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Posts from the ‘Diabetes Advocacy’ Category

Drafting Off #DSMA: Diabetes Job Description.

I love tuning in to the diabetes discussions on Twitter – they are always insightful and make me see things through a different (insulin-colored?) lens. The final question of last night’s #dsma chat really brought out some interesting responses:

I wasn’t exactly sure what “position description for life with diabetes” meant, specifically, so I took it as a “job description” of sorts … and one that would vary for everyone:

Looking back, I’m grateful that my learning curve belonged mostly to my parents (which is good because I’m sure it was steep at the outset). Once I was ready to take over the responsibility of diabetes self-care, the disease was embedded solidly into the context of my life and the learning curve became more of a gentle, but constant, slope.

Reading the diverse responses from my fellow PWD on #dsma was an eye-opening experience. That’s what brings me back to #dsma every time, because there’s no set-and-standard answer to any diabetes-related query … we’re all unique and special pancreatically-challenged snowflakes. :)

Jamie summed it up neatly:

To join the diabetes conversation, watch the #dsma hashtag on Twitter on Wednesday nights at 9 pm EST. It’s a great way to wind down your night while building up our community.

The Baby-Sitters Club: Graphic Novel Review.

Stacey McGill had diabetes and – holy islets – she was cool.

She was one of the lead characters in Ann M. Martin’s The Baby-Sitters Club series, acting as treasurer of the club.  You can go deep in this wiki, where Stacey is described as having “a very sophisticated style, which comes from having lived in New York. She loves wearing flashy clothes and jewelry and doing different things with her hair, which she keeps looking fabulous.”  FABULOUS!  Some of Stacey’s likes are cited:  “babysitting, math, money, shopping, pigs, Mary Poppins, and fashion” as well as some of her dislikes:  “having diabetes, hospitals, people throwing up, other people seeing her give herself insulin injections, and barf buckets.”  (I will admit to reading the whole wiki and loving the hell out of it.)

I can’t disagree with those dislikes, because I also am not a fan of barf buckets.  Or diabetes.

While Claudia was my favorite BSC member to read descriptions of (read What Claudia Wore for why), Stacey was my favorite overall because of the shared diabetes connection.  According to BSC lore, Stacey was diagnosed with type 1 diabetes before she started seventh grade and her diagnosis was chaotic because it pulled her out of school and caused some riffs between Stacey and her friend Laine Cummings.  (Yes, I am switching over to my most Punky Brewster of outfits right now, as I type this, transporting myself back to 1986.)

tl;dr – Stacey was awesome because, at the time, my friends were reading The Baby-Sitters Club and it made my diabetes seem mainstream and almost cool.

Which is exactly why I jumped at the chance to review the graphic novel version of The Truth About Stacey for Graphic Medicine (thanks, MK Czerwiec, for this opportunity!)

The original book is described by the Scholastic website as: “Poor Stacey. She’s moved to a new town. She’s still coming to terms with her diabetes. She’s facing baby-sitting problems left and right. And her parents are no help. Luckily, Stacey has three new, true friends — Kristy, Claudia, and Mary Anne. Together they’re the BSC — and they will deal with whatever’s thrown their way . . . even if it’s a rival baby-sitting club!”

I remember reading the text book cover-to-cover and feeling that kindred spirit thing, and I wondered if a graphic novel would have the same appeal decades later.

It did.

The focus of the book is NOT on Stacey’s diabetes but MWD (moments with diabetes) are sprinkled throughout.  There is something so comforting, so normalizing, about seeing a character living with diabetes not as the focus of their life, but as part of what their character goes through.  The crux of the story in this book is about a rival babysitting club, but diabetes moments are woven in to illustrate (pun intended) how diabetes isn’t something you can assign to a character and then forget about.  You have to commit.  Diabetes is as ever-present as the ink on the page, and it’s refreshing to have a visual aid for an oftentimes invisible disease.

Stacey’s dinner plate – with throwback mentions of the ADA exchange system!

I’m sure it happens all the time, that you and your friends are reading the same book for the same reason (because it’s a good story/popular/on sale from Weekly Reader or the airport).  But how often do you, as a person with diabetes, get to have a sneaky, secret, awesome reason to enjoy a book?

The truth about Stacey is that even though she’s a fictional voice, the diabetes is real, and it gives a little, “Hey, me too!” moment for kids and adults alike.

Advocacy: Do It with Flair.

From @sixuntilme, after watching some of DarthSkeptic’s Tweets correcting diabetes misinformation fly by in my feed (thanks to @txtingmypancreas for highlighting):  “Why did you decide to take this wickedly funny high road?”

From @darthskeptic:  “It was partially based on frustration and partially based on ‘TheoryFail’ and ‘TakeThatDarwin‘ addressing and mocking people ignorant about basic science.”

