folks who would be out of jobs should diabetes go the way of smallpox. From diabetes educators and specialists, to insulin pump, test strip, meter, and insulin manufacturers, to dietetic cookbook writers, and diabetic neuropathy sock makers, and everyone in the chain of commerce. Glucagon and glucose tabs would be useless and unnecessary to manufacture. The industry would disappear and the displaced workforce would struggle to adapt. I would kinda feel horrible if millions of people were suddenly unemployed because something that has become so simple to control (relatively speaking) was cured.

     The truth is, before we could ever expect a cure, we need to look at diabetes as a business model. To be competitive and prosperous, a business needs to meet a supply and demand ratio with disposable products in order to generate a consistent, reliable income. The products need to draw forever consumers via absolute reliance, addiction, or repeat/replacement purchasing. Companies know this. It is business 101. The huge test strip to meter cost disparity is not because test strips are costly to produce. A meter only costs about 20 bucks, but the test strips- the thing used once and throw away- are 6000 times as expensive annually. The pattern exists in many other dynamics beyond diabetes. Video games cost much more than the console. Older cars used to last much longer and without as many repairs or breakdowns as new ones. Laptops and computers "are designed" to fail and be replaced after a few years. Couldn't all of these things be made better, stronger, more reliable? Have we lost that ability as technology has increased? My understanding is that a throw-away culture is much more profitable.

source: TXCOWBOYDANCER, from May 2015 Consumer Reports     

     Perhaps I've strayed too much... Getting back to diabetes, the ultimate goal for a diabetic related business is to manufacture products and treatments that extend customer lives and make diabetes easier to cope with. The history of diabetes products have followed this trend. At one time, needles were connected to glass reservoirs that needed boiling for sterilization and reuse. This was a difficult, time consuming process, not to mention, sustainable. Syringes then became disposable. The needles shrunk, were easier and less painful to use. Later on, insulin pumps made control even better. The original insertion sites were bigger, metal and restrictive. Over time, they became more comfortable, plastic, easier to use, and smaller. At the same time, fast acting insulin came along to treat high sugars better and more accurately. Now CGMs help regulate sugars better. We're getting closer to reliable technology which will create a perfect functioning external pancreas. Each step has brought diabetics closer to mimicking what non-diabetic bodies do. Each technological advance cures a little hassle of treating diabetes, but the more manageable diabetes becomes, the more we distance ourselves from a cure. Now, I am not trying to vilify the tremendous breakthroughs in diabetic care; I do live a much healthier life. I also accept this situation, and understand that there will never be a cure. 

     And why should there be? What is the actual incentive to cure diabetes? Maybe a few scientists are inspired by a loved one with diabetes, or themselves even, and want to be the one to find a cure. Who funds the research? What venture capitalist or drug company would want to put money into getting rid of such a money maker? How hard would other companies try to squelch the cure, or make it an impossibility to attain? And there lies the inherent problem: curing a lucrative disease does not work in a marketplace (or country) built on capitalism.

infographic from asweetlife.org

     Research is supported by grants or companies that profit from research. But there is no motivation for a company to invest in a cure of a disease that is easily treatable, and more importantly, self-sustaining and profitable. The money that could be devoted to "cure" research is diverted to develop technological breakthroughs. If any new breakthrough is discovered, the first reaction is not how to release it to help human kind, but how can it be made cheaper and more profitable. So when .orgs and foundations claim they want to find a cure, I suspect their message is false. Just look back at the evolution of insulin delivery and treatment. If the true goal of any fundraising company was to find a cure, then more money should have been granted in that direction over the past 75 years. It has not, and I'm OK with that.

     Sure, there have been cures produced for life threatening diseases in the past. But the diseases were cured in a different era. It was a time before technology reached today's standards, where we can now ask "can it be treated rather than be cured?" It goes back to the idea that we used to to manufacture products that lasted a long time. Thanks to increased profit margins, and an unhealthy obsession with wealth and capitalism, we now make stuff that breaks quickly and is easy to replace. We live in an era of quantity, not quality. 

