Catherine Price (www.catherine-price.com) was diagnosed with Type 1 diabetes when she was 22 years old. She has written for publications including The Best American Science Catherine Price is a professional journalist who was diagnosed with Type 1 diabetes when she was 22 years old. Her work has been featured in publications including The Best American Science Writing, The New York Times, Popular Science, The Los Angeles Times, The San Francisco Chronicle, The Washington Post Magazine, Salon, Slate, Men’s Journal, Health Magazine, The Oprah Magazine, and Outside, among others. A graduate of Yale and UC Berkeley’s Graduate School of Journalism Read full bio

UPDATE: Please Help Arizona’s Legislature Protect Poor People With Diabetes

Update (Monday 3/31): Urgent action required AGAIN — please help!

My celebrations may have been too early — whereas the @AZHouseGOP made the wise decision to reinstate insulin pump coverage for adult Medicaid recipients in Arizona, their colleagues in the Senate (@AZsenateGOP) appear to be on the verge of stripping it back out. 

More specifically: the Senate president wants to strip out all the health-related amendments added by the House — including the part about insulin pumps. The full Senate may make its decision within the next day or two — if not later today (Monday 3/31) — so time is once again of the essence. (They’re not targeting insulin pump coverage directly, so we can still be positive and constructive; they’re just trying to take out what they consider to be “optional” services included by the house. Because living with diabetes is like, totally optional. ) 
 
Ugh. 
 
Anyway, apparently our efforts with the house generated thousands (yes, thousands!) of tweets to the legislators vocalizing our support — and presumably really made a difference. 
 
So can we try it with the Senate, too? I’m going to send these tweets: 
 
@AZSenateGOP Pls keep #insulinpump coverage in budget. AZ lives at stake @votemccomish @kelliwardaz @adamdriggs @bob_worsley @senstevepierce
 
And: 
 
 
Can you retweet and/or write your own? And encourage your followers to do the same?
 
Steve Pierce, fwiw, is a big supporter of pump coverage.
 
Also, we need to reach Senate President Andy Biggs (abiggs@azleg.gov) and Appropriations Chair Don Shooter (dshooter@azleg.gov), neither of whom appear to have Twitter handles. Please consider sending them an email! I’m going to say, “As a person living with diabetes, I know personally how important access to an insulin pump is in preventing devastating — and expensive — complications from diabetes. Providing insulin pump coverage to Arizona’s adult Medicaid recipients would cost about $105,000 per year, roughly the price of six total emergency room visits. At the moment AZ is the only state besides Alabama not to provide this coverage. Will you join your house colleagues in making the wise decision to reinstate insulin pump coverage for Arizona’s poorest citizens? Your constituents’ lives are at stake.”
 
Oh, and the relevant journalists (should you want to tweet them as well): 
@JimSmall @TomSprattPHX @JeremyDuda @MuckRack @HankDeanLight @Dennis_Welch 
 
I was so happy, and now am so frustrated. UUUGHH!!!
 
****
 

Update (Friday, 3/28): On Friday, March 28, the Arizona House passed a budget that restored insulin pump coverage for adult Medicaid recipients. (See the last line of this article.) This is huge news — apparently the legislators received over 200 social media messages about this issue — and I’m confident that our collective efforts made a difference. Thank you to everyone who tweeted and/or contacted Arizona’s politicians to ask for their support. If you have a moment (even if you didn’t participate the first time), would you consider tweeting a thank you to the politicians whose Twitter handles are listed below? There are still some hurdles to go before this becomes an official part of the budget, and we need to continue our encouragements (and express our gratitude). Thank you all — I’m so excited!

******

I was just alerted to an urgent matter that needs immediate help from the diabetes community. We need to tweet, email and call legislators and journalists in the state of Arizona to encourage the forward-thinking members of the Arizona House of Representatives to pass an amendment providing insulin pump coverage for insulin-dependent Medicaid recipients. 

 

This is urgent because the House is currently – as in, right this very second – considering amendments to its budget.

 

 As we all know, insulin pumps (see below for definition) are crucial tools in managing diabetes, which is a complicated, life-long, and potentially deadly disease that can lead to very expensive consequences.  The House is currently considering an amendment that would provide this life-preserving coverage for poor people with diabetes, a population whose needs are so rarely listened to – and who are the least well equipped to advocate for themselves. We need to encourage the Arizona House to do the right thing and support an amendment for insulin pump coverage.

 

Background:

 

For the past four years, Arizona – in an attempt to close a budget gap – has not been covering insulin pumps for adults on Medicaid (the federal healthcare program for the poor). This means that once you turn 21 – no matter how long you’ve been on an insulin pump, or how important it is to your diabetes management – your insulin pump and its supplies will no longer be covered, and you will be forced back to multiple daily injections. The supposed reason was cost-savings, but consider this: there are only an estimated 200 adult Medicaid recipients in Arizona on insulin pumps. According the Arizona Legislative Budget Office and Medicaid, the cost to the state of Arizona to continue providing these 200 adults with insulin pumps and supplies is an estimated $105,000 per year. (Meanwhile, the Arizona state budget recently passed by the Senate included $1 million in Medicaid coverage for chiropractic services – the only such amendment it allowed through.)

