We always keep an eye on the diabetes conference circuit of course, and although we can't possibly cover all the local events ranging from expos and meet-ups to research-specific forums, we do have some notes to share from four of these recent events -- providing a snapshot of trends, we believe.
On Saturday, our own 'Mine editor Amy Tenderich spoke at the Taking Care of Your Diabetes (TCOYD) conference in Santa Clara, CA, and heard some very informative presentations. I was able to attend the JDRF TypeOneNation event in Indianapolis, and some of our friends in the Diabetes Online Community were at the recent Washington D.C. and Austin JDRF conferences.
Actually, this is a big time for the JDRF, as many chapters nationally are hosting their local events, now universally branded as "TypeOneNation" -- including long-running events that used to have unique names, like the Research Summit in D.C. and the "Today and Tomorrow" conference in Metro Detroit; they're now all re-branded to fit the TypeOneNation mold.
Unfortunately, we've learned heard that JDRF as a whole is taking a cautious approach to the #WeAreNotWaiting movement and putting the brakes on any "official" discussion at these events relating to open-source projects, like the popular Nightscout/CGM in the Cloud effort. We're told by the JDRF higher-ups that local chapters are cancelling previously planned speakers, due to concerns that talking about these non-FDA-regulated solutions opens the organization up to liability.
It's a tough position for the JDRF, understandably -- especially given the many corporate/pharma sponsors involved in these local events. But it seems if speakers can talk about future devices in development overseas (also non-FDA-approved), then they should also be able to at least mention existing open-source D-tech without it appearing to be an "official endorsement" by JDRF. Besides, anyone who has Google access has probably already seen some of this online. And there are certainly plenty of JDRF families and individuals attending these events who are already using these solutions (like me!)... so ignoring it just seems a bit off.
Despite all that, we've gathered some great nuggets from these local events. Here's a notebook-style report on what we saw this past weekend:
TCOYD in Santa Clara, CA (Amy)
Taking Control of Your Diabetes events are always lively and fun, IMHO, with excellent opening talks by TCOYD director Steve Edelman and famous Diabetes Psychologist Bill Polonsky. There were over 550 participants for patient program and, and the CME program (continuing medical education for professionals) was sold out at about 240 attendees, we were told.
I spent most of my time in the Type 1 Track, which is still a relatively new addition to the TCOYD program, which historically served type 2's only. Over 350 people attended the Santa Clara Type 1 program -- of all ages and walks of life.
The mid-morning session on "CGM and Other Techniques for Glucose Control" drew a packed house. It was moderated by Dr. Jeremy Pettus and featured Dr. Bruce Buckingham, Dr. Daniel De Salvo, and CDE Jennifer Block from Stanford Medical Center. I have say that I was AMAZED at the level of detail we could discuss with this crowd: how and when to take insulin corrections while watching your CGM screen, smart bolusing for various types of food, and what to do about troublesome pump and sensor sites, just to name a few issues. Where else can you dig into the nitty-gritty of daily T1D challenges with a few hundred like-minded PWDs in the same room?!
Kudos to Steve Edelman for putting together such an excellent program, with breakout sessions on "Real-World Carb Counting," "Alcohol and Diabetes" (more on that soon), "Pimp Your Pump" and much more.
Bottom line: if a TCOYD conference is coming anywhere near where you live, do not wait! Sign up now!!
JDRF Indiana #TypeOneNation in Indiana (Mike)
A few hundred people came out to the JDRF Indiana conference that's been going on for a few years now. Like most of these, it is now renamed TypeOne Nation. Last year Medtronic's Chief Medical Officer Dr. Fran Kaufman captured everyone's attention, but this year there weren't any big national names -- so it was a purely local lineup, and to be honest, I wasn't as impressed as I was last year.
- Research: Fellow longtime type 1 Pat Fueger, a diabetes researcher at Indiana University, gave a keynote talk with updates on JDRF research -- from Artificial Pancreas to the ViaCyte encapsulation trials that have been making headlines in the past year. Pat's a great guy and I enjoyed hearing him speak, especially when he talked about how he wasn't convinced the current ViaCyte device (discussed below in the D.C. Summit section) is a game-changer, but rather the concept overall should be generating excitement.
- T1D Prevention: Pat presented one slide highlighting the $14 million that JDRF invested in prevention efforts in 2014 alone. The accompanying graphic was very interesting... (see image below)
- Advocacy... Not? Despite hearing a lot about access issues during the past year, particularly on Medicare coverage of CGM and JDRF's backing of that, I didn't hear any mention of that during the conference this year except in a few private side conversations. Hmm, I would have thought it'd be a focus point dictated by national JDRF leaders -- in the same way they're dictating that these events should not talk about Nightscout.
- Diabetes Tech: This session was led by a local CDE who used to work for Medtronic, but now has taken a spot at Lilly Diabetes. I had really been looking forward to this, but sadly it disappointed. The presenter took a very basic "D-Tech 101" approach, repeating a number of times how it was an overview and not meant to get into specifics about anything. And it had a very "FDA is the big bottleneck" style, which bothered me because the agency has clearly made incredible progress in the past few years in terms of listening to the patient community and speeding up the regulatory review process as much as they can.
