NewNowNext

Laura Billetdeaux

One of the best meetings of the year makes us all feel young again

From the moment her son was diagnosed with diabetes, Laura Billetdeaux was sharing her thoughts and taking advice on the website Children with Diabetes, a now-large online forum for families with diabetes in their midst. From a small town in Michigan, she wasn’t aware of any other families nearby dealing with the same challenges. She announced on the forum that her family would be going to Disneyworld over the summer and would anyone like to join them; 550 people came.

This was in 2000. Now, the meeting has grown immensely, and we can tell you firsthand that it’s fabulous. The Friends for Life conference, at Disney’s Coronado Springs resort from July 11 to July 15, is expected to bring in 2,500 people this year of all ages. We strongly urge our readers to consider going – we suspect it will be sold out by early June and so if you can possibly go, get your tickets now! (www.childrenwithdiabetes.com). This is an incredible place to learn about diabetes.

Although the conference has grown every year, this is the first year it will actually sell out, mainly because word has been spreading about what a fantastic experience it is. From this point on, Billetdeaux thinks, the annual meeting will sell out by early summer.

At diaTribe, we sometimes call this meeting a “mini-ADA” – ADA being the American Diabetes Association annual meeting, the largest such meeting of the year globally. We do so because this Children with Diabetes meeting is absolutely the place to be – speakers are first-rate, information is cutting edge, and the exhibit hall is massive. But there is one catch – “ADA is for professionals, and we’re not,” says Billetdeaux, “If you think about why the conference is so successful it’s because neither Jeff Hitchcock [the founder of Children with Diabetes] nor I are pros – he’s a dad and I’m a mom – that’s how it’s always been, we have always been concerned about children and families first and foremost.” Yes, this meeting is about kids, family, fun, managing diabetes better, and confronting diabetes as a community. But “people should understand that this is not just for kids,” says Billetdeaux, who says that many of the kids who started with CWD are now 25 years old, adults – and we can attest that many adults attend who don’t have children with diabetes but perhaps (or not!) were one themselves.

Speakers we would highlight include:

• Dr. Kenneth Moritsugu, the US surgeon general, whose keynote address Billetdeaux may be most excited about. She plans to put some teens, college students, and parents on a panel with him, and is interested in how he responds to their hopes for and concerns about diabetes;
• Joe Solowiejcyzk, a family counselor focused on diabetes education;
• Paul Madden, of Animas and formerly the Joslin Diabetes Center;
• Drs. Bruce Buckingham and Francine Kaufman, both very well-known pediatric endocrinologists;
• Dr. Irl Hirsch of University of Washington;
• Dr. Richard Rubin, a psychologist and diabetes educator, and outgoing President of Health and Education at the ADA;
• Dr. David Harlan, the Chief of Islet and Autoimmunity research at the NIH;
• Dr. Aaron Kowalski, who leads the Artificial Pancreas Projects at the JDRF; and
• Dr. Henry Anhalt of the Saint Barnabas Medical Center in NJ.

Two talks in particular we’re excited about are Dr. Henry Anhalt’s “Why We Pump” and Dr. Irl Hirsch’s “Understanding the Ups and Downs of Blood Sugars.” And there are many, many more that look stellar. These are truly “the best of the best in the diabetes world,” says Billetdeaux – we absolutely concur.

Some of the other features include an inspiring banquet (sign up for registration the same day – the banquet will sell out soon), a day in Disneyworld with a doctor and educators on staff, free childcare for children under six, and youth divided into groups from elementary age to college age to participate in activities like an information scavenger hunt in the exhibit hall. “It’s such a positive experience for everyone, whether for a child seeing all this love and support or a doctor or researcher feeling that this is why they do what they do,” Billetdeaux says. For those who can’t make it to this meeting, there are regional conferences as well: for more information on both, please see www.childrenwithdiabetes.com.

New Animas Pump

Pumpers, be alerted! Last week, Animas launched the new Animas 2020 insulin pump, now the smallest traditional pump on the market. Some of the 2020's features include a backlit organic light-emitting diode (OLED) screen, which is supposed to deliver brighter and clearer images than traditional pump screens, and greater precision of dosing (the minimum adjustment increment will be 0.025 U/hr). We think these features could be particularly helpful for young children or anyone who is highly sensitive to insulin, and the improvement to the display screen is a benefit to folks with decreased vision. We know that for pumps, what's right for one pumper isn't for another, but it's terrific to see new alternatives, that's for sure! See more.

Continuous Sensors Approved for Children

Last year, the FDA approved Medtronic’s Guardian REAL-Time System, which reads glucose levels in the interstitial fluid every five minutes. But the device was only approved for adults 18 and over. Great news for any diabetic who can vote, but bad news for everyone else (and their parents).

But youth has now been served. On March 12, the FDA approved new REAL-Time (CGM) devices for children and adolescents ages seven to 17. Medtronic’s REAL-Time CGM will soon be available in specifically designed pediatric models of the MiniMed Paradigm REAL-Time System and Guardian REAL-Time System.

Steve Sabicer, a Medtronic spokesperson, says that CGM therapy combined with an insulin pump is the most aggressive and effective diabetes therapy available. “Parents will sleep better at night knowing that their children have added protection against dangerous high and low glucose levels,” Sabicer says. According to the company, Medtronic REAL-Time CGM therapy can reduce the duration of hypoglycemic events and can lower A1c levels by as much as two percentage points.