 

People with diabetes know that if you consider the cost of poorly managed diabetes, this is an extremely unwise economic decision: uncontrolled high blood glucose can lead to complications including blindness, amputations, stroke, and kidney failure (among others!). And severe low blood sugar – hypoglycemia – can land you in the emergency room within hours, if not minutes.

 

Exactly how unwise is this decision? Well, according to a 2011 study published in The American Journal of Managed Care (that looked at more than a half a million people with Type 2 diabetes), a low blood sugar that resulted in someone getting admitted to the hospital cost an average of $17,564. If you do the math, this means that if six (6) diabetic Medicaid recipients in the state of Arizona were to be admitted to the hospital because of a low blood sugar in a single year, the cost would exceed a year’s worth of insulin pumps and supplies for every adult Medicaid recipient in Arizona currently on an insulin pump.

 

 

Let me rephrase this:

 

-Arizona could either spend $105,000 per year to provide insulin pumps to all of its affected Medicaid recipients, or

-Arizona could cover the cost for SIX of those recipients to be admitted to the hospital because of low blood sugar, a possibility that is greatly increased in people who do not have the tools necessary to properly manage their diabetes

 

Which would you choose?

 

As noted, the Arizona House is currently considering an amendment to the budget that would reinstate coverage for insulin pumps for qualified Medicaid recipients. We need to help encourage them to make this happen.

 

Regardless of whether you live in Arizona, please consider tweeting this post – or simply “@AZHouseGOP – please support #Medicaid insulin pump coverage!”– to the people below. If you’re up for it, an email would be great, too. And DO IT NOW! It’s Wednesday morning at the moment, and this may be decided in a matter of a day or two. Also, if you know anyone who lives in Arizona who cares about such things, please pass this along.

 

Arizona moderate Republican representatives who hold the most sway on this issue:

 

@andy_tobin  
@frankpratt 
@jeffdial  
@dgoodale 
@EthanforHouse 
@AZHouseGOP  

 

Arizona journalists who might cover this issue:

 

@JimSmall @TomSprattPHX @JeremyDuda @MuckRack @HankDeanLight @Dennis_Welch 

 

 

Further contact info (for those of you who prefer emailing or calling):

 

Andy Tobin (speaker of the AZ house):

atobin@azleg.gov

Rep. Frank Pratt: fpratt@azleg.gov

Rep. Jeff Dial, jdial@azleg.gov

Rep. Doris Goodale,dgoodale@azleg.gov

Rep. Ethan Orr, eorr@azleg.gov

 

Jim Small                                                                   

Arizona News Service Editor

jim.small@azcapitoltimes.com

602­889­7133

@JimSmall 

 

Tom Spratt

Managing Editor

tom.spratt@azcapitoltimes.com

602­889­7138

@TomSprattPHX 

 

 

Jeremy Duda

Governor’s Office Reporter

jeremy.duda@azcapitoltimes.com

602­889­7146

@JeremyDuda 

 

Hank Stephenson

Reporter 

hank.stephenson@azcapitoltimes.com

602­889­7126

 

Angela Gonzales’s Muck Rack portfolio

Arizona Business Journal Senior Reporter

http://muckrack.com/angela­gonzales 

 

Dennis Welch

ABC TV Phoenix Affiliate

dwelch@azfamily.com

@Dennis_Welch 

 

Additional background info on what insulin pumps are and why they’re important:

 

-Insulin pumps are beeper-sized devices that deliver insulin, which people with diabetes depend on in order to stay alive. They allow much better and more nuanced glucose control than multiple daily injections, and are an important – and cost-effective — component of diabetes management for many people with the disease. Here’s a photo of what they look like (for more information on why pump therapy is important, please ask in the comment section – anyone on a pump would be more than happy to tell you!):

 

 

 

-Arizona and Alabama are the only two states that don’t provide insulin pump coverage to people on Medicaid.

 

-In fact, every major health plan in Arizona (and elsewhere in the country) provides coverage for insulin pumps for qualified patients. We in the diabetes community do not believe that Arizona’s poor diabetics – who are disproportionally affected by diabetic complications to begin with – should not have access to the same important treatment option.

 

-Right now, Arizona covers pumps for qualified Medicaid recipients under 21 years old. But when they turn 21, they must go back on multiple daily injections. This would be the equivalent of spending your first 21 years with access to a cell phone, and then being forced to go back to only communicating via US mail. Do you think that might have a negative impact on your daily life? How about if mistakes caused by the postal service could actually kill you?

 

Many thanks for taking the time to read this and take action. And if you’re a legislator in Arizona, thank you for considering the needs of Arizona’s Medicaid recipients with diabetes. This is a really important issue and we appreciate your support. 

5 comments

Why Medicare’s Attitude Toward Diabetes Could Kill Senior Citizens

I, like many people who care about people with diabetes, have a real bee in my bonnet about Medicare’s attitude toward diabetes — particularly in reference to its newly implemented national mail-order program for diabetic supplies. So much so that I actually just said “bee in my bonnet,” which I believe is the very first time in my life that I have ever used that expression. 

