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Happy Thanksgiving, 2015 Edition.

This year, Birdy decorated our hands all on her own.

Happy Thanksgiving, everyone!  Thanks for being part of my extended family.


Guest Post: E-Patient Dave Takes on T2D.

Dave deBronkart and I met several years ago through patient advocacy and online connection points, and I’ve followed his health story as he has simultaneously followed mine.  Dave comes from the perspective of a cancer survivor who almost died and has turned his “free replay in life” into a crusade to open healthcare’s minds to the idea of partnering with patients.  So when he messaged me to tell me that his lab results for A1C came back a little elevated, I watched our health stories smash up for the first time.  Nothing like the experience of trying to change an A1C to bring people together.

Today, Dave is guest posting about his experiences toeing line of type 2 diabetes, and his take on patient guidance in the diabetes space.  (And for more from Dave, you can follow his very lively Twitter account or blogOr just Google him and see all the fun that pops up.)

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Dealing with an “increased risk” of T2D
by ePatient Dave

A1c Nov 2014

A year ago this week I got some blood work done and it came back with this great big numeric fart in my face: the number 5.8, followed by “Increased risk for diabetes.”

WHAT?? I. Am. Not. A. Diabetes. Person. Those people are Kerri, or Amy, or Dana, or Manny, or Scott, or Eric, or Dominick. It’s all those people I like and respect and enjoy knowing, but it’s not me. I mean, they’re not me. I’m not them – they’re a special class. What?  I mean, I’m a kidney cancer guy, not an insulin problem guy. I don’t even know what that is, really. And I certainly don’t know how to do it.

In hindsight it feels like it was easier when I was diagnosed in 2007 as almost dead with kidney cancer. And that episode was over in less than a year. Me with a permanent thing? (I know I’m sounding like an uninformed idiot here. That’s what it’s like when you’re in the denial phase.)

What to do? Back then I got it in gear, doing what I could despite bad odds, and I was one of the lucky ones, aided by a great online patient community, which my oncologist said (in the BMJ!) he thinks helped save my life.

So, what to do this time? My PCP told me about a diabetes prevention program run by the YMCA that reduces by 58% the odds of ever developing T2D, if you lose x% of your weight and get 150 minutes of activity every week. I’d have to pay for it – a few hundred bucks – but it seems worth it.

Withings weight curve 2015-08-30And boy has it been effective for me – check the graph from our wifi bathroom scale. (My results were not typical!) I lost 30 pounds in four months (January to May), dropped a few more to 197 in August… I’m back up over 200 now but I’m also a gotta be active guy … first time in my life I’ve felt I have to get outside and move around.

It’s really a lifestyle program – they teach what I’d call food awareness, but it’s really not a diet. They have you count fat grams, with a book or an app or whatever, but that’s no diet. Then later they get into some more detail. But it’s not complicated. And they have you get active – no particular exercise regimen, no in-your-face smiling Sweat Coach.

You know what, though? Effing stupid insurance won’t pay for it.  If the insurance industry wanted to reduce medical spending they’d obviously spend a few hundred on prevention, so I conclude that they’re either stupid or corrupt. (I know I don’t usually talk this way but I honestly can’t figure out any either explanation. Can you?)

Plus, the effing stupid program isn’t available to people who aren’t yet officially pre-diabetes! It’s a good program, and my wife wants to do it too, but they won’t let her in because she’s not almost in trouble! What the !@#@! are these people thinking, not even letting someone buy their way into this course?

And you know what else?  When I measured my A1c again in September, it was up … it was worse. 5.9.

So now I’m in the middle of trying to educate myself about that.  Do you have any idea how hard it is to find out what to do about that??

Well, I imagine you do know. I’m here to say, for sure, that although T2D is different from T1D, it’s clear to me that the system (whatever that is) sure doesn’t make it easy for us to do the right thing.

I do know this: digital tools made (and continue to make) my own work on this a lot more practical … I mean, without important information and without feedback tools, how is anyone supposed to do a good job? As I always say in my speeches – “We perform better when we’re informed better.”

