Monthly Archives: July 2017

#BeyondA1c: Consensus.

July 27, 2017 – 9:18 am

Last Friday, I was able to take the day off from work and go down to Bethesda, Maryland for another in the series of #BeyondA1c meetings staged by The diaTribe Foundation. There were 100 or more participants in the room, nearly all of them smarter than me. Okay, all of them were smarter than me.

There were multiple presentations throughout the day, from researchers, academics, advocates, and others. It was a very full day.

This was designed to build upon previous discussions on this topic at the U.S. Food and Drug Administration. Remember crashing the web server at FDA back in 2014?. How about last August’s discussions in the Great Hall on the White Oak campus?

If I were to pick a theme for this meeting, I think the theme would be consensus. Everyone in the room appears to be dedicated to the idea that A1c should not be the sole arbiter of our success or failure with diabetes. But it’s still a complex issue.

Wait… let me back up a bit, and explain to you what something like this could mean in the future.

If we (and by we I mean all of us) went beyond A1c in measuring outcomes, it could mean considering time in range as a more reliable factor, and that could mean using more advanced CGM metrics. What those might look like, I don’t think anyone knows yet.

Going beyond A1c could mean updates to medical journals and medical teachings.

Going beyond A1c could mean reconfiguring U.S. Food and Drug Administration protocols, both on the drug and the device side.

Going beyond A1c could mean manufacturers changing the wording in our drug and device packaging.

Going beyond A1c could mean a new set of measurement criteria for some clinical trials.

One of the topics that kept coming up concerned language: do we distinguish a difference between a mild hypoglycemic event (like 70 mg/dL) and a more serious one (like below 54 mg/dL)? For the record, it’s not likely that the FDA would allow the word “serious” to be used, because that word carries a very distinct definition at the FDA.

But there was consensus in the room surrounding the notion that blood glucose between 55 and 70 would constitute mild hypoglycemia, and anything under 54 should be considered severe or urgent (or, insert your word here). So, if they get the wording right, and if I can draw a mental picture right, here’s what that might mean:

My endocrinologist might still perform an A1c, but be far more interested in my CGM data when deciding whether my diabetes management is on track, and when considering drugs, devices, and other therapy. New medical professionals would need to be taught how to do this, and existing medical professionals would need to learn it too.

Those conducting clinical trials would need to show positive time in range numbers in studies featuring new drugs and devices. Drug and device makers might need to include frequency of severe hypoglycemia in packaging for their products.

FDA might need to weigh time in range and frequency of mild versus severe hypoglycemia when considering approval of something new. They would also need to consider patient input: for instance, if mild hypoglycemia were to occur as a side effect of a drug, but studies indicated that severe hypos almost never occurred, patients might say “we’re okay with mild hypos… we just want to avoid the more serious cases”.

David Lee Strasberg moderates a discussion between Kelly Close (left) and Cherise Shockley


Those are all hypotheticals, of course, but they were all discussed at this meeting. I was also thrilled that Cherise Shockley was present, and brought many of the tweets from last week’s #Beyond A1c #DSMA chat with her to show those in attendance. It made an impression, from both a social media and a person-to-person viewpoint.

That brings me to another thing I was thrilled with: lots of patient-centered talk. I kept a running count of how many times the phrase “patient reported outcomes” was said throughout the day… my final count was 16. On top of that, there was a lot of additional discussion about how we, as patients, would like to see less emphasis on A1c, and how we’re already going beyond A1c to help us manage each and every day. In this regard, medical professionals, researchers, and clinicians need to catch up to us.

I need to thank Kelly Close and the diaTribe Foundation for putting together a fantastic series of discussions, and also for bringing such incredibly dedicated people into the room. Plus, thanks for making these meetings so open and transparent, and allowing me to be there in person.

In one day, I was able to hear from Kelly Close and Adam Brown. I saw a fascinating presentation from former American Diabetes Association Chief Scientific & Medical Officer Dr. Bob Ratner… he still has the passion he always displayed at ADA. Dr. Bart Van der Schueren gave a super presentation showing the European take on how Beyond A1c is evolving on the other side of the Atlantic. JDRF’s Aaron Kowalski brought his passionate voice, as usual, to a panel discussion on standardization of data, definitions, and terminology. I sat in a working group on clinical trials led by Dr. Lori Laffel of the Joslin Diabetes Center (we both agreed later that it was like herding cats). I met representatives from the device industry and FDA who were present. Yes, it was a very full Friday, but truthfully, I hated to see it end.