Why, you might ask, is my bonnet so bee-filled? Because the reduced access to high quality blood glucose meters is putting seniors’ lives at risk. Yeah, that’s right: if you love anyone who’s got diabetes and is over 65, the unintended consequences of this program could kill them. Here’s the issue in a nutshell: 

1. On July 1, 2013, Medicare implemented a mail order program for diabetes testing supplies nationwide. Translation: If you’re on Medicare and you want to get your diabetes test strips by mail, then you must use a Medicare-approved supplier for those test strips. (Important note: if you don’t mind going to the pharmacy, you can get your strips from a Medicare-contracted pharmacy — but it may end up costing you more, and is also obviously less convenient.)

2. Medicare only gave contracts to about 2 dozen suppliers (not all of which are available in all geographic areas, so your choice of where to get your test strips is limited). Perhaps even more importantly, it reduced the reimbursement rate for diabetic test strips by about 72 percent. This was meant, obviously, to reduce costs. But this rate was so low that it can’t pay for strips from some of the big test strip makers — like Abbott, Roche and Accu-chek. As a result, suppliers are switching many Medicare recipients — often against their will — to generic meters and strips instead. (Really important note: They’re not allowed to do this! If you’re on Medicare, you have the right to stay on the meter prescribed by your healthcare professional. For more details, scroll down a bit on this page.)

3. Blood glucose meters are not interchangeable. This is partly because different people — particularly seniors — have different needs (for example, you might need a meter with large type, or a meter that speaks to you in case you have poor eyesight and can’t see the number, or a meter that is particularly large or small, etc), and partly because . . . 

4. . . . Diabetes test strips and blood glucose meters are not all equally accurate. This might come as a surprise to many people — I for one had previously assumed that a meter is a meter is a meter — but there are many meters on the market that do not consistently give accurate results, and generic meters, particularly those produced overseas, are particularly problematic. (Read my article, Why You Should Worry About the Accuracy of Your Blood Glucose Strips, for more information — as well as my post, Why You Should Be Depressed About the Government’s Attitude Toward Diabetes.) Guess which meters the Medicare-approved suppliers are pushing on seniors? The cheapest ones possible — i.e. the very generic meters that are the most likely to be inaccurate. What’s more, there is also no program in place to make sure that meters and strips that get cleared by the FDA continue to maintain the same levels of accuracy once they’re on the market. (For more on this issue, check out StripSafely.com.) 

The dangers posed by inaccurate meters and strips should be obvious: if you use a meter to dose insulin, and if your meter is wrong, then you can take too much insulin — and you could die. Senior citizens need access to accurate blood glucose meters. (As do ALL people with diabetes!)  This is not a push for a particular brand or company — if we can get accurate meters for less money, that is great. But cost reduction should not threaten the lives of the very people it’s meant to help. 

I’m going to write an article about the American Association of Diabetes Educators’ recent investigation of the competitive bidding program for diabetic testing supplies (spoiler alert: suppliers are not providing what they promised). But for now, I bring the subject up because Manny Hernandez of the Diabetes Hands Foundation/TuDiabetes just tweeted an article that I very much hope the powers that be at the Centers for Medicare and Medicaid Services (CMS) pay attention to: an article from US News and World Report titled “Elderly Diabetic Patients on Insulin Most Vulnerable to Low-Blood-Sugar Trouble.” If I may quote: 

“A new look at diabetes patients in the United States who use insulin and wind up in the emergency room with low blood sugar shows the dangerous scenario is more than twice as likely to happen to those over 80 years old.

“Not only that, elderly diabetes patients are five times more likely to be hospitalized than younger patients as a result of the low-blood-sugar episode, the study found.

“‘Managing insulin can be a complex endeavor,’ said study author Dr. Andrew Geller, a medical officer at the U.S. Centers for Disease Control and Prevention. ‘We knew it would cause a lot of emergency-department visits for adverse events, but we didn’t expect the full severity of these events. Almost two-thirds involved things like passing out and seizures.'”

Geller and his colleagues “were able to estimate that just less than 98,000 emergency-room visits occur in the United States each year due to insulin-related low blood sugar,” and that “almost 30 percent of those emergency-room visits resulted in hospitalization.”

Putting aside the obvious health risks posed by severe hypoglycemia, I’d note that 98,000 emergency room visits per year likely cost the government (and health insurers) a hell of a lot more than the price of an adequate supply of accurate blood glucose meters and strips. 

Judging from comments I heard from CMS at the Diabetes Technology Society’s meeting in September,  however, I anticipate that CMS would interpret the findings of this study quite differently — namely, they’ll see it as evidence not that blood glucose meters need to be accurate, but that fewer seniors should be on insulin.

What this interpretation would miss is that these are two separate issues. We in the diabetes community are not talking about whether a senior citizen should or should not be on insulin. That is a choice that should be left to the person and his or her doctor. What the diabetes community is saying is that a blood glucose meter is only a blood glucose meter if it is accurate. If it is not accurate, then it cannot be used to dose insulin or “make therapy adjustments,” if I may quote CMS itself. And if a meter cannot be used to “make therapy adjustments,” then it cannot be considered to be Durable Medical Equipment (DME) and therefore cannot legally be covered by Medicare

If you think this issue is important and would like your voice heard, here’s some good news: the FDA is accepting (and encouraging) comments from the public on its new draft guidance for blood glucose meters. (FDA is not responsible for competitive bidding — in fact, the FDA appears to have quite an enlightened view toward diabetes devices — but since CMS often looks to FDA guidance to make decisions, it’s important for us to make our concerns and suggestions known to the FDA.) Check out the sample comments the StripSafely team and I put together — complete with easy-to-follow instructions and links — here. (Pay particular attention to the suggested comments about “durable medical equipment,” since that is the part most likely to impact CMS and the coverage issues brought up in this post.) 