Here’s to a radical acceleration of the tools we need – driven by what patients say they – we – need!

And I’m not even T2D yet – I’m just frickin annoyed at how I can’t even get clear instructions on what I should be doing about it! I believe health goals should be patient-driven, and the C word (“compliance”) should be thought of as achievement. So why can’t I get good guidance on that??

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Health goals should be patient goals, and there needs to be clear guidance on how to achieve them.  Thanks for lending your voice here today, Dave. 

Opportunities to Participate in Research Studies.

The best way to change diabetes is to participate in diabetes.  Research is important because it shapes and informs how the medical community takes care of people touched by diabetes.  So when there is an opportunity to participate in a research study – especially one that doesn’t require any travel or a huge time commitment – the “Yes, I’ll help!” is hopefully easy to offer.

I wanted to share two diabetes research studies that are currently recruiting participants.  There are gift cards as payment, so there’s extra incentive.  Even though I know helping the diabetes community is incentive enough [insert group hug emoticon here].

And please share this information with others who might be interested.  Thanks!!

Opportunity No. 1

This explanation is short and sweet, and comes from my friend Sean Oser (and his research team).  They are look to find out more about the challenges and success you might have as a person with diabetes.  This study is for people living with diabetes and will take about 30 minutes to complete.  (You’ll be given a $20 Amazon gift card for participating.)  Take a look at the information below, and please take the survey to see if you are eligible to participate.

The survey can be found here:

Opportunity No. 2

There’s a lot of talk in the diabetes community about artificial pancreases and bionic pancreases, but usually about the device functionality.  There haven’t been a lot of conversations about the potential emotional influence of these devices, and one research study is trying to change that.  Jill Weissberg-Benchell, psychologist and CDE out of Chicago, is hoping to have a focus group dedicated to that topic … which I think is very important because tech is terrific but you have to actually use it, and what it emotional factors keep you from using it?

I asked Jill to provide a little background on the study and what she’s hoping to accomplish, so that I could share that information with you guys.  Here’s what she said:

“Whether you have had experience with insulin pumps or continuous glucose monitors (CGMs) or not, whether you have participated in artificial pancreas trials or not, we would love to hear how you and your loved ones feel about the potential impact that automated insulin delivery systems (also called artificial pancreas or closed loop systems) could have on your daily lives.

The INSPIRE study team hopes to identify both the potential benefits and  the possible difficulties or barriers people may face in using such technology so that we can develop  ways to support people when these systems are available to use.  Your feedback will also be shared with teams around the world who are developing these systems so that they can integrate the feedback into their products before they are commercialized.

These focus groups, to be held at your convenience, using an internet-based video conferencing system, will involve one group for PWD and a separate group for their loved ones. In both groups, members of the INSPIRE team will help lead the discussions. These two hour meetings will give you the opportunity to share your thoughts about automated insulin systems in a casual environment and in a confidential manner.  We will mail each family a $50 Target gift card for their participation.

If you would like to learn more about the focus groups, please e-mail Jill and her team at: or call at (312) 227-0330.”

Sleep Number.

I love sleep.

But I did not love sleep while Chris was traveling for work these last few weeks.  Mostly because I did not sleep.

From the middle of September to last week, my husband was away for work. He came home three times for 24 hours apiece, which meant that we missed him terribly. And it also meant that Birdzone and I held down the fort for two months on our own, which, for the most part, went very well. Now that she’s five and a half years old, Birdy is excellent company and we had fun hanging out with friends and playing games. (For the record, she can kick my ass at Uno Attack. And Crazy Mates. If you haven’t played Crazy Mates, look into it. Buccaneer Bob is quite the fella.)

Doing the school routine and maintaining my work schedule was one thing, but getting enough sleep was the most difficult, and somewhat unachievable, goal. The compounded effects of not getting enough sleep took their toll over the last two months.

