After much anticipation we had our first pump “class” today, which turned out to just be a sales pitch for the Medtronic Revel. I did not actually learn anything I didn’t already know, so that was kind of a letdown although, in fairness, I have to say I was probably the only person in the room besides the rep for whom that was the case. Yes, I am that anal and have the read the internet that much.

The upside was getting to see and touch the pump and infusion sets and grill a real live person with questions.  The rep was very nice and knowledgeable. She was not a diabetic herself but has a sister with Type 1. She was also very definitely a salesperson. There was a lot of “we rule” and “Animas sucks”.  That is really annoying as a parent because we are there to make a decision about a device upon which our daughter’s life will depend daily, not to care about their business competition. I personally would like to see medical device sales limited to the same strictures as journalism; that is, pure unbiased reporting of the facts. I know, I’m dreaming.

So. The Revel is very, very similar to the Ping. It’s a small device about the size of a pager with only a couple of buttons on it. It has a simple black and green screen that is menu-driven. It’s a bit like using a really old computer. Or programming in Cobol. It connects with a tube to an insertion site on the body. One cool thing that happened was that a youngish boy about middle school age volunteered to let her do an insertion on him. He chose to have it on his stomach and didn’t flinch a bit. He said it hurt less than a finger stick. After witnessing this, the newly diagnosed 7 year old girl couldn’t allow herself to be one-upped so she volunteered for it as well. She claimed she couldn’t even feel it.  Kids are so stinking brave and amazing. Especially Type 1 kids

It was a relief to see that the pump installation isn’t a big deal. The Revel has a cool infusion set called the mio that directly rivals Animas’ inset. This device is so awesome for kids because it’s colorful and neat and, most importantly, looks NOTHING like a needle. It’s a round bobble that you set against your skin and click. That’s it – when you pull the bobble away, the tube is already inserted in your skin and there’s nothing left to do but plug it into your pump. Simple and not scary. I’m loving it.

There was also some valuable talk about CGM (Continous Glucose Monitoring) which we are becoming more and more interested in. The rep was absolutely adamant that CGM must become the standard of care and is invaluable in the treatment of diabetes. She noted a landmark study that was published last month in the New England Journal of Medicine demonstrating that CGM use in pediatric patients substantially improves A1C without increasing risk of hypoglycemic events (going low). We also were told yet again that Kaiser won’t cover it unless our control of Ainsley’s diabetes is so poor that she is regularly having seizures. Fantastic.  Out of pocket, a CGM runs between $500-800 but it’s the monthly costs that will kill you – about $300. Carwash, anyone?

Our endocrinologist tells us that he expects it to become the standard of care within the next year or two, so maybe we will just wait it out.  Her body is awfully small still to support two embedded devices. On the other hand, every day we see more and more how much a CGM could completely change our treatment of her. Example: I test her before breakfast and she’s got a good number. I count her carbs and dose her accordingly. I test her a few hours later before snack. She’s high, so I give her a zero carb snack (meaning zero blood sugar impact). I test her an hour later when she’s lethargic and find that she’s now low. With CGM I would have seen at the pre-snack check that she was high but coming down fast and I would have known to give her a few carbs to help balance things out. A finger stick is a snapshot and CGM is the video.

In the end, I wouldn’t cry if we got the Revel. I’m still very interested in the Animas meeting. I was discouraged, however, when I asked the rep today what the process looks like from here if we decided to buy her pump. She looked me dead in the eye and said, “You will have to advocate very strongly for your right to have a pump and in a timely fashion.” A part of my brain started screaming,  ”WHY?$&*#” and hasn’t stopped since. There are about a billion studies available showing that an insulin pump is the best way to control our child’s diabetes. Why in the name of all that’s holy would I have to convince the medical establishment of that at this point? I don’t. It’s an insurance thing.

When I got home and registered our team for the Walk For the Cure, I checked YES, please send me information on lobbying the government for diabetes funding and reform.