I also recommend that you consider sending a letter in support of calling a Congressional hearing to ensure that the meters provided under Medicare’s competitive  bidding program live up to the accuracy standards of the FDA. We’ve put together a sample letter — again, with instructions — here. It’s really easy, and could make an enormous difference.

Lastly, if you or your loved ones experience any sort of adverse effect of Medicare’s policy toward diabetic testing equipment — whether it’s a problem with the meter or test strips themselves, or a problem getting access to them to begin with — I strongly encourage you to complain directly to CMS. You can do so via this link. Heck, I recommend filing a complaint regardless, pointing out the issues raised here and on StripSafely.com. And while you’re at it, why not contact the Inspector General of Health and Human Services, the government agency responsible for investigating Medicare Fraud. Point out that if Medicare is reimbursing suppliers for testing equipment that can’t be used to make therapy adjustments — and that therefore cannot be considered to be Durable Medical Equipment — then those suppliers are defrauding the government by receiving reimbursements for equipment that should not technically have been covered. (More on this line of thought later.) 

If you tweet this article, or anything about it, please use @medicaregov and @OIGatHHS (the inspector general) so that they are aware of our concerns. And if you can throw in a little @stripsafely as well, that would be superb. 

Thank you for reading this. If we work together, we may be able to save people’s lives.

 

10 comments

Minimed 530G with Enlite Trial, Threshold Suspend

Last week I started a trial of Medtronic’s latest insulin pump and continuous glucose monitoring system, the Minimed 530G with Enlite. (See my previous post here.) I thought I’d devote today’s post to what’s arguably the most exciting part of the new system: threshold suspend. 

As those of you who have been keeping up with the work toward developing a closed-loop insulin delivery system (the so-called Artificial Pancreas) know, threshold suspend is the first step in the long journey toward that goal. (You, like me, may also have been irritated by the marketing that surrounded the 530G and used the word “artificial pancreas,” since it was picked up and oversimplified by the news media to suggest that this system actually is an artificial pancreas, which it is most definitely not.) 

Threshold suspend, which has been available on Medtronic’s Veo pump/CGM system in Europe since 2009, means that if your blood glucose reaches a certain predetermined level (anywhere from 60-90 mg/dL), your insulin pump will alarm, warning you of a potentially dangerous low. If you respond to the warning, nothing will happen.  Minimed 530G with Enlite Trial, Threshold SuspendBut if you do not respond to that warning, the pump will shut off basal insulin delivery for two hours. (Then it will go on for four hours, then off for another two, etc, till someone clears the alarm.) The idea is simple: if you’ve got a low blood sugar and are not responding, the last thing you need is more insulin. 

When I set up my 530G system last week, I was hoping not to have to experience the benefits of Threshold Suspend firsthand. I’m lucky enough to never have passed out or been sent to the hospital as a result of a low blood sugar, and thanks to my CGM, usually am able to stave off bad nighttime lows. So I was surprised when I found myself roused from sleep my first night on the system by two-tone alarm of my pump going off, and the message on its screen that said Threshold Suspend. A quick scan of my body confirmed what it was suggesting: my heart was racing, and I felt shaky. My blood sugar was indeed low. And whereas I’m normally able to correct for a low with two glucose tablets (even that sometimes sends me too high), that night I took five glucose tablets and never had a spike above 130 mg/dL. In other words, I’m glad that it went off. 

With that said, I’ve also found some things about the Threshold Suspend function to be unsatisfying/annoying. First, it isn’t predictive, meaning that it will only shut off once you’ve already reached your predetermined target (the next generation will hopefully have this capability). But second, there are some aspects of Threshold Suspend that I worry will limit its use. For example, you can only set your limit from 60 mg/dL to 90 mg/dL (kind of odd, since you can set other aspects of the pump as low as 40 mg/dL). I have mine set at 60 mg/dL, as low as it’ll go, but I don’t think it’s low enough: I often touch 60 mg/dL over the course of the day, and I don’t consider those lows to be emergency situations, since I’m alert and easily able to correct it. I would like to have the option to set it lower.

Second, I would like to be able to create two targets for Threshold Suspend: one for the nighttime, and one for the day (and a temporary snooze function). I say this because, as mentioned, a low of 60 mg/dL when I’m alert and awake is not an emergency situation. But the pump’s Threshold Suspend function INSISTS that it’s an emergency. The alarm does not start with a vibration — it goes straight into full on alarm mode. This means that if you are in a situation where you don’t want to risk having a siren emanate from your body — say a meeting or interview or yoga class — then your only option is to turn off Threshold Suspend. That might be fine for the moment, but it puts you at risk of forgetting to turn it back on for the times you really do need it, particularly before you go to sleep. And if the sensor is giving you an inaccurate reading — which is quite possible on any CGM system — then it’s even worse: you can have your pump start to go bat-sh*t crazy on you when you aren’t even low. 