The first week that Chris was gone, I had a low blood sugar during dinner that was pretty intense. My best friend and another friend were over for dinner, with their kids, so there were people in the house.  I wasn’t afraid that my low was going to leave my daughter unattended.  But this low was long and drawn-out, making my mouth and cheeks numb and leaving my brain unable to formulate anything even close to a coherent thought.  I remember sitting at the dining room table, my Dexcom receiver hollering, and I didn’t respond for a few seconds.  I’d already had a juice box and some glucose tabs and my dinner, for fuck’s sake, but the food wasn’t hitting as fast or as hard as the hypo, so I was floating around on adrenaline and scraps of glucose.

It went on for about 45 minutes, and afterwards, the low hangover was epic.

I didn’t realize this low had scared me so much until a few days later, when I realized that sleep was not happening.  I wasn’t able to fall asleep at night and I woke up several times throughout the night because I was paranoid about experiencing that hypo intensity again.  I decided to share my Dexcom information, usually shared only with my husband and a trusted friend, with my best friend for the duration of my husband’s trip, because she was familiar with what the numbers mean, she knew how to respond in an emergency, and she lives five minutes away (and has a house key), so she could bust in if she needed to.

But even with the safety net of data-watchful eyes and technology that promised to buzz me awake if I fell out of range, shaking that hypo fear was difficult.  It stuck with me for the duration of Chris’s trip, alleviated only when I was either away briefly for work myself or when my daughter was sleeping at my mom’s house.  It wasn’t the actual low that scared me, but the idea that my child could find me low that kept me awake at night.

I wish this wasn’t the case.  I would love to end this blog post with a clever line with advice on how to manage these situations and the best ways to avoid fear of hypoglycemia, but the reality is that I slept through the night again once Chris was home.  And only then.

“It’s Diabetes Month … have you been advocating?” someone asked me in an email this morning.  And I realized I’ve been avoiding it a little, because diabetes has spooked me a little in the last few weeks.  I didn’t want to write about being nervous to go to sleep at night.  That didn’t feel like the “right” kind of advocacy (though there isn’t a “right” kind).

But then I realized that it was the truth.  And as much as I have accomplished despite diabetes, this disease influences my daily life in a way that far exceeds the seconds I spend checking my blood sugar or dosing my insulin.  I had trouble getting any sleep because I was scared.  Plain and simple.

The clever last line of this blog post?  I’m fucking thrilled, for a dozen reasons, that my husband is home.

Spare a Minute for Spare a Rose?

The Spare a Rose campaign is on tap again for February 2016, and time is marching on at a very quick clip.

Now is the perfect time to start thinking about your involvement in the 2016 campaign, and how your workplace can get involved.  Have you seen the Spare a Rose In My Office site?  You’ll find some tips on making Spare a Rose a company-wide effort.  (Hey Diabetes Companies … I’m looking at you.)

Media campaigns are already thinking about their February outreach efforts, so now is also a great time to connect with your local diabetes organization or media outlet, asking them to support people with diabetes in developing countries.

We’re in this together.  And we can use Diabetes Month as our catalyst for coming together to support our own.

To reiterate, from last year’s campaign,

“From February 1 – 14, the diabetes online community is hosting our annual Spare A Rose campaign.  You remember that one, right?  The one where you send eleven roses instead of twelve on Valentine’s Day, taking the value of that saved rose (averaged out to $5) and donating that to the International Diabetes Federation’s Life for a Child program, which provides life-saving insulin and resources for children with diabetes in developing countries.

We need you.

Yes, you.

You’re part of this, you know.  If you’re reading these words, or any words written by a person touched by diabetes, you are touched by diabetes.  Maybe you’re the parent of a child with diabetes.  Maybe you’re an app developer looking to connect with the diabetes community.  Maybe you run a magazine that hosts health-related articles.  Maybe you’re a PR company that hopes to influence the diabetes community.  Maybe you’re a representative from a diabetes company, or a teacher who has a student with diabetes in their class, or a researcher who studies this disease.

