You can walk away from diabetes-focused conferences with more than dry science and research news. Really, you can! That's what I did recently after attending the Diabetes Today and Tomorrow conference held in the suburbs of Detroit on May 12. I took away two important nuggets of information that can help me better live with diabetes:
Secondly, the hemoglobin A1C test that we all rely on so much isn't perfect and may be more flawed than we'd ever thought. In fact, it may have been misleading us all this time, and there could be a way to get a little more context as to what the number really shows about our diabetes management.
As a chocolate milk lover and a PWD (person with diabetes) who hasn't had the most respectable A1Cs throughout the years, these key takeaways got me pretty excited about this event, put on by the JDRF Southeast Michigan chapter. It's described as the largest of its kind in the country, with about 1,200 people attending on Mother's Day weekend.
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Now in its fifth year, the day-long conference focused on Breaking Down Barriers for this family disease, and it brought in about 27 medical professionals and diabetes advocates to talk about everything from exercise, to new research concepts, to legal advocacy issues to a bevvy of general topics important to those of us living with diabetes. Not to mention the 28 exhibitors that had booths set up, ranging from pharma and medical device companies to medic alert dogs and clinical programs.
The event had two opening speakers, a lunch keynote and four concurrent sessions both in the morning and afternoon.
Obviously, with four sessions going on at the same time, it's nearly impossible to be at them all (my clones stayed at home this time). The JDRF organizers said they didn't record the sessions, but that was an idea they were considering for the future to allow more people access (hint, hint).
Here are some of the highlights...
Dr. Irl Hirsch, professor of Medicine at the University of Washington School of Medicine in Seattle
Diagnosed with diabetes at age 6 in 1964, this guy's really, really smart and is a worldwide ambassador on diabetes, a leading voice in analyzing the real meaning of the HbA1c test since it became the standard in 1993. Hirsch says we've started seeing a trend in "geriatric type 1," something he sees as good news because it means more type 1s are living longer thanks to new technologies and treatments. But our D-Community has been misinformed in thinking that the A1C is an infallible test showing our average glucose levels during the past 90 days. Actually, he says it has a lot of problems, including that it can be weighted in the past 30 days so that someone with higher or lower blood sugar readings can skew the results.
"This is a test you can study for," Hirsch says, and about 14% of A1C measurements may be off. That information from a study will be released at the upcoming American Diabetes Association's 72nd Scientific Sessions in June. Research is also showing that PWDs with new heart valves have a lower A1C because the red blood cells are being destroyed with each beat, and the same is being found for those PWDs with larger spleens. Yet, those with higher testosterone levels — which increases red blood cell counts — have higher A1Cs. Generally, the older a PWD gets, the higher the A1C goes and minorities and different ethnic groups might see A1Cs that are a half-point higher, he said. "This is not a perfect test, but it's still the gold standard and is mostly accurate."
(I'll pretend I didn't hear that last part, and just hope that I fall within that bracket of PWDs whose A1C is less than accurate... meaning my number is actually lower than the one appearing on my lab reports.)
The Glycomark test — an intermediate way monitoring of glycemic control measuring biomarkers on post-meal spikes — can be used to better understand the A1C, Hirsch says. PWDs with an A1C less than 8% should get the Glycomark test to check for variability of your BG levels. It's widely available, but can depend on location and cost may vary between insurers and the medical facility you frequent. Initially, the Glycomark test goal is greater than 7% (the higher the better, unlike the A1C). Interestingly, this test is already being used to better predict the birth weights of babies (whereas the A1C cannot) to help provide more guidance on whether a mother-to-be with diabetes should consider a C-section.
Darlene Deecher, senior vice president of research for the JDRF based in New York
Outlining the JDRF's new tagline and three-pronged mission to Cure, Treat and Prevent, Deecher spent most of her time focused on the organization's research portfolio and what their money is being directed at. Aside from common points about the Artificial Pancreas Project and various research avenues the JDRF is exploring, she said that encapsulated beta cell replacement has exciting promise. The JDRF is putting about $25 million into the hopes that research can lead to the beta cells being protected from the immune system attack for at least a year, if not longer. Those beta cells would come from pigs and human embryonic stem cells, she said.
New CGM technology is being announced by the end of May, and the JDRF is also investing in the idea of a dual-chamber pump that would allow PWDs to shoot up with both insulin and another substance — either glucagon, to raise sugars when necessary, or Symlin, a hormone-based aid from Amylin that helps keep sugars steady. But the JDRF hasn't defined the parameters of that research just yet. "We can't do this alone; we have to work together with Pharma and other companies," she said.