Whatever the reason, I love seeing people who are tagging their desserts as #diabetes on Twitter being served up some education by @darthskeptic. Some examples:

And my favorite:

Carry on, @darthskeptic. Carry on.

Help People with Diabetes Access Care Data; Medicare CGM Coverage.

There are advocacy tides rising this morning, and we have a chance to jump on board.  There are two opportunities to raise our voices.

The FDA has proposed new guidance for  Medical Device Data Systems (MDDS) and the diabetes community has the opportunity to comment on that guidance document.  There are more details on the StripSafely website as to what that means and why we should care.  We have until August 25th to leave our feedback.

Here’s what you can do:

Leave Your Comment on the FDA Draft Guidance.

1.  Highlight and copy the text in red below:

Support:
I am encouraged by the FDA’s draft guidance on MDDS. I support the FDA’s position that technologies that transport data, without changing values, are low risk. I believe that access to medical data should be available on multiple platforms that are accessible to both medical professionals and patients. Access to this type of data is becoming increasingly essential in healthcare, with the potential to reduce costs and improve outcomes – in fact, not having timely access to needed data poses a far greater risk. I strongly support access to this type of data and am pleased to see FDA recognizing its importance.

Diabetes:
People living with diabetes depend on data in order to minimize the chance of life-threatening complications that can arise with very little warning. I am happy to see that in his blog post Bakul Patel specifically mentions diabetes devices. I support this guidance’s decision to not mandate the PMA process for MDDS that include diabetes information.

Suggestions:
The draft guidance seems to be focused on data provided by MDDS to healthcare professionals. It should be modified to also explicitly state the value of access by patients, particularly for chronic conditions like diabetes where patients need access to their own data to manage their own care as safely as possible.

Real Time:
The draft in section V-B seems to precludes active patient monitoring. Specifically how or if this impacts diabetes is unclear. A clear definition of active monitoring should be included in the guidance. I strongly suggest that real-time access by patients to their own data *not* be defined as active patient monitoring. I strongly support including in this guidance more open access to information from continuous blood glucose monitoring for patients with diabetes. The appropriate risk of device performance is regulated through the device PMA, and shifting CGM data to secondary screens does not in any way increase risk. From a patient perspective, secondary screens significantly decrease risk by making information more readily accessible to the patient. This is particularly relevant for those of us who may be unaware of early stages of hypoglycemia.

ER and Hospitalizations:
Geller et al estimate in JAMA (JAMA Intern Med. 2014;174(5):678-686. doi:10.1001/jamainternmed.2014.136.) that almost one hundred thousand Americans a year are treated in the Emergency Room for insulin related hypoglycemia and that about one third of those are admitted. Timely access to real time sensing data may help prevent many of these ER visits. This suggest real opportunity to mitigate risk through secondary device display of CGM information.

Multiple Data Sources:
Existing regulations state that ‘Accessories to classified devices take on the same classification as the “parent” device. An accessory such as software that accepts input from multiple devices usually takes on the classification of the “parent” device with the highest risk, i.e., class.’ (http://www.fda.gov/MedicalDevices/DeviceRegulationandGuidance/HowtoMarketYourDevice/PremarketSubmissions/PremarketNotification510k/ucm142651.htm ) People managing diabetes often use multiple devices to provide the data needed to follow care instructions. Bringing that data into a single application would improve patient understanding. For example finger stick measured blood sugar, CGM trends, amount of insulin infused, and the time of each are all information that patients juggle. A dashboard displaying all relevant diabetes data would improve safety and reduce risk, compared to forcing the patient to consult multiple devices and displays.

FDA’s Dr. Courtney Lias offered promising comments on diabetes and mobile devices at the Keystone 2014, “Practical Ways to Achieve Targets in Diabetes Care” sessions. Closer Look reports that Dr Lias, in comments on artificial pancreas, spoke of a strong FDA interest in consolidating devices through mobile technology to facilitate better diabetes care. She reportedly spoke of “component artificial pancreas system,” where patients could choose component devices of a system. I fully support the vision Dr Lias shared. This proposed MDDS guidance can encourage logical, safe and incremental steps towards that future by opening multiple diabetes devices to display on a mobile devices.

Conclusion:
Diabetes patients implement the individualized care programs created by our doctors based on real-time data from multiple FDA-approved medical devices. Easing the accessibility of data from those devices improves our ability to follow our care team’s instructions. I support the FDA’s adoption of MDDS guidance that incorporates a nuanced appreciation of the low risk and incredible value in using MDDS to transmit and display diabetes data.

2.  Click here  and paste the text you copied into the comment box.
3.  Fill out your information.  (Note:  You’re commenting as an individual so be sure to uncheck the box that says: “I am submitting on behalf of a third party.”)
4.  Click the Category “Individual Consumer.”
5.  Click continue.
6.  Review, check the confirmation box, and submit your comments.

