Pumps

Instinct CGM Review

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It’s now been 6 months since my son switched from Medtronic Guardian 4 continuous glucose monitors (CGMs) to Abbott’s Instinct CGMs. This has been life changing for our family. In the good way.

The primary purpose of a CGM in my son’s therapy is to prevent overnight lows. It’s been years, but he twice had seizures due to extreme lows that he did not sense. (Likely just too sleepy after a rough day of being twenty-something.) He now lives alone 20 minutes away, but none of us feel it’s appropriate for him to sleep alone without a working CGM.

Guardian CGMs are good for one week at a time. This meant that each weekend my son would come home one night and start a new one. The odds were about one-in-five that any given one would be bloody or otherwise wouldn’t start up and offer usably-accurate numbers. Every few weeks I would sleep at his place Sunday night while we waited for a second CGM to settle down and offer good numbers.

The Abbott Instinct CGMs seem to “install” more predictably, dropping that one-in-five failure rate to more like one-in-eight. They do, indeed run for two weeks, so we have a weekend “off,” not having to worry about a new CGM starting or not. Between the higher success rate and the longer life, our stress level has plummeted.

Are they perfect? No. Abbott CGM’s really can’t be calibrated – biasing subsequent readings based on finger stick results. Abbott famously suffered a lawsuit for similar sensors that chronically read low. A given Instinct sensor may read nearly 15 points low for most of its life (in our experience) making it unsuitable, we feel, to put the pump into “auto” mode during the day, but it’s more than accurate-enough to allow the pump to suspend delivery overnight to avoid lows.

We’re thankful that technology marches on and that Medtronic has accepted that they may not be the best at everything. In addition to making their latest pumps compatible with the Instinct, they’re still compatible with Guardian 4’s and there’s another 6 day sensor called Simplera.

Instincts are expensive at Medtronic and they have a mixed record at getting insurance to accept these “hardware” based expenses. Thankfully, Express Scripts now has them in stock and they do a better job at working the insurance side.

Good luck if you go that route! Get in touch if you have questions!

Insulin

Making the Switch – Some Good News

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Just a quick post.

Again, this site does not intend to give medical advice, but insights and anecdotes from our own family’s experiences managing type 1 diabetes.

My son turned 26 and had to go on a new health care plan – the one offered by his employer. Through the convoluted business practices of the insurance companies involved, a different brand of insulin was on the “formulary,” the list of approved medications. These lists are seldom determined by medical efficacy, but instead because of so-called Pharmacy Benefit Managers, the people who “negotiate” with the pharmacy firms. They approach the drug makers with the question, “how low a price would you give us if we guaranteed that all of our policyholders have to buy from you instead of your competition?” It is either the most un-American aspect of the healthcare system, or the most uniquely American aspect of healthcare, depending upon your point of view, I guess.

At any rate, my son had to switch from Eli Lilly’s Humalog to Novo Nordisk’s Novolog. You may recall that the fast insulins basically involve molecules that are already more broken down than human insulin. In these two competing products, the molecules are a bit different, but more importantly, the preservatives and other ingredients are different.

The good news is that the switch between brands did not cause any significant problems. My son’s blood sugar management had been very good with Lilly and has continued to be good with Novo Nordisk. It’s still a sin that insurance companies are allowed to nullify your Doctor’s best judgement and force you to change medications, but in this instance, anyway, things seem to be going okay. The real problem with the new plan is the short supply they allow at one time. That’s another post. Best of luck if you have to switch insulin under similar circumstances. Let us know how it goes!

Pumps

Love ’em & Hate ’em – Continuous Glucose Monitors

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It may be that CGM’s – Continuous Glucose Monitors – are the area for greatest improvement in diabetes management. CGM’s involve a subcutaneous probe poked about 1/4 inch into the skin, essentially in the same fleshy layer into which insulin is injected. The probe is a soft plastic tube rather than a needle in the skin. Knowing how it resides in a fluid layer under the skin, we refer to this probe as the “wick.” It connects to an electronic device we call the “puck,” via little electric traces – just as a glucose tester connects to glucose strips. The puck has a bluetooth-style connection to an external monitor; either an insulin pump or a separate handheld device. Used with a pump, the system reports out blood glucose about once every 5 minutes, hence the term Continuous.

