Here’s my take on last week’s kerfuffle concerning the NY Times article about diabetes improvements and their high costs:
That’s all of my diabetes stuff . . . and that doesn’t include the pump and continuous glucose monitor (CGM) transmitter that I’m currently wearing. Over the last fifteen years, my insurance company, employer, and I have been a mint for pharmacies and corporations in the diabetes technology and biological pharmaceutical areas.
If you look closely you’ll see the “consumables” on the right-hand-side of the picture: test strips, infusion sets, reservoirs, CGM sensors, batteries, lancets (*ahem*), alcohol swabs, and various tapes and preps. In the left foreground are the “just in case” spares that I carry with me everyday: a pump, meter, reservoirs, infusion sets, syringes, and all of the things I might need to use these things—inserters and chargers mainly—whether I’m at home or away.
Everything else is just stuff. Maybe I used it once, but nearly as often it just came with something else as either a freebie (lancets with a new lancing device) or as something billed to my insurance company when I got a new device. I keep it because it’s useful once or twice a year or because (as a disease that can instantly demand your full, life-or-death attention) diabetes really encourages preparedness. But somebody paid for all that stuff, even if it goes unused.
The observant reader will notice two insulin pumps in there: the last Medtronic 512 I used before getting my Medtronic 522 about five years ago and the most recent 522 I wore before getting the 530G that I’m wearing right now. It’s been beneficial to have a second pump; the first one sometimes breaks, and I also use it along with my regular pump on days when I compete in triathlons. But why three? Unlike the 512, the 522 supported CGMS. Unlike the 522, the 530G supports the Enlite sensor. Otherwise, they’re pretty much the same with minor tweaks.
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Is it medically necessary to have upgraded? No. Have the expensive technology upgrades improved quantifiable health metrics, such as A1c or the number of lows and highs I have? No. Have they improved my overall quality of life with diabetes? The 522 certainly did, since it brought me into the world of CGM; the 530G hasn’t been nearly as impressive or transformative. (In fact, it’s been a bit of a disappointment, but more about that another time.)
The meter story is similar, except my out-of-pocket expenses are higher, and each time I’m sent a “free” meter, the test strips fall into the ultra-premium, high deductible tier of my pharmacy benefit. So, I’m using the medium tier test strips which work with the meter that sends BGs to my pump. If I were a person of lesser means, I probably wouldn’t care enough about that integration to pay extra each month.
(By the way, this is just a small collection of the meters I’ve had over the years. I’ve lost some, broken one or two, and given away a half-dozen or more to coworkers who sent them home to type-2 parents in India, China, and Russia.)
The impact of cost probably holds just as true for insulin as it does for test strips. I get good results from Humalog, but it’s not the only insulin analogue out there, and Novolog costs less for some people. I would consider using it if it meant significantly lower out-of-pocket expenses. Of course, there is a lower-cost option currently available: “regular” (non-analogue) insulin. I know a couple of pharmaceutical insiders who lament that Humalog doesn’t have enough of a difference in action compared to regular to justify its higher price. But for me, their action curves are different enough in rapidity of onset and shorter overall action to be worth it.
If you were looking in from the outside—perhaps as someone who pays more out-of-pocket than I do or as a coworker who shares some of the shared burden of our insurance pool or as a health economist—would all of this seem like money well spent? I find that debatable. And I think that’s the point that’s been lost in the DOC about the NYT article. Sure, I disagree with it on the value of insulin analogues and CGMS, but I think it raises interesting points and questions that we can’t ignore:
- New diabetes “improvements” often aren’t based in medical necessity or add only marginal value when you consider them based on clinical indicators. (This is sadly true for a lot of medical “innovation” these days.)
- A lot of recent research and costly new developments—incremental changes to pumps, CGMS, test strips that use less blood, integrated devices, and better insulin analogues—are critical parts of various “artificial pancreas” projects. We’re developing a very expensive “cure.”
- Many people with diabetes (type-1 or -2) have trouble affording the basics, and many more have large out-of-pocket expenses for the durable goods and consumables that comprise artificial pancreas solutions. Are we developing solutions that only some of us will be able to afford?
- As people impacted by this disease, we naturally want all of the newest things that might make our lives easier, even if the research hasn’t proven its cost-effectiveness yet. How much can we really expect the other people in our insurance pools to contribute for this stuff? Where do lower cost options fit? Will we accept people suggesting that we reconsider or who flat-out tell us “no?”
- How should we effectively communicate our need/justification for these things to people outside our community? And how can we handle pushback from people who justifiably question the value of the stuff that isn’t strictly necessary?
- How can we in the community help drive down prices for the stuff we need and use?
- What are ethical/legal ways of “redistributing” high-cost diabetes technology once you’ve upgraded or switched vendors?
So, dear readers, what do you think?