We need you to help amplify the Spare a Rose message.  You can donate to the charity, share the Spare A Rose link with your friends and colleagues, and truly take this initiative, this passion – and our global community -  to a powerful new level.

If you’ve emailed a diabetes advocate, asking them to share your latest press release or to engage in your survey, please spare a rose.

If you work in the diabetes industry and you leave diabetes in your office when you go home at night, remember that people with diabetes don’t ever leave diabetes behind.  And that many people with diabetes struggle to gain access to the drug that keeps them alive.  Considering bringing this campaign to your office.  Please spare a rose.

If you are touched by diabetes in any way – the partner of, the friend of, the coworker of, the child of, the parent of, the neighbor of a person with diabetes – please spare a rose.

If you are part of the greater patient community, I’m asking you to walk with the diabetes community for two weeks and help us make a difference in the life of a child.  With your raised voices, we make a greater difference.  Please spare a rose.

This is where we shine, you guys; where we take care of our own.  Where we can take our collective power, not as people with picky pancreases but instead as people with full and grateful hearts.  Show your love for this community on Valentine’s Day by sending one less rose to a loved one and instead providing life for a child.

Flowers die.  Children shouldn’t.

Please spare a rose.

And please spread the word!”

How Often?

“How often do you think about diabetes on an average day?”

“Not sure,” I said, checking my blood glucose twice so I could calibrate my continuous glucose monitor, mentally calculating the lunch insulin bolus I needed to take cover my food without making me low for my run later this afternoon. Looking at the five strips left in the bottle, I realized I needed to refill my kit. And to also reorder supplies.

“Probably a lot.”

Diabetes Research: My Evolution Toward a Patient Revolution.

I like Dr. Victor MontoriHe’s a Mayo Clinic diabetes doctor and researcher who is working for a patient revolution – versus healthcare corruption – and for treatments that fit patients properly.  He and I are part of a PCORI team looking at user-centered design and the development of patient decision aids, and I had the chance to meet with Dr. Montori in person at the PCORI meeting in DC last month. 

What I like most about Dr. Montori is that he doesn’t say what people want to hear, but he says what he feels needs to be heard.  I respect the lack of bowing to the status quo, and the desire to improve the system.  Today, for Diabetes Month [insert blue circle confetti here], Dr. Montori has graciously offered to share his perspectives on why the patient revolution is important, and how we are all a part of it.

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Diabetes research: my evolution toward a patient revolution

by Victor M. Montori, MD, KER Unit, Mayo Clinic

I can only speak of the picture I have had a chance to see directly since I started my career as an endocrinologist in 2000. I am referring to my perspective about diabetes. I worry my perspective is narrow and skewed, but it is what it is. So here it is, offered humbly in case it helps.

My training as endocrinologist focused on conducting research with my mentor, Dr. Steven A. Smith, research he had oriented toward discovering better ways of caring for diabetes in the community. He taught me about the different ways in which clinicians and communities could support people with diabetes, and how, in health care, specialists and generalists needed to work together. He saw the role of endocrinologists more as architects, designers of systems of care, rather than as artisans, designers of care programs for individual patients. He made me aware of the challenges poorly designed health care adds to the already complicated lives of patients. And he made me aware of the complicated lives of patients and how terrible clinicians would improve their standing by either directly firing patients or by chastising the noncompliant ones who would then leave the practice. These clinicians would then boast that they did not have noncompliant patients and had no trouble keeping them all under 7%. This to me exemplifies the corruption of healthcare.

I think there is a direct link between those early lessons and those I have learned as a researcher and clinician focused on diabetes in the last decade. My band of sisters and brothers, the Knowledge and Evaluation Research Unit or KER UNIT, works closely with a patient advisory group comprised of patients with diabetes who have met monthly since November 2004 to support researchers like us in our work. Firmly keeping us patient-centered has been their key contribution. The KER UNIT was formed on the basis on three principles: generosity, integrity, and patient-centeredness. These are lived principles and we constantly refer back to them to make tough decisions. They have served us well. As a result, for example, we take no funding from for profit corporations, funding that could stand as an alternative explanation – to scientific judgment – for how we have summarized evidence or presented it to patients and clinicians.