We bristle a little at the two points, since that wasn’t the average reduction, although some patients at very high A1c’s did see a reduction like this. We actually think it’s not all about A1c, as we have learned at meetings over the years and as Dr. Irl Hirsch told us in diaTribe #2 – it’s also about improving glycemic variability.

Of course, young patients will still face some of the same hurdles as their older counterparts. Insurers do not cover CGM therapy, so diabetics must pay out of pocket. What’s more, it remains to be seen how many grade-schoolers will want to wear a complicated sensor, which – like any new technology – requires time, patience, and trouble shooting. But at least the regulatory hurdle has been cleared.

Another hurdle for Medtronic had been the large size of the transmitter, but this also has seen vast improvement. We just discovered at Diabetes UK in Glasgow, Scotland, that the new mini-LINK transmitter has started shipping already!

CGM remains far from perfect, as we wrote in Test Drive in an earlier issue, but of course both pumps and blood glucose monitors took a long time to develop a big following; so as long as reimbursement emerges, we think CGM could still ultimately help many patients.

Give My Regards to Byetta

Delta Burke is an emmy-nominated Broadway actress who has also appeared in movies like What Women Want and TV shows like Boston Legal and most notably Designing Women. She’s now weighing in, literally, on the benefits of Byetta (see our Learning Curve on Byetta). She’ll be joined by the renowned Diabetic Chef Chris Smith, a Bally’s Total Fitness Trainer, and one of our very own diaTribe advisors, Virginia Valentine, who takes Byetta herself for her type 2 diabetes. The team started in Boston on March 17 at the New England Spring Flower Show and plans to hit Atlanta’s Dogwood Festival, New York’s Third Avenue Merchants Spring Expo, Philadelphia’s Rittenhouse Row Spring Festival, San Francisco Bay Area’s A La Carte and Art Festival, Washington DC’s National Capital Barbecue Battle, Chicago’s Taste of Chicago, Dallas’ Taste of Dallas, Michigan’s Ann Arbor Street Art Fair, and Los Angeles’ Ventura County Fair. While Amylin Pharmaceuticals, the maker of Byetta, has regaled physicians and many educators with the benefits of Byetta, this is really the first time they’ll be telling you directly! We’ve heard some excellent success stories about Byetta and its ability to reduce post-meal glucose, A1c, and satiety (or hunger), not to mention your weight, and we know the drug can be quite powerful for the right people – at last glance, well over half a million people in the US alone were taking Byetta and many in Europe were ready to try it. See more about what Amylin and Delta Burke have to say at www.ByettaLetsTalk.com.

photo: Daniel Belkin

These Bags Really Pack a Pouch

Even as a 13–year-old, Jennifer Dorn knew that there could be a perfect bag, one that could be both a purse and a “diabetic pack.” Now in her late 20s, Dorn has founded a company that marries the pack with what we think is a very stylish everyday handbag. It also combines a slightly larger pack with a trendy messenger bag, for men or women. Both items come with many pockets for any kind of everyday gear as well as a detachable medical pouch – with places for a meter, a lancet, a lancing device, two kinds of insulin vials, test strips, used test strips and so on, including a watertight ice pocket to keep insulin cool. The handbags come in black, ruby, and chocolate and the messenger bags come in navy and gray. Marrying a pack with a purse can be difficult, since many women have different purses for different needs – thus, the benefit of the detachable pouch. And Dorn wants to expand: her next design will be a larger “mommy bag.” See the designs for yourself at www.adorndesigns.com.

In diabetes technology, the downsizing continues.

Two new products - a transmitter for a continuous glucose sensor and glucose meter - have recently come out, and their principal advantage is their small size. How do we know this? Because "mini" is in both of their names.

We believe that size does matter in these devices - smaller is usually better, certainly less cumbersome - and we applaud these efforts.

First, we have Medtronic's MiniLink Real-Time Transmitter, which is part of its Guardian (R) REAL-Time continuous glucose monitoring system. In general, a transmitter snaps into the glucose sensor after the sensor is inserted beneath the skin and sends glucose readings to a monitor every five seconds. The MiniLink, however, is about one-third the size of previous Medtronic transmitters (it's about the size of a quarter), and it's white instead of black. The actual insertion is very close to the sensor, rather than dangling at the end of a "wire" as before (Bluetooth technology is involved). It's also waterproof and, for the first time, can be recharged.

The MiniLink definitely looks better, and is less conspicuous, than the previous transmitter, and that might make it more attractive to younger patients. The design has no bearing on the transmitter's accuracy, which remains a drawback for some patients.

Next, LifeScan has introduced a slimmed-down version of its Ultra glucose meter - the UltraMini. All meter companies say their products are small, but this one is truly tiny. It's 4 ¼ inches long, 1 ¼ inch wide, 2/3 of an inch thick, and weighs about an ounce.

In other words, it's narrow, discreet, and easy to handle, and for these reasons we love it. We know of many diabetics who've had to test their blood sugar in difficult places - in a corporate board room, at a Texas Holdem poker game - so small meters can be advantageous. The UltraMini is also one of the cheapest meters around, about $20 (strips used for this meter are the same used as for the Ultra2 and UltraSmart).

Some “hyper-intensively” managed patients may see some disadvantages. The meter has a relatively small memory, only 50 test results, and they cannot be downloaded - clearly not good for patients whose doctors use meter downloads to guide care, or for patients who do it themselves. Do you do this? Please take our two-question poll and we'll get back to you about how important this is! You will also be entered in a drawing to win a free Adorn bag, as seen in NewNowNext!

Perhaps some day we'll get the best of both worlds - small and multi-functional - but for now even small is a nice option.

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