No matter who your device manufacturer is, they have a high monetary motivation to keep you happy with their system, so they liberally provide replacement CGM probes without additional cost.

This ability to collect ongoing data allows a sufficiently sophisticated pump or other monitor to make predictions about future blood glucose. Having collected user data for years, now, therapy manufacturers have developed sophisticated algorithms to predict low blood sugar and predict response to insulin under different circumstances.

When Medtronic first announced the CGM and pump combo used by my son, they branded the predictive app algorithms with IBM’s “Watson” AI brand. By the time the system was released, this branding was eliminated. Given our experience, I think IBM decided they didn’t want their brand possibly sullied by ultimately UNpredictable real-world results! Even with regular calibration, a CGM can easily be 20 to 40 points off. Even the best algorithm will fail given faulty inputs. Just ask the crew from 2001: A Space Odyssey!

The main point of this post is to warn you about the luck we have “installing” these CGMs. They get loaded into a spring-cocked “serter,” and poked into the abdomen – or for some folks, the back of the arm. As the wick goes into the skin, it is accompanied by a steel needle providing the structure for the flimsy wick to poke through. Once the needle is withdrawn there is sometimes bleeding. Although one can stop this bleeding by pressing on the external plastic frame for a period of minutes, the bleeding itself may compromise the install. The wick is not really designed to reside in free, possibly coagulating blood, and so it’s hard to bring the CGM to proper calibration. All this is to say that we have to discard nearly half of these CGM probes, despite our research into bleeding avoidance! No matter who your device manufacturer is, they have a high monetary motivation to keep you happy with their system, so they liberally provide replacement CGM probes without additional cost. Still, having to address a bleeding wound can be dispiriting, to say the least.

Another company, Dexcom, is currently marketing their CGM touting how long it can go without calibration – how many “finger sticks” it can eliminate. We have no experience with Dexcom, and it may indeed need little calibration, but in any tradeoff between accuracy and fewer finger sticks, WE choose accuracy. A sharp lancet, calibrated to the right depth, really doesn’t do lingering damage – so long as the fingertips are adequately cleaned with an alcohol swab! Given the long-term and short-term risks of insulin therapy based on inaccurate numbers, drawing a little blood is, so far, a worthy tradeoff.

Now, if the Dexcom has a higher insertion success rate, that’s another story. As Medtronic customers, we understand that the Dexcom probe goes in diagonally, so that part of the experience may be superior! We’re truly grateful to Medtronic for helping to keep our person with diabetes alive, so we nag them about few things. However, we believe the “closed systems” operated by device manufacturers…the non-interoperability…is a critical weakness, if not a moral offense. Let’s be magnanimous about the way we put this, rather than run anyone down: if Dexcom has a superior CGM but Medtronic has a superior pump, not being able to put these superior solutions together risks lives. We believe that the profit motive – wanting to guarantee sales of a whole system – gives all of these manufacturers a vested interest that may compromise their decision making!

So, algorithms aside, there’s room for improvement just getting data to the system. CGMs are literally lifesavers, alerting one to low or even pending low blood sugar. We would love to share the experiences of Dexcom customers, too, so – get in touch if you have a story to tell!

Insulin

Make Yourself Heard

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A couple of weeks back Congress approved a temporary extension of funding for the Special Diabetes Program, which funds studies at the National Institutes for Health. It funds programs known as TrialNet and TEDDY, along with other research related to diabetes. We call and tweet our Washington contingent regularly as diabetes funding reaches the floor, and hope you do the same.

To the extent that there is a community of those with Type 1, there is a grim joke among them about how a cure is always only 5 years away. A press release goes out…there may be a couple of anecdotes that make the news, but there is seldom significant progress toward “curing” Type 1. This is a shame, because – as an autoimmune disease – progress in understanding and treating Type 1 should advance cures for millions and millions with various diseases.

We’re actually pretty satisfied with the advocacy efforts directed toward research. It seems it’s easier to get Washington to spend money than it is to get Washington to help you save money.

Don’t expect the American Diabetes Association or JDRF to put their full effort into these pricing issues, as they EACH get more than one million dollars per year from Lilly. ADA proudly recognizes both Novo Nordisk and Sanofi as big contributors, as well.