All this brings up a point that I predict I will be reiterating throughout this trial: I wish that there had been more patient input in the design of the 530G, particularly when it comes to alarms. I do not know what type of trials were done before the system was submitted to FDA for approval, but I cannot imagine following a real person with tightly controlled diabetes around for three days and not concluding that the current limits for Threshold Suspend are too high, and that you should be able to set different limits for different times of day (and that the nighttime alarm should be louder — by the time I woke up, insulin delivery had already been suspended). As it is now, I really do worry that the annoyance of having a siren go off every time my blood glucose hits 60 mg/dL is eventually going to make me either turn it off (and forget to turn it back on), or turn it off entirely. And that would defeat the main added benefit of this particular pump.

With that said, I think that the Threshold Suspend feature of the 530G system is a great advance in diabetes care. I also think that integrated pump and CGM systems — especially those that can ward off potential dangerous lows — are essential for people with diabetes, and I believe that insurance companies and payers like Medicare should cover them. That’s probably the most important message of all. 

4 comments

Minimed 530G with Enlite Sensor Trial, Day 1

When Medtronic recently offered me the opportunity to do a free trial of the Minimed 530G with Enlite Sensor, their new pump and continuous glucose monitoring system, I jumped at the chance. (Disclosure: I have to give it back at the end of the trial period, and they have no say over what I write. Right now I wear the Medtronic Paradigm Revel 523, and the Dexcom Platinum G4 CGM.) Not only am I a diabetes dork and self-experimentation enthusiast, but I genuinely am interested in whether I might eventually be interested in switching over. 

I’m planning on writing a series of blog posts about the experience — so let’s start with the basics.

After an initial call last week from Sheryl, my StartRight program contact (StartRight is Medtronic’s new six-month support program for new customers or people upgrading their systems, and seems pretty awesome), I met my trainer, Lindsay, at a coffee shop this morning to get started with the system. 

I’d already checked out some of the gear myself — or, I should say, the packaging, which Medtronic recently redesigned to provide users with a less overwhelming and intimidating initial experience. (Some people had been so overwhelmed when they opened the box that they sent the pump back without even trying it.) So now the pump and CGM come in a special suitcase that you can bring with you to your training session, without having to worry about whether you’ve got what you need. In addition, the boxes themselves have been redesigned to look more like an Apple product than a medical device. For example: 

Is it a pump? Or is it an iPad?

 

The pump itself doesn’t look that different from the Paradigm Revel. 

 

It’s a good idea, especially when you imagine what it’s like to initially consider going from this:

 

 

to this:

 The first important thing to know about the Minimed 530G with Enlite is that it’s an entire integrated system — so that’s what I’ll devote the rest of this post to describing.

One part is the Minimed pump, which is what actually delivers the insulin. (As pumpers know, the pump is not “smart” — it can’t decide dosing itself — but it makes it much easier to customize your basal rates and make precise adjustments.) And the Minimed 530G is also the first insulin pump approved in the US that has “threshold suspend.” I’ll write more about this feature later, but the basic idea is that once you reach a predetermined number — say, 60 mg/dl — the pump will sound an alarm to make sure that you are alert and conscious (in which case you simply clear the alarm). If you do not respond to its alarm, then it will make a very loud noise, and go into “threshold suspend” mode, which means that it will halt the delivery of basal insulin for 2 hours or until you clear the alarm, whichever occurs first. The idea, of course, is to prevent making a low blood sugar worse by pumping in additional insulin. Again, more on this later.

The Minimed 530G Insulin Pump

The next part of the system is the Enlite continuous glucose monitoring system, which reads your interstitial glucose levels and transmits them wirelessly to the pump, which will then alarm if you go too high or too low. (As a side note, some insurance providers — hello, CMS! — don’t believe in the value of CGMs because you’re not supposed to actually dose insulin off them. To which I would like to point out an alternate definition of them, provided courtesy of StripSafely.com‘s Bennet Dunlap: by alerting you to severe hypos, they actually can be considered “death avoiders” — which seems to me like a pretty important purpose, and one which Medicare JUST MIGHT WANT TO COVER.) 

Enlite sensor

Enlite sensor and transmitter — this is the part of the CGM that you wear on your body

But I digress. The third part of the system is Bayer’s Contour Next Link blood glucose meter. This is the blood glucose meter that the FDA has specifically approved as part of the Medtronic system, and it’s pretty cool: when you test your blood sugar on the meter, it automatically logs the number, asks you if it’s before or after a meal (or neither) and sends the information to your pump. The pump then asks you if you would like to use that number to calibrate your continuous monitor (eliminating the need for manual entry) and also puts that number automatically into your “bolus wizard calculator,” which is a tool built into the pump that helps you calculate a proper insulin dose. 

Bayer Contour Next Link Blood Glucose Meter

What’s more, one side of the Next Link is actually a USB dongle — which gets me to the fourth part of the system: the CareLink Personal Management Therapy Software. Once you’ve created a CareLink account, you can plug in your dongle (heh), and the software is able to input all the info from not just the blood glucose meter, but from your pump and the continuous glucose monitor as well. You can then view this combined data on a variety of different graphs and overlays (I will write more about it once I’ve played around), and you can share it with your doctor or diabetes educator or anyone else you think might be interested. What’s more, since CareLink is based in the cloud, you can use it on either PCs or Macs (hallelujah!), and it automatically synchs between your devices. 

