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Go Bionic: Ed Damiano, Clara Barton Camp, and How the Bionic Pancreas “Really Works.”

During my visit to Clara Barton Camp yesterday, I heard the same sentiment over and over again from the kids wearing the bionic pancreas:  “It works.”

“It was weird not to touch the buttons when it beeped,” Addy said, an 11 year old camper at Clara Barton Camp who has been living with type 1 diabetes since she was two.  “I’d reach down to look at it or touch it when it beeped but then I’d have to remember not to touch anything.”

“A big change from needing to check every beep and look at the devices all the time, right?  So when did you feel like you were used to wearing it?”  I asked her.

“Yesterday.  Yesterday, it beeped and I didn’t reach down.  I just said, ‘Whatever.'”

“You trusted it?”

“Yes.  I trusted it.  It works.  If you check it, it’s perfect.  My blood sugars are perfect.”

Addy has been wearing the bionic pancreas since Sunday, part of  the Bionic Pancreas study taking place at The Barton Center (and also the Joslin Camp) this summer.  She’s one of thirteen campers at Barton taking part in the study, ages ranging from six to 11 years old, six girls suited up with the bionic pancreas last week and seven this week.  “My blood sugars have been perfect – I haven’t been low at all and I haven’t been high, except for one 203 mg/dL.”

If a week without blood sugar excursions sounds like an impossible dream, take heart.  Take pancreas, too, because this technology actually exists and is currently attached to seven girls in Massachusetts.  And not “seven girls stuck in a hospital bed under strict activity guidelines,” but seven girls who are running amuck at camp, swimming, dancing, singing in the dining hall, and burping at picnic tables outside of the cabins.  The bionic pancreas has been highlighted in the New York Times, NPR, chronicled extensively over at diaTribe, and has also been the subject of a frequently-downloaded-and-rabidly-shared New England Journal of Medicine article.

The system has a few moving parts:  two t:slim insulin pumps with the Bluetooth switched on for communicating with the phone (one filled with insulin and one filled with glucagon), a Dexcom CGM, and an iPhone.  An in-depth look at how the technology works together can be found in the NEJM paper, but the basic gist is that the Dexcom monitors blood sugars and sends that data to the iPhone, which is running an algorithm that doses insulin, glucagon, or refrains from dosing anything at all.  Lows can be corrected by glucagon, highs by insulin.  Meals aren’t carb counted, but instead the algorithm “learns” what a big meal, small meal, or snack is based on minimal input from the PWD.

“It’s beautiful,” I said to Ed Damiano, one of the principal investigators on the project, after seeing some of the blood sugar outcomes from previous studies.

“It’s still a little clunky,” he replied.  “I want to see one device, one infusion set.  But this?  It works.”

Currently, the camp study at Barton has girls on the full bionic pancreas system for five days, and then five days on their own insulin pump, but with the CGM blinded to the user and still uploading to the cloud.  Bionic pancreas campers are required to check their blood sugar at least seven times per day.  Due to camp safety protocols, the study team can’t let low blood sugars “ride” and assume that the bionic pancreas will step in with glucagon in time, so success on some levels isn’t judged by minimal time below 70 mg/dL but instead the reliable metric becomes how many times did the study team need to intervene for a low blood sugar.

This summer, there are a few new features on the bionic pancreas.  One is “microburst glucagon,” which is most useful for when people are disconnecting the system for swimming or similar, in efforts to provide a safety net for low blood sugars while doing that kind of activity.  There is also an option for temporary targets, which allows people to adjust their target thresholds.  “Normally, we aim for 100 mg/dL, but if we can adjust the threshold and show a change in the A1C based on that adjustment, we’re able to titrate A1C levels using the bionic pancreas,” said Ed.

Some challenges still exist with the system.  The bulky devices, for one, are their own challenge, but as the project moves forward, the diabetes community rallies to support current needs.  “Donna from Tallygear came up and made these ‘GO BIONIC!” belts in a matter of 48 hours.” Ed said, smiling.  “We didn’t ask her to do that.  She offered, and we are so grateful because the kids love them.”