     And I haven't even touched on the monster that is health insurance...

SNES Video Game - Packy & Marlon

       

     Chalk this up to the fuzziest of memories. At a diabetic product and technology fair, I remember getting this game. Looking at the back and some screen shots, it seems like it was sponsored by Accu Chek blood glucose monitors. You can't help but cringe as the down with it elephants trying to gain credibility with a younger video gaming target demographic. I did not have a Super Nintendo, but my friend did, so I gifted him the game that I think we tried for maybe 10 minutes.

 

     The play was clunky, and it was as tedious as having to stop to test and take insulin. The game was made before pumps were commonplace, so mixing and injecting insulin helped the elephants reach their goals at summer camp. I have a Super Nintendo now, so I wonder what this game is like today.

images sourced from gamefaqs.com, gamefabrique.com, retrogameguide.com & amazon.com

Diabetic Tattoo

Soon after getting the medic-alert tattoo & artist's business card

     I used to say I was the only kid in 9th grade who had a tattoo that their parents knew about. It was my mom's idea, stemming from my irresponsible habits. When I'd play soccer or tennis, I would take off my medical alert bracelet or necklace and forget to grab them at the end. I couldn't misplace my wrist, she'd say, like I would my jewelry.  It happened a enough times that getting a tattoo started as a joke, became an idea, and resulted in a reality back in 1993.

     It is my only tattoo, so the experience was not a gateway to getting more, although I have thought about another tattoo. I drew/recreated it in high school based on the snake and staff medical symbol, thanks to a computer aided design class. It also resembled the Red Hot Chili Peppers' logo, who were popular at the time.  

Tattoo today

     The main thing to consider in getting the tattoo was "where?".  We wanted to mimic a medical alert symbol's location. On the chest, representing a necklace, seemed impractical, as it would not be visible in most emergencies. The bicep, back, neck, leg were not usually observed by medical experts in the time of urgency. We decided that the best place was the wrist.  That is where a bracelet would be seen, and the specific location we chose is where an EMT would take a pulse. This was not smiled upon by some family and friends. Aside from the obvious, pearl-clutching idea of simply getting ink done, a much darker point was made that the placement was near the same location that holocaust victims received their ID tattoos. But the location made the most sense. 

     So with my parents consent, we went to the tattoo parlor, and explained our predicament. The artist told us of another customer that had his personal info: phone & address tattooed on his chest. I imagine he had a history of blacking out, or some sort of medical condition affecting his memory. The really unfortunate part of his story was that he had to move at some point. I think they said he had his old info crossed through with the new info added below. In my case, the joke was that it diabetes was ever cured (which is the real joke: a cure), I'd get the Ghostbusters' red circle & line around and across it.

Laughable Artists Rendition

     So I was super cool, 14, and getting a real, permanent tattoo. The artist traced my design onto my left wrist. We could not use my right wrist, because there was scar tissue there from when I was about 3 and leaned onto a hot pan while helping to make grilled cheese. I cannot say that the tattoo didn't hurt, as there are a bunch of nerve endings in the wrist, and minimal flesh did not soften the bone rattling as the tattoo machine needled the skin. But there I was: the only 9th grader who's parents knew he had a tattoo.  

     I experienced one of my funniest moments because of the tattoo. As I was signing out to use the restroom in high school, another classmate noticed the tattoo, and asked with 100% seriousness "Oh, Is that a band." I literally did not know how to respond, and in hindsight, I have a million amazing retorts. But at the time, I simply said "No, it is a disease, some people have it?" I took this nugget back to my friends, and like pulling taffy, we expanded it into a whole story about a band that I am in, pronounced "Dee-Ah-Buh-Tek," specializing in German industrial techno.