***An important coverage note: if you are on the Medtronic system and your insurance company says that it will not cover the Bayer strips, talk to your doctor about writing a letter of medical necessity saying that you require those particular strips. If that doesn’t work, contact Medtronic directly and ask them for help/guidance — if you’re on the 530G with Enlite system, there should be a way to get an authorization to get these specific strips. This is also true for people on mail order — if your mail order supplier tries to switch you to a different meter, PLEASE contact Medtronic or your StartRight representative and ask for help. The mail order supplier is supposed to be getting you these particular strips. (With that said, if you don’t want to use the Bayer meter you also can pick a different one and manually input blood glucose values; you just need to get a CareLink dongle, available from Medtronic, to get the data from the pump into your computer.)***

So that’s the basic overview of how the system works. It’s the first — and only — system in the US in which a CGM and pump communicate with each other directly. (Johnson & Johnson has submitted an integrated Animas Vibe pump/Dexcom CGM system to the FDA, but it has not yet been approved, and while Tandem and Dexcom have a similar plan, it’s not yet been submitted.) It’s also the first system in the US to have low threshold suspend. And it’s also the first system where the data from all three components — pump, CGM and blood glucose meter — can be easily displayed in one software management system. And I have to say, as someone who’s spent the past five years or so on a Dexcom CGM, Medtronic pump, and Abbott blood glucose meter, this smooth integration is really, really nice. 

For my next post, I’ll talk about getting started on the system. If you have any specific questions you’d like me to try to answer during the course of this trial, please leave them in the comment section.

7 comments

What Do Your A1c Test Results Really Mean?

The hemoglobin A1c test, as we all know, is supposed to give a sense of your average blood glucose levels over the past three months. But here’s a question for you: have you ever tried to figure out what those average blood glucose levels actually are? Say you have an A1c of 6.5% — what, in mg/dl, does that translate to? 

Try searching Google — it’s hard to find an answer. To quote from a post I wrote a few years ago (see entry from 4:45), that’s partially because:

“Not only is there no one standardized definition as to the correlation between A1c and mean glucose levels (JDRF says 1% = 24.4 mg/dl, ADA says 28.7), but different people have different correlations. For example, if you are a ‘high glycolator’ (more glucose sticks to your hemoglobin than the average)  you can have a relatively high A1c but a low mean glucose. The speaker gave the example of a patient who had a 8.2% A1c, but a mean glucose of 159 mg/dl (he was speaking using the generally accepted idea that 7% roughly equals a mean of 154 mg/dl). Treat him more aggressively, and you’ll end up with hypos. And if you’re a ‘hypoglycolator,’ it’s the opposite.”

Well, just this week, a new paper was published in the American Diabetes Association’s Diabetes Care journal that provides a more solid answer to this question than I’ve seen — even though, as I must warn you, personal variability (as described above) means there’s still no precise answer. In the study, researchers wanted to find out what your average blood sugar would have to be in three situations — fasting, after meals and before bed — in order to achieve a particular A1c. 

Here are their results: 

A1c test results of 5.5-6.49% were associated with an average fasting blood glucose level of 122 mg/dl.

A1c test results of 6.5-6.99% were associated with an average fasting blood glucose level of 142 mg/dl.

A1c test results of 7-7.49% were associated with an average fasting blood glucose level of 152 mg/dl.

A1c test results of 7.5-7.99% were associated with an average fasting blood glucose level of 167 mg/dl

A1c test results of 8-8.49% were associated with an average fasting blood glucose level of 178 mg/dl.

The abstract only reveals two values for the post-meal and pre-bed glucose values:

An A1c test result of 6.5-6.99% was correlated with an average post-meal blood glucose of 139 mg/dl, and an A1c of 7.0-7.45% with an average post-meal reading of 152 mg/dl (unfortunately I can’t tell from the abstract how long after meals these numbers were taken). 

An A1c test result of 6.5-6.99% was associated with an average pre-bed blood glucose of 153 mg/dl, and an A1c of 7.0-7.49% represented an average pre-bed value of 177 mg/dl.

More information on the study is here.

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Spare a Rose, Save a Child: Dedicate this Valentine’s Day to Helping a Kid With Diabetes Survive

Life with diabetes is challenging under any circumstance, but imagine what it would be like if you didn’t have access to syringes, or any test strips, or, for that matter, insulin. It might sound like a rhetorical question, since we all know the answer — at best, you’d develop serious complications, and at worst, you’d die — but that situation is a reality for many kids around the world. (According to Fran Kaufman, MD, diabetes advocate extraordinaire, the death rate for kids with Type 1 in Haiti reaches an astounding 80 percent in the first year after diagnosis.) That’s why a bunch of diabetes advocates have joined together to create the Spare a Rose, Save a Child campaign (for the 2nd year in a row!) to try to channel some of our collective Valentine’s Day love into helping kids who need it the most. 

The basic idea: instead of buying your sweetheart a full bouquet of flowers, you donate the price of one rose (or several, if you’re up for it!) to the International Diabetes Federation’s Life for a Child program. They take that money and use it to pay for insulin, blood glucose testing supplies, diabetes education and clinical care for children in need.

A single rose ($5) can help support a child for a month.

