Category Archives: Events

Enlightened, but unknowing.

Even though it meant getting up very early on my day off from work, I was thrilled to go to Washington, D.C. last week for a diabetes town hall, co-sponsored by the Office of Minority Health at the U.S. Department of Health and Human Services, and the Office of Minority Health at the U.S. Food and Drug Administration.

The event, as you can imagine, was designed to facilitate discussion on ways to better promote diabetes prevention and care among the non-white populations in my country. I thought that was a terrific idea. After all, the prevalence of diabetes is much higher in non-whites than in whites here in the USA, yet many of the people affected are in vastly underserved communities, either due to socioeconomic reasons, location, or because their first language is not English. I get it, I thought. This is good.

But it turns out that there is still a lot I don’t know.

For instance… did you know that the prevalence of diabetes in the United States is highest among Native Americans and Alaskan Natives? At 15.1%, their risk of diabetes is over twice that of someone who looks like me. It turns out that 12.7% of African-Americans live with diabetes, and 12.1% of Hispanics do too. Only 7.4% of non-Hispanic Whites live with diabetes here.

But that’s not all. Eight percent of Asian Americans live with diabetes, but they are far more prone to being diagnosed with Type 2 diabetes at a lower body mass index (BMI) than other ethnicities. Those advocating for greater awareness among this population are touting an initiative called Screen at 23 to test all Asian Americans for diabetes if their BMI is at 23 or over.

As our presenters that day shared their data, it was clear that while I feel I’m enlightened, I really don’t know as much as I thought I knew. For instance, while there is data surrounding ethnic backgrounds of clinical trial participants, when we see a number that says “Asian”, we don’t know if the Asians in the study were of Japanese descent or Indian descent. When we see “non-Hispanic Black”, we don’t know if these are people of Senegalese or Jamaican descent. Those specifics could mean real differences in understanding the underlying data from a clinical trial.

How about this? Did you know that FDA has sponsored a Minorities in Clinical Trials campaign? The idea is to remove barriers to clinical trial participation for minorities, who, as a friend mentioned, may have transportation, job, family, or other special constraints that make clinical trial participation more difficult than it is for a lot of the majority population.

Did you know that people with prediabetes enrolled in a Lifestyle Change Program for a year under the National Diabetes Prevention Program at the Centers for Disease Control and Prevention (a mouthful… take a moment and breathe) showed, on average, a 5% to 7% loss in body weight, and had a 58% reduction in their risk of being diagnosed with diabetes? How do we promote the NDPP and its successes among states and tribal areas with vulnerable populations?

I learned a lot in this short, half day event. Here are a couple of nuggets that I heard more than once:

– We need additional data to understand segments of the various populations at risk for, and with higher prevalence of, diabetes. Subgroups of subgroups, if you will.

– Material and coaching rolled out to non-white populations need to be presented in a linguistically and culturally appropriate manner. One size does not fit all, and there is evidence that tailoring a message to its audience has a positive effect.

One of the words I heard mentioned a lot that day was disparities. The more we can reduce the disparities that exist in diagnosis; access to care, food, drugs, and devices; participation in clinical trials; and information that sends clear messages in terms that underserved populations can understand, the more inclusive we will be as a diabetes community, and the healthier all of us will be.

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The Diabetes UnConference Alexandria 2017.

Full Disclosure: The Diabetes Collective paid for my hotel accommodations so I could reprise my role as a facilitator at the Diabetes UnConference. All opinions are my own.

That t-shirt says it all: No judgement. Just support.

The fifth Diabetes UnConference has completed. Our venue was the Embassy Suites hotel in Alexandria, Virginia. This time, the UnConference was co-located with the Diabetes Sisters Weekend for Women conference. This created the dynamic where, in addition to the separately attended UnConference and the Weekend for Women sessions, there were general education sessions available to both groups.

Obviously, I can’t speak to the Weekend for Women track, but they’re a fantastic organization populated with some of the smartest, strongest, most supportive people you could ever meet… some of whom are actually Diabetes UnConference alumni and facilitators. The general education track was full of informative tidbits.

And the UnConference was the UnConference. A safe, supportive space where adults with diabetes and their PLUs, or People who Love Us, could talk about and explore the various things going on in our heads and our hearts these days. And believe me, there was a lot to talk about.

As usual, the Diabetes UnConference weekend included cheerful and excited Hellos. It included intense discussions, and evenings out with the best of friends. It included tearful Goodbyes and promises to stay in touch and plan meetups in the future. Which brings me to this:

There will not be a Diabetes UnConference in 2018.

There are a number of reasons for this. Mostly, it’s time. Let’s face it… diabetes, and diabetes advocacy, takes a lot of our time these days. Plus, now that we’ve done this five times already(!), maybe it’s time to take a breather and reimagine the Diabetes UnConference for 2019.

One thing’s for sure though: no UnConference does not mean no UnConference activity. I’m looking forward to UnConference alumni gathering throughout the country over the next couple of years, to continue discussions, support, and all the things that make our safe, protected time together as wonderful as it has ever been.

My gosh, I already miss my tribe.

