Nothing is perfect. That can certainly be said for the comprehensive front-page article the New York Times ran this Saturday, April 5, on the high cost of new type 1 diabetes tools. While the story was one of the best we've seen in describing the challenges of insulin dependence and the huge cost barriers that exist for patients in our convoluted American healthcare system, some felt that it actually disses innovation in diabetes tools — portraying things like continuous glucose monitors and talking meters for the vision impaired as frivolous luxuries. Grrr!
Here are some excerpts from the heated Twitter reaction that we caught yesterday:
The upshot, to us, is that this piece by Elizabeth Rosenthal definitely sheds light on important cost barriers and does a lot to raise awareness about the reality of life with type 1 diabetes overall, but it also just as clearly glosses over the huge quality-of-life improvements offered by many of these new tools.
The article makes the argument that updates and tweaks to both insulin itself and to various devices are really nothing more than "planned obsolescence" to boost industry profits. While there may be some truth to that in terms of "bells and whistles" on certain products, the general tone seems quite dismissive of patients' needs beyond getting the insulin under your skin.
Here are the bits that outraged me personally:
"A steady stream of new models and updates often offer dubious improvement: colored pumps; talking, bilingual meters; sensors reporting minute-by-minute sugar readouts...
Those companies spend millions of dollars recruiting patients at health fairs, through physicians' offices and with aggressive advertising — often urging them to get devices and treatments that are not necessary, doctors say. 'They may be better in some abstract sense, but the clinical relevance is minor,' said Dr. Joel Zonszein, director of the Clinical Diabetes Center at Montefiore Medical Center. 'People don't need a meter that talks to them,' he added. 'There's an incredible waste of money.'
What?! Minute-by-minute glucose readings offer just "dubious improvement"? Does this Dr. Z have the slightest idea what it's like to live with a broken pancreas that can set your sugar levels swinging at a moment's notice? And that bit about "talking meters" -- as if they were just high-tech toys, and not vital life tools for those with vision impairment! (Watch this video for the portion on, "Do Diabetes Companies Have a Blind Spot?")
I can personally attest to the importance of what Dr. Zonszein apparently considers trivial, abstract improvements:
1) I use the OmniPod, a tubeless insulin pump that contains a built-in fingerstick glucose meter. This product has CHANGED MY LIFE (I might even say SAVED), because I can now take advantage of the improved control offered by an insulin pump without several feet of plastic tubing hanging off my body connecting me to a pager-like device. I also do not need to carry around a separate glucose meter, making my life more convenient and comfortable in myriad ways. Would I be worse off with my glucose control if I were still on shots? I know myself, and the answer is a resounding YES. Would I be at least 80% more miserable with my diabetes if my only option were a tubed pump? YES. Could that lead to even worse control, and possible depression that needed costly treatment? YES.
2) I use the Dexcom G4 CGM. It has a scroll wheel and a bright color screen and is way more accurate and 1000% more comfortable and easy to use than the last version of that product. Does this add significant Quality of Life value to me as a person dependent on these devices? YES.
3) Over the four years that we conducted the DiabetesMine Design Challenge innovation competition, over and over again people said "the hassle factor" was the thing that made their diabetes care most cumbersome and difficult to master. Incremental improvements like adding a light on a glucose meter so that we can test in the dark make good self-care doable in real life! It's not like adding cupholders to your hot tub, Dr. Zonszein; colors, lights, and sensors applied intelligently to medical devices can often reduce the hassle factor for major improvements in our well-being.
I'm not saying there isn't abuse out there in the sense of overly aggressive marketing sometimes. That happens. But it's wrong to paint a broad picture of pumps and CGMs as "wanna-have gadgets" rather than medical necessities. What a terrible message to be broadcasting just at a critical moment when we patients are working so hard to encourage coverage of these necessities!
There's also the issue mentioned in the above tweet that the article makes it sound like the only real reason to get an expensive pump is so you can splurge on desserts like cobbler. NOT. But the follow-up quote by patient Catherine Hayley in Memphis sums it up nicely: "I'm really able to live how I want. However, the price has increased dramatically."
One other thing that struck me in this NYT article was a mention of glucose test strips costing "just pennies to make." As I pointed out on Twitter, this is NOT what pharma has been telling us for years. They claim that the enzymes, precious metals, chemicals, and other materials that make up the strips, plus the burden of building and maintaining manufacturing plants, drives up the costs. So, it seems someone is not telling the whole truth here...
I do believe the author did a great job of illustrating the core issue addressed: out-of-control medical costs. She quotes Jonathan Lloyd, a pharmacist in upstate New York who's been trying to help manage the coverage of his grown T1 daughter, a pumper currently teaching overseas.
When Mr. Lloyd went to fill the four prescriptions for her supplies this year, he discovered many of them were no longer covered by his insurer, which had switched to reimburse a different brand of insulin and a different metering system, because the insurer got a better deal.
He now faces a dilemma: His daughter could switch to the new type of meter, which cannot communicate with her pump, which would mean her current meter would sit uselessly on her waist. Or he can pay thousands of dollars to buy supplies for the meter she already has. "It's so complicated — there are all these hidden costs, and I'm a pharmacist, for crying out loud," he said.
The article illustrates how it's SO VERY HARD to gain an understanding of what's covered on your policy, no matter how educated and "empowered" you may be. It also touches on the notion that proprietary (or as they say, "customized") diabetes supplies drive up cost and create more access barriers for patients.
We agree with fellow PWD Lawren McConnell, who recognizes that the article has its flaws for sure, but sums it up with this:
We'd love to hear your take.
Update 1: Many others in the Diabetes Online Community are responding to this NYT article, too.
- JDRF's Response, titled "Not Just a Gadget"
- Kelly Rawlings at the American Diabetes Association blog, Diabetes Stops Here
- Manny Hernandez at the Diabetes Hands Foundation
- A comprehensive open letter by Kelly Close, Adam Brown and Nancy Liu of DiaTribe
- Bennet Dunlap at YDMV
- Kerri Sparling at Six Until Me
- Kelly Kunik at Diabetesaliciousness
- Tom Karlya at Diabetes Dad
- Stacey Simms on her personal diabetes blog
- Laddie at Test Guess & Go
- Quinn Phillips at the Diabetes Self-Management blog
- Sarah Kaye at Sugabetic
- Leighann Calentine at D-Mom Blog
- Rich over at his personal blog, Rich the Diabetic
- Dana Lewis over at Scott Leibrand's blog
Also, follow the JDRF-inspired Twitter hashtag being used for this discussion: #NotJustAGadget.
Update 2: On April 11, 2014, the New York Times published a response to the diabetes community outcry. They claim their journalism was solid, but the article's headline and "a few of its language choices could have been better." Ya think?