We focused our first efforts as a unit to understand how we know what we know, as this translated into what we told patients to do. In doing so we found that much of our dogma is based on unreliable evidence, that much of that evidence fails to tell us if patients will be better off with our interventions, and that it focuses on a mythical molecule, the HbA1c. HbA1c is the outcome of choice for all clinical trials, the metric of quality for most quality improvement projects, and the only grade on the gradebook on the desk of the endocrinologist-as-principal. And when we asked patients, HbA1c was as important as death as an outcome for diabetes research! The manipulation of patients and clinicians was complete.

With my colleagues at the KER UNIT, we then turned our attention to shared decision making and developed the first tool to help patients and clinicians decide together if the patient should take a statin to prevent heart attacks or which diabetes drug to choose. Those tools, found on trials to be effective, have remained freely available and are used at least 10,000 times per month, around the world. By bringing transparency to the consultation, patients and clinicians could find what is best for each patient, based on what is possible and effective and on what matters to patients.

In 2009, we started to develop an approach that seeks to advance the goals of patients while minimizing the healthcare footprint on their lives. This work involves recognizing the work of being patient, understanding the burden of treatment, and learning how healthcare could be delivered in a way that is careful with what it demands and kind with the precious capacity patients have to do this work and to do the more meaningful work of addressing life’s urgent demands while pursuing their hopes and dreams. We call this minimally disruptive medicine, and we believe it is going to transform medical care, particularly for patients living with chronic conditions like diabetes.

This is particularly important for patients with chronic conditions like type 1 diabetes. Patients with diabetes study, work, and grow families, develop careers and volunteer, plan schemes and pursue challenges. Diabetes sometimes gets in the way, but care of of diabetes – organized often to satisfy economic and business urgencies, almost always gets in the way. Think of the difficulties of getting stuff paid, approved, coordinated, or delivered, of getting medications refilled, getting records shared with other clinicians and with patients. Paper work, time work, worry work. Technologies are helping reduce the healthcare footprint of diabetes in people’s lives, just as an increase awareness of the human cost of hypoglycemia is helping nuance the care of patients with diabetes in hospitals and clinics. Hopefully the endocrinologist-as-principal judging the patient only on the basis of HbA1c levels is an endangered species we will not save. Only competent and compassionate medical partners and clinics, able to be careful and kind, need apply. Our team is quantifying the work of being a patient with diabetes and bringing to consultations tools to uncover why patients may struggle to achieve their own goals.

Our latest pursuit recognizes the limitations of only innovating within healthcare. We think we need to fundamentally change medicine and re-orient healthcare toward the care of patients. To achieve that we need to change the way health care is organized, paid for, delivered, and rewarded. Clinicians, my colleagues, recognize the need to recover medical care of the patient from the industrialization of health care, but they declare their impotence. Thus, I strongly believe it is time for a patient revolution.

Perhaps the next big civil rights movement, the patient revolution will claim that people cannot be left out, priced out, of the care they need. They will claim that people cannot be exposed to less healthcare than they need, or more healthcare than they want, and that health care must fit their context. They will claim that healthcare cannot start and stop at the hospital door, but rather should be complemented by policies that improve the health of the community and reduce the impact of factors that promote chronic illness such as pollution, violence, poverty, inequality, inequity, loneliness, homelessness, and poor nutrition. Through individual advocacy (not for a single disease or for a loved one alone) and collective action (not the walk, the run, the ride, or the bucket) we can bring change to make healthcare more about care for and about the patient. I invite you to mobilize your friends and family and to join the patient revolution.

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Thanks, Dr. Montori, for sharing your thoughts.  As patients and caregivers touched by diabetes, how can we be part of the revolution?  Patient voices and perspectives are not new.  We are the revolution.


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