     It also saved my life one time, albeit, indirectly. I was at a friend's 21st birthday party. Being a good diabetic, and I bolused for all of the snacks and cake I was eating. Only thing was, I was too drunk to remember that I had already bolused, so I did it again and again and again. I eventually gave myself too much insulin, that I passed out on their couch. People thought I was just "sleeping it off," until (reportedly, as I was unconscious), they began talking about my tattoo. One of the mothers was a nurse, and she was interested to hear that I did not wear a bracelet or necklace, and wanted to see the tattoo. She grabbed my wrist to see it, but I was cold, clammy, and very near, if not already in insulin shock. With a liver detoxifying alcohol, I did not have any house-made sugar helping out either. They knew something was wrong. Ultimately, I went to the hospital thanks to a friend who had to return to the party in order to give instruction, and I turned out fine. But if I didn't have the tattoo, they would not have talked about it, and never felt my skin, alerting them to the problem, even if they didn't know exactly what to do.

     Because of the tattoo's success, we've also talked about- but never moved forward- on the idea to make this into a business. Not with real tattoos, but temporary tattoos: for kids and adults who do not want to wear jewelry, or are too small. Temporary tattoos would also be made for other medical problems, like allergies, epilepsy, or even Alzheimer's: any reason for current MedicAlert jewelry. They could come in fashionable designs for boys and girls, or simple, efficient and brightly displayed information. And because they are temporary, the business model would survive as people would have to continuously buy more. So go do that, someone, just asking for a 40 / 60 profit split. Thx!

A History of Seizures

     It has been a long time since I have had a seizure as a result of low blood sugar, but there was a period of time about 15 years ago or so, that I did have them. They would always be in my sleep, so I would never know I had them until I woke up with a sore jaw, or if my mom heard me and was able to revive me. One time, it even landed me in the hospital.

     I have seen our pet dog have seizures, and I can only imagine what it is like to witness a person, let alone your own child, have one. (Note: I do dislike comparing animal human circumstances as equal. One of the most indirectly, unintentionally insulting things I remember related to diabetes, happened back in high school.  I told my teacher that I might occasionally have to eat a snack or excuse myself down to the nurse's office because I had diabetes. She, without a hint of knowing how she sounded, yet still with completely honest sympathy, said "Ooohhhhhh, My cat has diabetes, too." I know she was trying to empathize with my situation, but it did not come across as understanding.) My typical situation leading up to a seizure at night was exactly this:

taken from an old Diabetes Instruction Aid book

     I would exercise, and go to bed with a normal blood sugar. In the middle of the night, the delayed "insulin reaction" would take effect in the form of a seizure. I woke up fine the next morning, a little sore, or perhaps some broken blood vessels under my eyelids, and a bit groggy, but I was ultimately fine. This lead me to the stigma of wanting to go to bed with a higher than normal blood sugar - a philosophy I still employ without thinking about it. It just seems safer, even after at least 10 years of seizure free nights. 

     So now, when I do exercise, I make sure to eat enough after the event. If I'm going to bed, I tend to err on the high side, and snack to boost it up if I fear a potential low, or "insulin reaction" as they medically call it, which is about as funny a term for low blood sugar as medicinal sugar is for mountain dew or skittles.

     Technology has also progressed to nearly eliminate severe low blood sugars and the resulting seizures. I got the Gluco Watch as a direct result of this "brittleness," and today, I'm happy to have the CGM guiding me through the night. Even if I'm not as active, and could never hope to play a four hour tennis match anymore, it's good to have a more hands on and visual control of my blood sugar.

A Daily Struggle

Being a diabetic over the past 26 years, I've heard my fair share of "stupid questions" about diabetes. As insulin pumps have replaced daily injections, and meters take 5 seconds, not a minute to test blood, I luckily no longer have to hear some of these. Below, set in the form of a skit and performed at Bearskin Meadows Camp (in '99), is a compilation of the naive and uneducated questions that I (and other friends) have heard over the years. They have come from classmates, random strangers, and future nurses of America (true story). Bottom line: even if the questions seem idiotic, moronic, empty of common sense or devoid of general knowledge, we have to take comfort that people are trying to empathize and understand...Feel free to comment more questions or ridiculous "facts" that you have encountered in the comments!