- Psychosocial: This was the other session I was eager to attend, and frankly it was marginal. The session leader, local endo Dr. Mary DeGrout from Indiana University, took a "how to" textbook approach to addressing the mental and psychosocial side of diabetes. Ugh! Luckily the panel she moderated was pretty great, with two adult T1s and a "type awesome" husband of a longtime T1 who offered some good personal stories and tips about how to manage difficulties and find peer support. I almost jumped up in excitement when DeGrout specifically mentioned the Diabetes Hands Foundation (DHF) and Children With Diabetes (CWD), and then talked about attending the #DOCatADA session at last year's ADA Scientific Sessions -- that redeemed her, for me.
- Exercise: I had been looking forward to this this presentation by two fellow longtime T1s and really enjoyed it, since I'm working on getting back into an exercise routine myself. I picked up a few key pointers that I hadn't known, such as the fact that PWDs who exercise regularly generally need 10-15% less insulin. Sounds like motivation to me! And it was nice to hear some science explaining the whole "insulin super-charging" effect I've experienced, when exercise can intensify insulin action and impact blood sugars for as long as 24 to 36 hours afterward. The "danger zone" when you're most exposed to unexpected hypos, is 7 to 10 hours later, I learned.
JDRF Washington D.C. Summit (DOC Friends)
Put on by the JDRF's newly-renamed Chesapeake and Potomac Chapter (formerly the Capitol Chapter), this event also saw a name change to fit the TypeOne Nation branding. It brought in more than 800 people on Saturday.
Two friends from the DOC attending this year agreed to share some of their notes: Elizabeth Ransom, diagnosed with type 1 about 20 years ago who volunteers with the JDRF and works as a public health communications professional; and Jenni Maizel, diagnosed eight years ago as a teenager and is now studying psychology and public health at George Mason University while interning for JDRF. Here are their notes about the D.C. summit:
- Workshops (Jenni): The event kicked off with something new, two pre-program workshops: “Taking T1D to School” and “Managing T1D During Sports and Exercise." The sessions provided opportunities for attendees to receive advice from experts in the field as well as ask questions. “Taking T1D to School” was led by a variety of CDEs, nurses, civil rights experts, and more, and focused on the importance of 504 plans for children with diabetes, educating school staff, and tips for effective communication. “Managing T1D During Sports and Exercise” led by Gary Scheiner of Integrated Diabetes Servies, was one of the most beneficial presentations I’ve ever attended. Exercising with diabetes can be a major challenge. He explained that everything has an impact on blood glucose management during exercise: temperature, carb intake, body weight, and protein. He also noted that exercise never raises blood glucose, and that it’s okay to exercise with high blood glucose as long as you take a small correction bolus (except with ketones). I thought the two workshops were a great addition to the summit program and would love to attend more in the future.
- Molly McElwee Malloy: The main summit program was moderated by Molly McElwee-Malloy, a fellow T1D and who participated in the University of Virginia’s artificial pancreas trials. She's a certified diabetes educator (CDE) and registered nurse at UVA's medical center, and it was cool seeing her moderate the summit and lead the focus groups while also tweeting highlights to followers.
- JDRF's board chairman John Brady, a D-Dad whose adult son was diagnosed with T1D at age 3, spoke passionately, saying "We're at a point of real traction in the research... last year was unmatched, transformational." He reviewed key highlights of the past 12 months, including the Medtronic predictive 640G system just released overseas early this year and expected to hit the States in 2016; the MedT 670G known as a "hybrid closed loop" that, incredibly, is planned to come to the U.S. before anywhere else on the globe, starting in 2017; Janssen's Disease Interception Accelerator (DIA) program that targets T1D prevention as an investment for the company; smart insulin being developed by Merck that could be available in 5-7 years; and also how Novo is now "all in" developing glucose-responsive insulin.
- ViaCyte was a big draw at this summit, as the company's leaders were on hand to talk about their encapsulation research that's now in human clinical trials. ViaCyte's director of strategic relations and project management, Dr. Eugene Brandon, gave a colorful and informative presentation about the Encaptra device they're developing, an implanted unit that would use stem cells to grow pancreatic cells capable of creating insulin and regulating glucose levels while being protected from the body's immune response. They called it a "virtual cure" for T1D. Human trials began at UC San Diego last September. Four people have gone through the trials so far, though no data is being reported on this yet. Of course, we were all dying to know when this therapy would be become available… Brandon said probably not before 2020.
- Thermalin's Faster Insulin: Two execs, CEO Rich Berenson, and founder/CSO Michael Weiss, co-presented on this. Their slides showed the dramatically different effects that high glycemic foods such as sugar and while rice have on blood sugar levels compared with complex carbs, proteins, and a combination of protein, carbs, and fat. Weiss, who has the longest CV I’ve ever seen (40 pages) and claims 150 academic publications, explained the crux of the problem: “insulin starts too late and lasts too long.” Thermalin, which entered into a partnership with JDRF in April 2014, is working on a new insulin called Fluorolog, which will be five times as concentrated as the U-100 analog insulins we use now and will act more rapidly and dissipate more quickly. JDRF hopes this new insulin will improve the Artificial Pancreas systems in development.