As I write, the campaign is up to more than $14,000 $19,000 (!!) — a truly astounding achievement for such a grassroots initiative. We’re trying to reach at least $20,000. Will you help make this Valentine’s Day make a difference?

More information about the initiative at SpareARose. And you can read another account of why this is important (from blogger Melissa Lee) here.

Please tweet, retweet, Facebook, email, and whatever else you can do to spread the word — and happy Valentine’s day to you all!

If you need any more convincing that this is a big deal, check out this (heart-breaking) trailer for the Life for a Child documentary, “In the Hearts of Africa”:

YouTube Preview Image

 

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Medtronic Diabetes Advocate Forum 2014

I just got home from the 2014 Medtronic Diabetes Advocate Forum (twitter: #medtronicDAF), a yearly event where Medtronic invites a group of diabetes advocates (including Karmel!) to its headquarters in Northridge CA to meet its diabetes team, learn about new products, and brainstorm with each other. (Medtronic pays for guests’ transportation, hotel and food, but does not pay for any subsequent coverage of the event. All views are my own.) It was my first year at the forum and I found it fascinating, so wanted to share a bit of the experience for people who were not there.

Medtronic Diabetes Advocate Forum 2014

After a welcome dinner, we started the two-day conference with a presentation on the latest Medtronic diabetes products — namely, the recently approved MiniMed 530G with Enlite system, which is a combination pump/continuous glucometer with “low glucose suspend.” (It temporarily shuts off basal insulin delivery if the CGM indicates that your blood sugar is low and you are not responding.) The 530G is one step on the long path toward the end game of diabetes technology: a fully closed loop system (i.e. “artificial” or “virtual” pancreas) that could manage your diabetes for you, with little or no input required.

Medtronic has gotten some flak for using the terminology “artificial pancreas” on its 530G promotional material, since – for as great as it is – low glucose suspend is a far cry from a fully closed loop system. For what it’s worth, Medtronic definitely recognizes that this is not an artificial pancreas and apologized for any misperception. The good news (in my opinion) is that the terminology the FDA used in its approval – namely “artificial pancreas device system with threshold suspend” – creates a bureaucratic/logistical category for future products that go beyond threshold suspend. I’m hoping that having this conceptual foundation in place will simplify the path going forward.

And what might these future products be? Well, as was repeatedly emphasized, the path toward a fully automated system is a marathon, not a sprint, and there will be numerous steps along the way. The first is to get US approval for a predictive threshold suspend system – whereas the 530G shuts off when you’ve already reached your target low, a predictive system would shut off when the CGM indicates that you are approaching your target low (thereby potentially avoiding the low altogether). Medtronic is going to be launching a predictive system in Europe soon, and has begun the clinical trials necessary to apply for approval/clearance in the US. A quick note to FDA: from a patient perspective, this is a no-brainer and I hope that the process is smooth.

Next would be a partially closed loop system that would manage your basals at night to try to keep you in range as you slept. The reason for this approach is that nighttime has fewer variables than other times of day – you’re not exercising or eating – and so it’s the low-hanging fruit where closed-loop systems are involved. This system would allow you to put your pump/CGM on autopilot as you slept, in hopes that the result would be at least 8 hours a day of glucoses in a good range (and would prevent nighttime lows).

And next would be what I would still call a “partially closed loop” system – one in which you would have to bolus for meals (since today’s insulins are simply not fast enough to keep up with food in real-time) and then your pump/CGM would make any corrections afterwards. There was some discussion about whether such a system would count as a truly “artificial pancreas” – and my opinion (as well as most people present) was that it would not. Frankly, for someone who obsessively monitors their blood sugar after meals and makes miniscule adjustments all the time, I don’t feel like this would give me much of an advantage beyond what I’m doing now. While I think it is an extremely important step toward a true artificial pancreas, I very much hope that no one thinks of it as the final goal.

In order for these things to happen, we need better sensors and better algorithms – that is, the computations that the pump uses to decide how much insulin to dose. My hope – and something that Medtronic is actively working on as well – is that eventually pump algorithms will be “smart,” meaning that they will learn from your mistakes. As opposed to today’s Bolus Wizard feature, which requires input from the user to create any sort of customization, a “smart” system would keep track of patterns itself and make adjustments, eventually resulting in a level of customization that would provide better control. I find this particular idea extremely exciting – I would love to be able to outsource some of the thinking that goes into every correction dose.

In addition to learning more about future technology, we also had a breakout session about Medtronic’s new StartRight program, which is available to every new pump user. Basically, you get paired up with your own pump educator, who stays in touch with you, providing education and support, through the first few months of using an insulin pump, beginning even before you open the box (in fact, they even try to be on the phone with you when you open the box for the first time). I think this is a great idea – starting on pump therapy can be a very emotionally exhausting experience, and apparently there are times when people get so freaked out that they send back the box without even trying the system at all. Hopefully this new program will help ease that transition, as well as provide training on how to take advantage of all the features of the pump (and CGM).

I was also particularly fascinated by a session about government and private payer coverage for insulin pumps and continuous glucose monitoring systems. That probably warrants a separate post, but basically (and these editorial views are my own!), CMS – the Centers for Medicare and Medicaid Services — has a seriously f’d up attitude when it comes to diabetes care. This includes the perspective that continuous glucose monitoring “lacks a medical purpose” since at the moment it requires finger sticks for calibration. (This is why CGMs are not covered by Medicare or most state Medicaids.) As someone who believes strongly that there is a “medical purpose” in a device that can prevent me from dying in my sleep from a severe low, I hope to work with Medtronic, other patient advocates and other companies to change this attitude. This also underscores the need for even better sensors.