Sign the “Tell Medicare to Cover Continuous Glucose Monitors for People with Diabetes” petition from the JDRF. 

People with diabetes live longer, healthier lives these days.  (Celebrate!)  As a result, so many of us have the privilege of aging well.  Bottom line?  We’re getting older.  And when we enter the Medicare age bracket, continuous glucose monitors will not be covered by our insurance.  But we have a chance to change things.  Here’s something you can do in less than 1 minute that will make a difference:

  1. Click here for the petition.
  2. Sign it.
  3. Share it.
  4. Pat yourself on the back and carry on.

Oh, this is a real thing with an actual patent pending. (source)

Thank you for giving these issues your attention.  The community is lucky to have you.  And you.  But especially you.

 

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:

Snapshots: Fell Off.

Until next time.

Unexpected Advocacy.

The last thing I wanted to do was take my cover-up off.

Chris and Birdy (and our friends and their daughter) were at a water park in New Hampshire where kids can run and play in safe-for-littles sprinklers, pools, and water slides, and as the adults, we were tasked with guarding the perimeter.  Pacing back and forth, the four of us kept watch on our kids, ready to jump in at any moment to help them climb a slide, pick themselves up if they fell, or slather on more sunscreen.

I didn’t care who saw my body.  Not really, anyway.  I’ve run miles and given birth (not simultaneously), so I know there are strengths and weaknesses to my frame, but it wasn’t the shape and curve of my body that made me want to stay covered up at the water park.

I didn’t want people staring at the diabetes devices stuck to my body.

“Oh, suck it up.  No one is looking at you.”

Of course they aren’t.  They don’t mean to.  But when someone walks by wearing a bathing suit with a few curious looking devices hanging off it, it’s hard not to notice.  My standard beachwear is a bathing suit with my pump clipped to the hip, the tubing snaked out to wherever the infusion set happens to be living, and my Dexcom sensor taking up more real estate elsewhere.  These items aren’t jarring, and people don’t snicker, but they do look twice because cyborgs aren’t the norm.

Most of the time I don’t think twice about who might look, but on this particular day, I felt self-conscious.  Why?  Who knows.  Who cares.  I just felt eh that day.

But motherhood dictated that my self-consciousness take a backseat to being part of Birdy’s waterpark experiences, so I sucked it up and removed my cover-up.  My insulin pump infusion set was stuck to the back of my right arm, the tubing snaking down and tucked into my bathing suit, where the pump was clipped to the back.  My Dexcom sensor was mounted on my right thigh.  Even though these devices are reasonably discreet, I felt like I had two giant toasters stuck to my body.


Birdy needed help climbing to a higher platform in the play area and I helped her do that, thankful that my pump was waterproof.  We ended up in the sprinkler pad for a while and I was thankful that the tape around my Dexcom sensor was strong enough to withstand the water.  After a few minutes, I got over the whole “blargh – I don’t want to wear giant toasters” feeling and got on with things.

“Excuse me.  Is that an insulin pump?”  All casual, the question came from behind me, where one of the park lifeguards was standing.  His arms were crossed over his chest as he confidently watched the pool, but his question was quiet.

“Yeah, it is.”  I wasn’t in the mood to have a full chat about diabetes, but I didn’t want to make him feel awkward for asking.

“You like it?”

“I like it better than taking injections.  I was diagnosed when I was a kid, so the pump is a nice change of pace from the syringes.”

“I bet.”  He paused.  “I was diagnosed last August and I’ve been thinking about a pump.  But I hadn’t ever seen one before.  Is that it?”  He pointed to the back of my arm.

“Kind of.  That’s where the insulin goes in, but the pump is this silver thing back here,” I pointed to the back of my bathing suit, where my pump was clipped.  “This is the actual pump.  It’s waterproof.”  A kid ran by, arms flailing and sending splashes of water all over the both of us.

“Good thing,” he said.

“For real.”  Birdy ran by to give me a high-five and then took off playing again.

“Your kid?”

“Yep.”

“How long have you had diabetes?”

“Twenty-seven years.”

He gave me a nod.  “Thanks for not making it seem like it sucks.  Enjoy your day,” and he moved towards a group of kids that were playing a little roughly.  I stayed and continued to watch my daughter play, very aware of my diabetes devices that, for the first time ever, didn’t seem quite noticeable enough.

 

(Also, today has been unofficially designated as a “day to check in” (hat tip to Chris Snider) with the DOC blogs that we’re reading.  I read a lot of diabetes blogs, but I don’t often comment because I usually want to say something meaningful, instead of “I like your post.”  (But I do like your post!)  But instead of finding that meaningful comment, I usually roll on and forget to return to comment.  NOT TODAY!  Today I’m commenting on every blog I read, because that’s the name of the game.  I love this community, and today I’ll show that through comments.  So please – if you’re here, say hello!  And thanks. xo)

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