We want to feel good about the companies that create the compounds and devices that keep our kids alive, but it’s hard to accept that there are good people involved when the price of good insulin has have gone up – UP – by a factor of 13 times, from $21 in 1996 to $275-ish dollars in 2020 – even as patents have expired and competitors have entered the marketplace! As they say about much of capitalism, the system’s not broken, it was built this way.

Sure, pharmaceutical companies have “discount cards” and various “if you can’t afford your prescriptions, Merck is here to help” sort of programs. Eli Lilly’s average income on a unit of insulin likely ISN’T 13 times what it was in 1996. Our guess is that these discount programs are all written off as charitable or advertising expenses, lowering their tax bill. According to Public Integrity, on $600 million in US income in 2018, Eli Lilly paid zero taxes. Zero. In exchange for Lilly being able to write off $240 per vial in offering a $35 price voucher, some individuals find themselves paying $275 in some circumstances. This complexity is killing people an driving American families to medical bankruptcy!

Don’t expect the American Diabetes Association or JDRF to put their full effort into these pricing issues, as they EACH get more than one million dollars per year from Lilly. ADA proudly recognizes both Novo Nordisk and Sanofi as big contributors, as well. Frankly, the AARP is the best advocate for insulin prices we’ve seen, and – surprise – we couldn’t immediately find any evidence that insulin companies are among their donors.

This post is starting to ramble. I mean to say, that insulin prices are so obscene, that it should be an “easy win” for the non-profit diabetes community to advocate for better retail prices. Not just Medicare prices accessible to some, not out-of-pocket prices for those with good insurance – the base retail price accessible to all. Again, the system isn’t broken, it was built this way. Still, you may encounter a sympathetic legislator and change the world if you reach out faithfully. Good luck to all of us.

Diet, Insulin

Seasons’ Change

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Elsewhere at Type1News you’ll find information about how blood glucose control can change over the course of a single day. One of the final pieces of the puzzle has to do with changes over a much longer timespan – over the course of a year.

In Spring a young man’s fancy lightly turns… Tennyson observed, and most of us observe a change in our metabolism as the days grow longer. Given that insulin requirements are closely tied to metabolism, there is bound to be a need for adjustment as the seasons change. They just may not be as you expect. Please read this particular article with caution, as your results, as they say, may vary.

The person in our household with Type 1 diabetes is still in his 20’s, and so these seasonal effects are still fairly pronounced. I think most of us are aware that heavy exercise can make one’s cells capable of burning some carbs in an absence of insulin. Because of this, one might think that less insulin is needed in the spring. We’ve actually found the opposite.

It seems that digestion is affected by these metabolic changes more than the body’s ability to burn carbs. So, in the spring, we’ve found that more insulin is necessary – and faster – after meals. In our case, this adjustment is made by altering the calculated carb-to-insulin ratio. Each season, spring and fall, we spend a few days nudging this ratio until we’re again getting good blood sugar control. The change comes on pretty quickly in the spring, over maybe 10 days and then there’s no further progression. In the fall it seems to take just a little longer, but it is remarkable how quickly the metabolism slows back down for winter.

Any change in the insulin ratio can be more complex to implement than you think. A change in ratio from daypart-to-daypart is a prescribed by our endocrinologist as a preferred method of pump managment. Some of these changes are probably legitimate differences in daily metabolism, but some of these adjustments seem to be to “trick” the pump or alter the curves for best result. Overlay an overall ratio change to this system, and the results can be unpredictable. Approach these seasons with caution!

In addition to the normal circadian effects, be on the lookout for seasonal allergies. Inflammation caused by allergies raises blood glucose, sometimes fairly dramatically, resulting in some of those surprise mornings near 300 that we hate to see! Antihistamines may not only address allergies you experience, but they may also suppress a general background inflammation you were unaware of, resulting in dangerous lows. We try to make extra time for mid-night glucose checks and calibration in these tricky times of year.

If you go into your first year of diabetes management expecting these effects, you’ll stay safer and learn more that first year, so the subsequent years can be more familiar. As always, good luck. Our thoughts are with you.