If you know me at all, you know I can often be more cynical than appreciative about some things. The fact that I’m so appreciative after this event is indicative of the hard work that so many caring individuals have already put in on this cause.

I’m sure there will be more discussion. Not sure where it will lead. But that brings me back to the idea of consensus that I mentioned about 500 words ago. I really feel like we are close on this. We need to get the language figured out, set the standards, then go to the various stakeholders in all this and push it over the finish line.

Everyone in the room Friday believes in the idea of going beyond A1c. They believe we have the tools now to do so. And the imperative. Why? Patients aren’t waiting. Now it’s up to all of us to help turn consensus into conscientious change for the better.

By StephenS | Posted in Events | Tagged , , , | Comments (2)

Just one step.

July 24, 2017 – 9:18 am

Update: Another donor has graciously stepped forward, and now I can say that we can provide registration for the Diabetes UnConference and Friday and Saturday night at the destination hotel for the event. Yay!
I will pick a winner on August 14.

I read with great interest this well-written article from Chelcie Rice that was featured over at Insulin Nation recently. Christopher Snider and his sister Jeanette talked about the post and the subject on their podcast, Mark All That Apply. I think both are worthy of attention, and for what it’s worth, both have me thinking about this subject again.

As I mentioned to Chelcie after he linked to his story on Facebook, I think about the lack of diversity every time I attend a diabetes event. It’s not that there is a lack of color at events; often, there is no color at all. Even though we all know that people of color are disproportionately affected by diabetes. It’s something that’s entirely different from the ethnic makeup in every other part of my life.

But hey, I’m an advocate… but wait, I can’t change my ethnicity… so what should I really do if no one shows up who doesn’t look like me? I’m not sure exactly what I should do. But I know what I can do.

I will promise to provide one scholarship to this October’s Diabetes UnConference to a person of color. I will promise to pay for registration to this event in Alexandria, Virginia.

This will only include the price of registration. I’m not rich enough to include travel, so that will not be included. I can’t guarantee much else either. But hopefully, this is something, and hopefully it will get someone to consider applying for the scholarship who up to now has been on the fence about attending a diabetes event.

Why am I doing this? Because I’m altruistic and wonderful? It’s a little more complex than that.

The truth is, every single time I’m at a conference or research summit, I notice the lack of diversity in the room, and I think about it. This past Friday’s Outcomes Beyond A1c meeting (more on that later in the week) was an exception, but most of the diversity in the room came from outside the USA. To this point, I haven’t done anything about what I’ve seen.

I’m also well aware that this won’t exactly solve the issue of diabetes meetings, conferences, etc. that are not as diverse as they could be. I mean, it’s not like people of color have been excluded from the events I’ve attended. And where there has been diversity, it appears to me that people have been welcoming.

But by and large, diabetes conferences and other events still look different from the way the rest of my world looks. And if doing this one, small thing helps to begin to change that, if it begins to help communities that have been underrepresented, I’m comfortable with my decision.

There are powerful leaders among us, and it would be ludicrous to think that they are all white. As I’m fond of saying, we need all the advocates we can get. Frankly, I don’t care what they look like. And while I can’t speak for them, I suspect that the white friends I have in the diabetes community feel the same way.

Likewise, there are many in need of support and empowerment in the diabetes community, and I have to believe the needs I see among those who look like me are at least matched by those who do not look like me. And if they’re in need, frankly, I don’t care what they look like.

I haven’t thought very hard about rules for this little effort. But for starters, here’s what I’m looking for:

– You need to be a person of color (loosely defined; in other words, you don’t look like me)

– Since this is for the Diabetes UnConference, you must be an adult living with diabetes, or an adult close to someone living with diabetes of any type

– You need to want to use your opportunity to help others… paying it forward is part of the plan

We’ll make up the rest as we go along.

If you’re interested, send me an e-mail using the E-Mail Stephen link in the upper left part of this page. On August 14, I will pick a winner from among those responding. Be ready for follow-up questions. I don’t want to make it difficult for you, but I do want to make sure you can make it, and I want to make sure this event is a good fit for you.

One more ask: Please share this with others you know in the diabetes community. I would be thrilled to have to choose from a number of applicants.

