Off the Dial

Day of Diabetes

My #dayofdiabetes was pretty typical. Which makes me laugh a bit. If you had told me before type 1 diabetes that I’d think this was a normal day…

Some highlights:

Normally, I don’t hear from Benny during school unless something is really off. However, this week we’re checking out a service that texts blood sugar numbers to our phones. It’s also interesting to me how after only 4 months with the CGM, I miss it if he doesn’t wear it even for a day.

After school I usually go through his meter to check numbers and see what supplies I need to refill.

The day ended with a last minute scramble:

Benny went to bed soon after. Slade usually does our last, late night check.

#dayofdiabetes is an informal way to share information from within the Diabetes Online Community, itself a pretty informal group of people on social media. Anyone is welcome to use that hashtag and bring us along on their journey.

 

Walk Time!

This Saturday is the JDRF Walk to Cure Diabetes.

Click here to learn more about our team and make a donation (if you’re so inclined).

Thank you!

Fact Check: New York Times

When I saw this weekend’s New York Times article, “Even small medical advances can mean big jumps in bills,” I thought, “Hey, that’s us!”  My son was diagnosed with type 1 diabetes more than 7 years ago and I’m still shocked at how much our supplies cost, even with health insurance.  How disappointing to read an article that, instead of educating, misses the mark on very basic facts.

I was stopped in my tracks by this sentence:

Since pumps are complicated to operate, young children cannot use them.

What? My son was diagnosed with type 1 in December of 2006. He started on an insulin pump in July of 2007. He was two years old.  Pumps are complex, but so is insulin dosing with a syringe. No one expects a toddler to draw up and deliver his own insulin shot unsupervised.

A simple Google search of “toddlers diabetes insulin pumps” shows information from endocrinologists and diabetes groups as well as articles in medical journals.  It’s not anecdotal. It’s fact.

Then these conflicting statements (separated by a few paragraphs):

A steady stream of new models and updates often offer dubious improvement: colored pumps; talking, bilingual meters; sensors reporting minute-by-minute sugar readouts. (boldface is mine – these sensors are called continuous glucose monitors)

The pumps are designed to work with yet another new device called a continuous glucose monitor — bought separately — that could be lifesaving for some patients with unstable diabetes, because it sounds an alarm and suspends insulin flow if it detects that blood sugar has dropped dangerously low, which can happen during sleep.

So is the CGM a “dubious improvement” or is it potentially “lifesaving?” Confusing and presented with incorrect information.

My son started on a CGM in December not because of crazy-out-of-control blood sugar spikes, but because the research shows a CGM can help improve and tighten control. Since we started, my son’s A1C has come down by almost a full point, which is significant. It’s also alerted us to many overnight lows that otherwise might have been extremely dangerous.

I could go on about other parts of this article that made me bristle. The above mention of talking meters, I’m sure very much needed by people who are blind (vision loss is a potential complication of diabetes) and the implication that these innovations (many of which are dismissively called “gadgets”) are only needed so people with diabetes can eat dessert instead of improving quality and length of life.

I’m frustrated by this muddle because I agree with the reporter’s premise:

But as diabetics live longer, healthier lives and worries fade about dreaded complications like heart attacks, kidney failure, amputations and blindness, they have been replaced by another preoccupation: soaring treatment costs.

My 9-year old walks around with about $12,000 worth of equipment on his belt.  We’ve had many changes and ups and downs with insurance. We know that at the start of every year, we will pay our full deductible within two months.  We will pay more throughout the year for insulin, test strips, emergency Glucagon, pump supplies and now CGM supplies. We’re lucky we can afford to do that.

We all need to look at these costs carefully. We need to question drug and medical companies as well as our government about how health insurance and medical pricing works or doesn’t work in this country. We shouldn’t be afraid to look oversees for success stories or to learn from failures. We are way overdue for these conversations in diabetes care and for managing other conditions.  I’m grateful that people saw an article about the costs of diabetes on the New York Times front page – that’s wonderful. I just wish the reporter hadn’t been wrong about some very basic facts.

I’m going to hear from friends and relatives this week with questions about how we care for our son (“But the New York Times says he’s too young for a pump.” “He doesn’t really need that CGM, right?”). I can handle that. But I’m sad the chance for a conversation about costs may be pushed aside over reporting mistakes that could have been prevented with just a little bit of research and editing.

Disclosure: I occasionally write and speak for Animas Corporation, a company that makes insulin pumps and supplies. This blog and website are independent of my agreement with Animas.