Friends for Life Falls Church.

Like the Energizer bunny, Friends for Life just keeps going.

I think Children With Diabetes, the organization that stages the Friends for Life conferences throughout the USA, and in the UK too (and occasionally Canada), would rather be thought of on their own, as opposed to being associated with a battery company. But that aside, after attending many of these now, I am still amazed at how they make each gathering spectacular and unique.

In Falls Church, Virginia last week, I was working the DPAC table in the exhibit space again, like I’ve been doing for a while now. That means I don’t get to get into many sessions, but I do get to see a lot that goes on around the venue. Not backstage pass kind of stuff, but things that I think help me see how much of an undertaking each conference really is.

The first thing I noticed was the update to the sessions in the schedule. More advocacy sessions with Christel Marchand Aprigliano and Stewart Perry. Cynthia Rice from JDRF and Paul Madden from ADA also jumped in here and there.

Also, there were sessions about Succeeding as and Adult and Parenting with Type 1, a Safe Zone discussion for Significant Others of adults with T1D, and two sessions for Grandparents and Occasional Caregivers. I saw a session on Your Legal Rights as a Person With Diabetes. When you’re tackling these subjects, led by smart people like Kerri Sparling, Tamara and Sean Oser, Brian Grant, and Leigh Davis Fickling, you know you’re going to learn something significant without needing a PhD to understand the subject matter.

Unlike some of the other FFL events I’ve been to, this time I was able to see a lot of the staff working in the background to keep things running smoothly. Think about everything that needs to be done: Making sure everything arrives (think T-shirts, badges, and those wonderful green bracelets). Setup and registration. Getting rooms ready with the right amount of tables and chairs, screens to view presentations, and branding material. Coordinating meals and food choices with hotel staff.

That doesn’t even count little extra touches that mean a lot. When someone at registration asked me if I had diabetes (do I get a green bracelet? YES!), then someone else asked, “Do you still have an appendix?”, it was the funniest moment of the entire weekend. I don’t know how they all remember so much.

I’m not kidding… everyone works so hard, yet makes it look so effortless. Many of the first timers I met, from Ohio and North Carolina and Pennsylvania and beyond, really appreciated how they were made to feel at home, and how accessible everyone was. How can I describe it? Friends for Life is a comfortable place where everyone feels like they belong. It’s a conference, while redefining the very meaning of that word. Friends for Life is an experience, not one time, but always.

Here’s your notice: if you live in the eastern half of the USA, you should know that Friends for Life is coming back to Falls Church, Virginia next October. If you can’t make it to the big event at Disney in July, this is a great opportunity to learn a lot, interact with others living the same life you do, and enjoy being part of the biggest group that no one wants to belong to… that just happens to be populated with the most wonderful people. To find out more, go to childrenwithdiabetes.com

Extra: You should definitely read this post by Leigh Fickling over at Six Until Me. This describes FFL maybe better than anything you’ve read above.

**Note: I get nothing for writing about Friends for Life. DPAC paid for my travel and accommodations to Falls Church, Virginia. Opinions on Friends for Life are entirely my own.

We have a winner!

How many of you remember this post from a few weeks ago?

I have received multiple responses to this, and I am happy to announce that we have a winner.

Because a second, generous donor (who wishes to remain anonymous) stepped forward, we were able, together, to provide registration for the Diabetes UnConference and two nights’ stay at the Embassy Suites Alexandria, the host hotel for this gathering.

Like I said in the original post, I realize this doesn’t make everything suddenly more equal and inclusive at diabetes events throughout America. Especially in light of the terrorism that took place in one of my favorite places in the world, Charlottesville, Virginia last weekend, this seems like a rather meek gesture.

Sometimes we can’t change the whole world… but we can influence our little part of it.

I am thrilled about sending our winner on this trip, and they are excited about attending.

I’m not sharing the identity of the winner. I thought about it. But I felt that whether I did or I didn’t reveal, I could be open to criticism. By not revealing, someone could say that I’m trying to make it about me, or hide the fact that I did this. That’s a ridiculous argument, but someone could say that. If I did tell everyone who it is, I risk looking like I’m showing them off for my own benefit, which, frankly, is not what this scholarship offer or the Diabetes UnConference is about in any way.

So our scholarship winner is free to share that they are the scholarship winner, should they want to. But again, in the spirit of inclusion, I want them first and foremost to be thought of as a welcomed attendee… as a valued member of our tribe… as a respected contributor to our community… as a person.

For now, there is still time to register for the Diabetes UnConference Alexandria (co-located with Diabetes Sisters’ Weekend for Women conference), happening October 13-15. Room reservations are filling up fast, so if you want in, your time is limited.

I can truly say that it has often been imitated, but never duplicated. It is that special and unique. Come to our gathering and share. Experience. Explore. Not about diabetes life, but about life with diabetes. No structure. No judgement. Find your tribe. Love them hard.

See you in October!

Disclosure: I will be part of the team of facilitators at the Diabetes UnConference Alexandria October 13-15, 2017. All opinions are my own.

#BeyondA1c: Consensus.

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.

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