Now 41, Andy was diagnosed at age 15 and played college hockey before being drafted and playing for two years with the Detroit Red Wings from 1992 to 1994. He left hockey not as a result of diabetes, but "because I didn't have the talent." Andy ended up in the financial industry and lives in Toledo, Ohio. In 2010, Andy founded Type 1 Rules, a diabetes management coaching program for kids and families. His teachings there are based on three core principles:
- Make diabetes a positive force in your life
- Eliminate lifestyle limitations through successful D-management
- Strive for excellence rather than perfection
Andy describes diabetes as a "very complicated balancing act" that's 95% about emotions and taking ownership, and only 5% about carb-counting and insulin dosing. He personally tests 15-20 times a day, usually in clusters after exercising or eating to get a CGM-style trending picture of what his blood sugars are doing. Andy says diabetes has been a positive force in his life and that without his diagnosis he probably wouldn't have made it into pro hockey.
Complimenting Andy's personal story, Kelly — a CDE at Henry Ford Hospital in Detroit who's in her 38th year of living with type 1 — offered the medical side of the session, presenting tips for PWDs to keep in mind when exercising. For example, she cautioned against exercising if blood sugars are higher than 250 mg/dL because that might actually increase sugars even more. She said it takes 24 to 36 hours for a PWD's body to get back to normal post-exercise, but that chocolate milk actually helps us recover more quickly! The drink sticks with you longer than most, has plenty of water in it, and helps your body respond best after you've lost all the nutrients and such... much better than so-called "power drinks"!
(I'm going out to stock up now. Of course, you probably need to exercise first to get this good chocolate milk effect...)
Katharine Gordon, Novo Nordisk staff attorney for the American Diabetes Association
Katharine spoke about fighting diabetes discrimination at work, pointing out that circa 8% of PWDs are fired as a result of their diabetes, and 80% of all EEOC (Equal Employment Opportunity Commission) complaints last year were disability-related, which is more than race-related complaints. I didn't know that it's illegal for potential employers to ask someone about their health, including diabetes, before an official offer is made. But after the offer, prospective employers can ask for pre-employment physicals or more detailed health questions. Employers may also learn about someone's diabetes if he or she has hypos at work, or requests "reasonable accommodations" as allowed under the Americans with Disabilities Act. In response to a question about whether PWDs should take off their medical alert IDs during job interviews, Katharine and one of the local Michigan attorneys there, a PWD himself, suggested this way probably OK, because after all, there's no reason to "tip their hand when they don't have to." Knowing one's rights at work is important, and more info can be found online at the ADA website.
Other conference topics included: getting the most out of clinic visits, students with diabetes in schools, pregnancy and diabetes, family harmony for PWD spouses, and behavioral issues in type 1.
The lunchtime keynote speaker was Gary Scheiner, longtime type 1 and well-known CDE who serves as clinical director and owner of Integrated Diabetes Services in Pennsylvania, and also hosts the online learning program Type 1 University. He spent about an hour talking about Diabetes and Physical Activity: The Perfect Match and Ultimate Challenge," but sadly I missed most of the presentation (and skipped lunch) to run around and chat with people and cover the event.
As part of our D'Mine coverage, we were live tweeting some of the discussions as they were happening, and those messages can be found at @jdrfdetroitconference. In particular, we were chatting about an issue brought up by pediatric endo Dr. Michael Wood from Helen DeVos Children's Hospital in Grand Rapids, Michigan, regarding the inconsistency in how some pediatric endos keep seeing their patients after age 18, while others send them away to find an adult endo. I wondered if there might be some need for a standard, and that is generating a lively Facebook discussion on the DiabetesMine page.
This was my first time attending, after getting a tip about it from my mom (a veteran type 1 herself diagnosed back in '58). We actually attended together, and it was awesome being able to meet in person the historical endo extraordinaire Dr. Fred Whitehouse, whom she sees and I had the pleasure of interviewing a couple months back. He presented about the past, present and future of the A1C as we'd discussed in our interview.
Aside from the sessions, it was also exciting that a few Diabetes Online Community members were able to make it to the conference! Those attending included Kerri Sparling, who presented at one of the pediatric "beginners" sessions by sharing her story with an awesome touch of humor, honesty and openness; Tim Brand and his wife Heather, along with their two T1 daughters; and D-Mom Andrea Yinger. Not to mention my mom and all the other PWDs who we had a chance to meet and talk to, even if only for a few minutes. Woot for D-Meetups!
I even wore my blue circle pin (supplied by a fellow Indiana PWD and friend), and that generated some additional discussion and advocacy about World Diabetes Day and how we're really all united as part of the same community.
Sometimes the science and research can seem dry and out-of-reach to those of us just living each day with diabetes. But it's really encouraging to attend an event like this and experience the passion of those studying different aspects of this illness and figuring out how they apply to our individual lives.
Through them, I think hope remains alive and I'm excited to see what's down the road!