Finally, this is not all there is. If we think about it, probably all of us, no matter what we look like, can figure out a way to help make diabetes events look more like the rest of the communities we live in. I’m hoping I can provide scholarships in the future. Not sure if I can, but that’s the goal. But that’s not all I can do. Whether it’s through communicating with additional diabetes groups, or through a donation, or through continuing to be a welcoming presence wherever we are, I know you and I can help make diversity a part of the diabetes advocacy we all believe in.

We all want to reduce the burden of diabetes on everyone living with this disease. This is just one small step. A symbolic step perhaps, but it’s what I can do.
Now, let me ask: What can you do?

By StephenS | Posted in Advocacy, Events | Tagged , | Comments (2)

Another 5k in the books.

July 19, 2017 – 9:18 am

Well, I managed to get it done. Again.

This past Sunday marked the running of our neighborhood 5k. I’ve done this run every year since my early forties, with the exception of 2015, when I opted for surgery on a torn meniscus instead.

It’s a fun event. It’s great to be a part of, and it’s close to home. The weather was about as good as you can get for Maryland in mid-July: temperatures in the low 70s, with atypically low humidity, and not a cloud in the sky.

How did I do diabetes-wise? Only okay. Actually, it was a stark reminder of how adrenaline affects your blood sugar in a negative way. I woke up at 74 mg/dL. I had a little juice, waited around at home with a heating pad on my sore hamstring (what a difference that made), and then checked right before leaving for the race: 152 mg/dL.

Once I got to the race venue, I did some stretching and tried to stay hydrated. One more check before the race began revealed 192 mg/dL. Did I mention I was feeling a lot of stress about finishing this year?

Regardless, I was able to finish, and a check about five minutes after completion showed I had only gone down to 177 mg/dL. I was plenty hydrated; this was all stress. But I knew eventually, the stress would go away, and I could sink fast if I wasn’t careful.

I grabbed a bagel at the post-race spread (which is always nice, by the way) and put it in my bag so I could enjoy it at home. After eating a big, poofy bagel (think MEGA carbs), hydrating some more, and getting a shower, two and a half hours later, I was sitting at 94 mg/dL. Stress gone.

How did I do race-wise? Better than I thought I would. My fastest pre-race run was right around 36 minutes, and I didn’t finish any mile in under 10 minutes. But race day always makes you go a little faster. Though I don’t think I was able to do a sub 10-minute mile, I did manage to cover the 3.1 miles in 33 minutes, 12 seconds. Good enough to be 199th out of 462 runners overall, 20th out of 43 runners in my age group.

The photo above is really the only one of me that we got. However, I did record a little video after I finished, showing others finishing the race.

If you’ve been thinking of entering yourself in a race like this, and you start to wonder why you’re doing it, I hope you come back to this video for inspiration (watch full screen if you can). There weren’t a lot of people lining the home stretch, but we (especially Maureen & I) were vocal. When you’re on that last run to the finish, the feeling of having people cheering you on is indescribable. This is what we all run for.

By StephenS | Posted in Athletes With Diabetes | Tagged , , , | Comments (4)

Friends for Life Orlando 2017.

July 10, 2017 – 9:18 am

Full disclosure: I was able to spend last Wednesday, Thursday, and Friday at Friends for Life in Orlando, Florida. Diabetes Patient Advocacy Coalition paid for my travel. All opinions are unquestionably mine, and it was my honor to advocate before so many wonderful people.

Just like last year, I worked the DPAC booth in the exhibit hall at Friends for Life, the largest gathering of People With Diabetes in the country. I was also lucky enough to sit in a couple of sessions and spend time once again with diabetes friends.

I remain grateful for the opportunity to advocate for those living with and affected by diabetes, and in the USA, DPAC is the best, easiest way I know of to make your voice heard by elected officials and policy makers across the country. If you haven’t yet, please download the DPAC app now and add your voice to the growing chorus advocating nationwide.

There was quite a bit of lively discussion during the various advocacy sessions led by DPAC CEO Christel Marchand Aprigliano and Stewart Perry. People were asking questions after the sessions and letting their friends know about DPAC too, and that gives us all a great feeling. I know our advocacy efforts will only grow from here.

The rest of the conference (or at least the part that I was there for) was wonderful too, as always. The Children With Diabetes staff really goes out of their way to make everyone feel welcome… even the exhibitors.

I’m not sure I can tell you anything special about this year’s gathering though. I think there are a number of reasons for that.