The kids sing the praises of this device.  Ally, diagnosed in 2009 at the age of five, wore the bionic pancreas the week before Addy suited up. “It really works. When I saw the video online, I thought it was made up. I thought the girl in the video was lucky, and that her numbers were just perfect that day. And then I wore it [the bionic pancreas] and I was like, ‘Wait … it really does work!'”

Addy chimed in, her bionic pancreas belt visible over her shirt:  “Ally wore this last week and now I’m wearing it.  She said to me, ‘If you don’t want to wear it, can I wear it for you?'”

Ally nodded.  “I did say that.”

“Does the weight of the device bug you?”  I asked Ally.

“No.  It’s a little heavier but I don’t care.  Even with all the pumps on and the phone, I could still do a back-handspring in the grass.”

The study at Barton concludes this week and then moves over to the nearby boys’ camp.  But after this study finishes, there is still work to be done.  The amazing bionic pancreas team has come so far and the 2016 pivotal study is in sight, but needs community support to get there.

This is where the Bionic Challenge comes in.

According to the website call-to-action:  “The Bionic Challenge asks each family to raise $5,000 in 60 days (by September 1, 2014). If each family in attendance here today can turn to their friends and relatives and obtain 50 $100 donations (that means finding only about one donation per day for the next seven weeks), we can resume our development effort in September and keep on schedule for our final pivotal study in 2016. If we cannot resume in September, it could jeopardize our ability to secure a recently announced time-limited $20MM NIH funding opportunity, which is due in about nine months (April 15, 2015) and could support all of the clinical costs of our pivotal study.”

tl;dr:  the project needs the support of the diabetes community because, without it, the goal of a 2016 pivotal study may be delayed. If you can donate, please do. If you can’t, please consider sharing this information with someone who can. The more people who know how to help, the better.

After being promised a “cure in five years” back in 1986, the idea of the bionic pancreas being delayed because of money makes me feel insane. I could understand a delay if the technology wasn’t up to snuff, but to delay due to funding is unreasonable.  I saw kids playing outside yesterday afternoon, running around and laughing and having fun and the burden of diabetes seemed only as heavy as the belt around their waist, which with time and technology becomes smaller and lighter.

“I look at diabetes as management and maintenance,” said Ed, as we sat in the Barton Center bionic pancreas command center, where the study team was hard at work monitoring the campers blood sugars from the cloud.  “The maintenance part is the changing of an infusion set, the changing of a sensor, the checking of blood sugars.  The management part, to me, is the emotional part of diabetes.  The fact that you are so often told that you’re ‘wrong’ because you’re trying to thread the needle.  This device doesn’t take away from the maintenance part because it still requires that you wear something, do something, change something.  But it does make the management part smaller.  So much smaller.”

I don’t know if a biological cure will be seen in my lifetime.  I was diagnosed with type 1 diabetes in 1986 and have been living well, but not without frustration, as a host to this disease for almost 28 years.  My perception of what a “cure” is has changed as I’ve grown older, and my hope for something that takes this disease away fades with time.  But seeing the bionic pancreas at work, around the waists of children not much older than my own, and watching the worries of diabetes lifted from their minds and the minds of their families, I feel renewed hope.  More hope than I’ve felt in a long, long time because this is real.  I held it in my hand.  It filled me back up.

Because it works.

You can follow the progress of the bionic pancreas on the Bionic Pancreas website and “like” their Facebook page for more updates.  Links to articles featuring the bionic pancreas are here , and this video shows you how, and why, the bionic pancreas works:

Food Reminders.

“Half a cup?  Let me get the measuring cups,” my mom would say, foraging around in her purse for the ubiquitous set of measuring cups she toted around.

She always knew what  “half a cup” looked like because she didn’t guess.  Her management of my diabetes was precise when she was in charge, back in the day.