- JDRF Advocacy (Jenni): I really enjoyed the presentation by Jessica Roth, JDRF’s new national senior director of health policy, in which she explained that advocacy is going to become even more important, to ensure that innovations like the Artificial Pancreas, encapsulation, and faster-acting insulins can be readily available for everyone. The government and healthcare providers must understand the importance of these treatment therapies. She gave an update on the #MedicareCoverCGM initiative, which has proven quite successful. The next step is to get CGMs covered for all age groups.
- Artificial Pancreas: Dr. William Tamborlane, who led the landmark Diabetes Control & Complications Trial (DCCT) at Yale, reviewed current progress towards developing an Artificial Pancreas. He said they’ve spent the past six years testing algorithms to normalize blood sugar using this therapy. He said the AP is one of the 53% of the therapies JDRF funds which are equated with a “cure,” which is now defined as, “restoration of normal physiology.” More mind-blowing than his explanation of the device were his A1C charts. The majority of people are not hitting A1C targets. The issues are biggest in young adults, in which A1Cs average around 8.5 - 9. In adults, the mean is approximately 7.5 - 8. He also gave a brief history of diabetes devices, showing the world’s first glucometer from the 1980s. I really can’t imagine living with T1D 30+ years ago; I am so grateful to be living in the era of AP development!
- What’s your “E1c?” Emotions of Diabetes (Jenni): Diane Herbert, a licensed social worker and clinical manager at Fit4D that offers personalized diabetes coaching, spoke about the devastation she felt when her son was diagnosed with T1D on his 5th birthday. Although I would have preferred this topic to be covered by a fellow T1D, I think she did a great job explaining the difficulties in relationships. She discouraged “policing," or constant diabetes-related pestering, such as “What’s your blood sugar?”or “Did you take insulin?” These kinds of questions can drive a PWD insane. I liked her three disease strategies: 1. Recognize grief as non-linear, 2. Establish empowerment, and 3. Anticipate and accept change. My favorite line was, “Think of insulin injections as a power booster.” Even as an adult, this way of thinking makes the daily burden of diabetes a little easier.
- Tom Brobson: The summit closed with fellow type 1 Tom Brobson, JDRF's national director of research investment opportunities, and I don’t think he could have done a better job being inspirational. One quote really stood out to me: “We work so hard to make diabetes invisible (to the world). We make it look easy. And we’re extremely good at it.” Right. In order for JDRF’s amazing research developments to become reality, we must keep educating people on diabetes, continue advocating, and keep donating.
- Twitter Camaraderie (Elizabeth): I was happy to see the Twitter feed #TypeOneNation bringing together several chapters hosting summits the same day (i.e., Indiana, Austin). That's one nice advantage of branding all these local events under one name. JDRF Nova Scotia tweeted: “You guys seem to be having a great #TypeOneNation day!! Way to go #T1Dchamps." This type camaraderie was also in evidence in the room, where people of all ages and stages met and exchanged ideas and support.
JDRF Austin TypeOneNation (Tarra Robinson)
Tarra's a type 1 in Austin, TX, and D-blogger at My Crazy Life who attended the JDRF Austin Type One Nation conference on Saturday. She tells us the first thing she noticed this year was that attendance was down, to about 105 compared to the usual 300+ people. "But I think that was due to not having a big-name celebrity speaker for the keynote presentation." She also noticed that the sessions seemed to be geared heavily towards parents, with fewer options for adults T1Ds other than the newest technology and research updates.
- Research: Keynote speaker Cynthia Rice, JDRF's senior VP of advocacy and policy, had a great deal of great news on the research front -- about the ViaCyte encapsulation study mentioned above and Artificial Pancreas work, that is moving along but faces a roadblock in not having a sustainable form of glucagon that can last in an insulin pump, and how the work on smart insulin is continuing by Merck and other researchers.
- D-Tech: Dexcom CDE Tomas Walker gave a great overview about the state of diabetes technology and all the CGM options that are available and in the works. Exciting stuff!
- Best Presentation: Type 1 Andrew Deutscher, author of “Typecast,” gave a talk reminding us that we need to reset our messages to ourselves. Our internal voices are often negative and that affects how we handle our lives. I loved the interactive part when he asked us to write down a message, and then try to change it to a more positive one, and then present it to the group it if we wanted to. Very powerful.
- Sidenote: I had also been looking forward to seeing John Walsh, the well-known diabetes clinical specialist who co-authored “Pumping Insulin,” who was on the agenda to talk about pump troubleshooting. But didn't show up and was never mentioned. I was disappointed about that.
Have you attended a recent local diabetes conference? Let us know what you thought about it. Excited, inspired, or disappointed?
I'm looking forward to attending the first-ever Diabetes UnConference in Las Vegas this coming weekend, bringing together D-bloggers and grassroots advocates. and while we're expected to stay offline and "in the moment" during the event, we'll surely publish a report afterwards here at the 'Mine, so stay tuned!