First, think about it: there really aren’t any amazing product launches that are new. Medtronic’s 670g is fairly new, but Medtronic was once again absent from the largest concentration of Type 1 diabetes patients in one place anywhere in the country.

There weren’t any recent research announcements either. Nothing that makes patients (and especially parents) excited for the next improvement in diabetes management.

Plus, I think Children With Diabetes has a problem. It’s a wonderful problem created by their wonderful efforts to bring additional sessions to adults, and emerging adults, and teens and tweens, and parents, and other caregivers.

I guess what I’m saying is that I don’t want CWD to change any of that. Their challenge going forward will be to avoid having their amazing inclusiveness create a lot of smaller gatherings, rather than what has always felt like one big gathering of diabetes family.

That’s a tall order. But if anyone can pull it off, I suspect Jeff Hitchcock and his fabulous team can do it. Let’s face it: nothing stays the same. It’s not avoiding change, but instead embracing change and making it work for everyone, that helps great things evolve. And Friends for Life has always been a great thing.

In addition to that, there was one part of Friends for Life that I don’t usually pay much attention to… but it really hit me this year.

I took a couple of moments to go through the Quilt for Life exhibit that is always set up in the back of the hall. The display includes hundreds of quilts depicting various diabetes issues, interests, and people living with this insidious condition.

So to finish up, here are a few photos of quilts I noticed. I don’t know why yet, but the last one really got me, and it still does. I practically broke down right on the exhibit hall floor when I saw it. How does it affect you?



I am under no obligation to do so, but I should mention that there is one more Friends for Life gathering coming up this year, and it will be in my part of the world. Friends for Life Falls Church will be coming to the D.C. area October 6, 7, and 8. To find out more, CLICK HERE.

By StephenS | Posted in Events | Tagged , , , | Comments (3)

I don’t have to tell you, but…

July 5, 2017 – 9:18 am

I don’t have to tell you, but for the purposes of starting this blog post:

Getting older is hard.

I’ve been training since mid-May for my local 5k, the one I run nearly every year. Nearly every year, I start training in May, so when the race comes in mid-July, I’m ready to go 3 point some-odd miles without stopping.

I’ll admit, I hate to run. Hate it. I’m not very fast, though I’m not slow, and more than any other activity, running pushes my heart rate up. Usually, into the 190-200 beats per minute range, no matter how slow I go. Training allows me to keep it between 180 and 190 on race day, but that’s about as good as I can do.

The thing is… I like the race itself. Once the horn sounds and we’ve all started, it feels more like a party at 180 to 190 beats per minute. Plus, this event is close, about five minutes away from my house. And the truth is, there are far fewer activities (read also: competitions) I can get into at my age.

Okay, I know I’m not that old, but training this year has made me feel old for really, the very first time. I’m now at the point where I don’t know if I can run a sub-ten-minute mile anymore. I’ve been trying, but I’m not there yet. It’s hard to describe… but when I run now, I seem to reach a point where I just can’t seem to move my legs any faster than they’re already going.

Put another way, my top end speed is definitely slower than my top end speed has ever been. Even when I really push myself.

The good news is that my blood sugars don’t care. Rare is the occasion where I’m above 200 mg/dL these days, although I did have one terrible excursion in the over-300 range after a four mile run last weekend. Definitely hydration related. Once I got a correction bolus in, and about 40 ounces of water, I was back down around 100 mg/dL. So fortunately, I was only up there for around two hours.

The race is in a week and a half. After that, I’ll go back to training on the bike, though sadly, there are no bike rides to train for at this point. But I plan to run this race again next year, and do bike rides too, for a few years more, if I can still muster the energy.

For now, all I can do is look forward. There is still some hard training to do, but each run completed means one less run to do before the race. And I think that’s the point for me: concentrate on the next workout, the next event. Don’t worry about how much effort is involved, or how much more difficult it is now compared to 15 years ago.

The weird thing is, I feel weaker, more vulnerable than ever, at a time when I’m doing things that will actually help me stay active longer and hopefully, help me live longer. Like diabetes, concentrating on the good rather than the difficult will help me power through and achieve more than if I stick my head in the sand. A week and a half to go!

Editor’s note: I’ll be taking the rest of the week off (from running and writing) to volunteer at the DPAC booth in the exhibit hall at Friends for Life in Orlando, Florida. If you’re at Friends for Life, stop by and say hello!

By StephenS | Posted in Athletes With Diabetes, Exercise | Tagged , , | Comments (2)
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