I am admittedly not so precise. At diabetes camp, I knew exactly what “half a cup” of coleslaw looked like because we were forced to eat everything on our plates (rules and regulations of diabetes camp in the early 90’s).  And when I was pregnant, I measured the hell out of everything out of fear of blood sugars over 180 mg/dL.  But in the ebb and flow of regular, non-specific life, I forget what half a cup looks like.  Is that size portion supposed to be closer to a pack of cards or a baseball?  (I kept writing that as “pack of carbs.”  Appropriate.)  Is half a cup supposed to fill 1/4 of my plate or more like 1/3 and what if it’s mashed cauliflower – does that mean half a cup is more of a loose estimate – and if it’s mashed potatoes, if I spread it around with my fork, is it like half a cup gains more surface area and thereby the carb count is diminished?

Logic isn’t my strong suit.  What works for me is reminding myself every few months what proper portion sizes actually look like, using measuring cups and scales and taking a few minutes to actually portion things out properly.

I tried to do this the other day, but realized that the measuring cups we received for our wedding were so worn that the measurement specifics weren’t legible anymore.

“Is this the half cup?  Or the third?”  I asked Chris.

He leaned over.  “I think that’s a tablespoon?”

So, for starters, we bought some new measuring cups.  And for the last few weeks, I’ve been trying to refresh my portion size memories.  For some of my go-to foods, like hard-boiled eggs, avocado, and chicken, I’m not worried by the “how much?” quandary, but this reminder helps a LOT for higher carb foods like pasta and fruit.  (The banana conundrum forever haunts me – “one banana” is usually the noted serving size, but bananas range from five inches to like fifteen inches, so which size is best and does size matter that much when it comes to bananas and also get your mind out of the gutter.)

Knowing proper serving sizes helps me better SWAG (scientific wild-ass guess) bolus, which helps me make better diabetes decisions and improves my blood sugar outcomes.  Blah, blah, blah, right?  I just wanted another excuse to use the picture of Siah in a banana.

 

How Real Do You Want It?

Over the last few weeks, I’ve been watching the articles about Lisa Bonchek Adams circle, ranging from the New York Times opinion piece by Bill Keller to the one written by Emma Keller (his wife) for The Guardian (which has been removed from The Guardian site but lives on in the archives), to the response piece written by Brian Loew at The Healthcare Blog and analysis by Susannah Fox on the Pew Research Center Fact Tank blog.

(That’s a lot of links in one paragraph.  I’ll wait while you click.  And please note that none of those links go to any dancing gerbil .gifs.   But this does.)

Lots of discussion about a patient who is sharing raw and unfiltered details of her experiences with cancer through social media venues.  For better or for worse, this is the new scrutiny of health on the net, and of real life chronicled on the Internet.

“Are those of us who’ve been drawn into her story going to remember a dying woman’s courage, or are we hooked on a narrative where the stakes are the highest? … Would we, the readers, be more dignified if we turned away? Or is this part of the human experience?” – Emma Keller

For me, chronicling my experiences with diabetes, it’s not for the “outsiders” who are looking in; it’s for the people who share that same condition, same disease, same struggle and who learn, thrive, and persevere through the power of common community and understanding.  Readers may have the option to “turn away,” but for those who live with chronic illness, we have no choice but to look directly into it.

Is there a right way to deal with illness?  A wrong way?  How real do you want it?

 

I learned about living with type 1 diabetes, and the “forever” journey that it is, through other people who had it.  Blogging wasn’t the first time I came into contact with other people living with type 1 diabetes.  Community came through the Clara Barton Camp in North Oxford, MA, where every camper had type 1 diabetes and almost every staff member does, too.  But there was a lonely, isolating gray area between aging out of camp and the coming-of-age of the Internet where diabetes was difficult for me.  Being a teenager, and then becoming an adult, was a tough transition, and even though I had a good support system through my family, friends, and medical team, I was lost in a sea of people who didn’t understand how light diabetes could feel on some days and how heavy it was on others.

Some people are uncomfortable with the idea of sharing so much private, personal health information on the Internet.  Hell, I totally understand that sentiment, as I was fumbling through Facebook yesterday trying to figure out how to delete people I hadn’t interacted with in years.  It’s not a flippant decision, the one to advocate for your own health and to share your story.  Scrape past the hesitation and the fear, however, and you’ll find people who are empowered by sharing, and lifted up by a community that has intrinsic knowledge of the places that hurt the most.

Over the last few years, I haven’t felt the “diabetes won’t stop me!” mentality I unwittingly held close for the first two and a half decades with this disease.  Though my health is still good and I am grateful, I’m seeing the emotional and physical manifestation of years with type 1 diabetes in sometimes small, and other times enormous, ways.  Patients with diabetes are writing about climbing mountains and running marathons and giving birth, but we’re also writing about complications like depression, eye disease, and eating disorders.  Even if it makes you feel uncomfortable, it’s real.

Being honest about life with illness and disease can be the best, albeit non-prescribed, ‘medication’ yet.  While it may also frighten and unnerve, honesty and community can validate, and empower, and inspire.

To quote Morgan Gleason, the fifteen year old who contracted meningitis while getting an infusion for an autoimmune condition:  “I am the patient.  I need to be heard.”

Diaries of a Diabetic Girl.

The last time I cracked the binding on these journals was back in 2009, when I was cleaning out the apartment I was living in at the time.  I happened upon them again last night, while searching for something in the attic.  (I never found what I was looking for up there, but I did come down with a bunch of stuff I wasn’t looking for.  Going into the attic is like going to Target.)

As I wrote a few years ago, these journals span the better part of ten years, starting from when I was about eight years old and going into my junior year of college.  They’re old, and tattered, and it’s fun to flip through them and see what was top-of-mind for a ten year old.  In the earlier journals, diabetes is rarely mentioned.  There are mentions of attending Clara Barton Camp, but nothing really specific about diabetes or insulin injections or any of the tasks I knew I was tending to at the time.  (I was busy being “just a kid” and not “a kid with diabetes,” which is the kind of childhood I was happy to have.)

But one entry, from back in 1999 when I was in college, talks exclusively about diabetes, and the period of burnout I was in.

“I have been diabetic for 13 years (this September) and I don’t know if I’ve taken the best care of myself.  I have eaten a lot of the wrong things.  I don’t exercise enough.  Even though I still test, I am reluctant to test and last week, I saw a 50 and a 350 in the same day.  Not okay.  I hate taking my insulin shot.  I’m really scared of lows, especially after the one when I couldn’t find the honey jar fast enough.  My A1C runs at levels that makes my doctor raise an eyebrow sometimes because she knows I’ve been thinking about having a baby some day.  I went to the Joslin Clinic last Thursday and they said I need to start thinking now about having babies much later.  Which is hard to think about, since I don’t even have a father for these not-yet-made babies.  Am I screwing up my chances of having a baby by having trouble controlling my diabetes?  It’s a weird place to be in, worrying about stuff that won’t happen for a really long time, but that’s how diabetes is – makes you worry about all the crap in the future that other people might not think about until it’s actually happening.  Must be interesting, not banging your head against a crystal ball all the fucking time.”

I wish I could send that girl a note, the 20-year old me who wrote with painstakingly neat handwriting (shocking, compared to the scrawled EKG graph my pen produces now), and tell her that just a decade or so later, she’d be sitting at her kitchen table and drinking coffee, having just sent her three year old daughter to school for the morning.  That even after crossing the line into “complicated,” it’s still okay.  The payoff seems irritating at times – “Work hard and the reward is … to keep having to work hard?” – but the alternative is unacceptable.  Life with diabetes often means trying, and continuing try, even when you don’t want to.

I’d also suggest that she stop cursing so much back in the day, because surely she’d kick that habit as an adult.

Surely.

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