In addition to a group brainstorm on social media advocacy efforts, we also heard an amazing presentation by Dr. Francine Kaufman, chief medical officer at Medtronic Diabetes (and one of the country’s foremost pediatric endocrinologists). I’d met Dr. Kaufman in passing and heard many mentions of her name, but I’d never seen her talk. Now that I have, I am questioning my purpose in life – the number of philanthropic projects and outreach efforts she is involved in is truly amazing. Her talk also reminded me of how easy it is for us in the US (and other developed countries) to forget just how privileged we are when it comes to diabetes care. I’m not talking about access to pumps; I’m talking about insulin – Dr. Kaufman does a lot of work with Type 1 children in Haiti, among other seriously underserved populations, and told us that the mortality rate for kids in Haiti (or many areas in sub-saharan Africa) with Type 1 diabetes is about 80 percent in the first year after diagnosis. Eighty percent.

If you’re interested in learning more – and helping – please check out two of the programs she’s involved in: Insulin for Life, which sends donated insulin and other diabetes supplies to developing nations (and just began a program here in the United States), and the International Diabetes Federation’s Life for a Child program, which has a similar aim (money donated to Life for a Child goes to established diabetes centers in developing countries so that they can provide care and supplies to children with Type 1 diabetes).

We closed out the conference with an interactive session led by David Strasberg, son of Lee Strasberg, the creator of the Method Acting technique. As someone who once refused to be the narrator in her kindergarten class play because she preferred the role of an apple tree, I have never been one for acting workshops. But David – who has Type 1 diabetes himself and whose son also has Type 1 – focused instead on the art of the “ask” – a very useful tool for anyone involved in diabetes advocacy. I had my doubts going in (see tree reference above) but it ended up being a surprisingly useful (and at times emotional) session.

And on that note, one of the nicest things about the entire event was the sense of community between the diabetes advocates present and the team at Medtronic. I think that a lot of companies struggle to figure out the best way to interact with their customers, and that Medtronic – along with several other diabetes companies, including Sanofi – do a really nice job of engaging with the community in a way that feels authentic and heartfelt. I didn’t feel like I was being pitched something; I felt like I’d been given a chance to learn about things that interest me (why am I so captivated by insurance codes?), give feedback, ask questions, and – perhaps even better – meet a bunch of other advocates in person. I’m particularly excited about spreading the word about some of the advocacy and fund-raising ideas we came up with, including promoting Lee Ann Thill’s amazing Diabetes Art Day (coming up fast on February 3 – please participate, including taking her pre- and post-survey!), and an effort – details coming soon – to raise $10,000 by Valentine’s Day for Insulin for Life, to help get donated diabetes supplies to those who need them the most. 

While the conference was exhausting, I left inspired and extremely grateful for all the people working behind the scenes to make life with diabetes easier for us all.

If you have any questions you’d like me to pass on to the Medtronic team, please leave them in the comments section. Or, if you’d prefer to contact them directly, tweet a message to @MDT_diabetes — they actively monitor the feed.

 

 

 

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Why You Should Be Depressed About the Government’s Attitude Toward Diabetes, Part I

First, an update on my last post, about Oregon’s decision regarding limitations on test strips for people with Type 2 diabetes. According to DiaTribe, Oregon’s Health Evidence Review Commission (HERC) voted on December 5 on a revised proposal on reduced access to blood glucose test strips for people with Type 2 diabetes. In sum: better than they’d originally proposed, but still bad. To quote DiaTribe:

“The new proposal will now provide 50 test strips to newly diagnosed type 2 patients, and then 50 strips for every 90 days if the patient starts using a diabetes medication. Although this is not optimal, it is certainly much better than having no strips for people with an A1c under 8.0% and only one strip per week for those with an A1c over 8.0%. We want to thank all of the diabetes advocates who made their voices heard and the more than 3,000 supporters who signed our petitionagainst the original proposal.

The new proposal also includes a “safety valve” for special cases, in which patients can receive 50 more strips if there is a change in glycemic control or adjustments in medication. While it’s encouraging that the commission responded to the public outcry against limiting test strips, we were shocked by the attitude of several commission members. We heard some say,  “More knowledge for patients is not always better…”, “Lay people just don’t understand these issues…”, and “We make guidance based on evidence, not emotions…” Even though the revised proposal avoided the worst-case scenario, these quotes underscored a profound misunderstanding of the daily realities of diabetes management.

There are many reasons that I am depressed by this, but it boils down to my distress at a series of recent government decisions to severely limit access to supplies and products that are crucial for managing life with diabetes — and statements, as indicated above, at how the people in charge come to their decisions. To give a few examples:  in July 2013 there was a nationwide roll-out of a new Medicare pricing structure for diabetes test strips, which cut reimbursement rates so dramatically that it cut out many of the high-quality, leading brands, leading to the possibility of Medicare beneficiaries (and, as a trickle-down result, people on private insurance plans), being forced to use generic strips with a serious, potentially deadly, possibility for inaccuracy. (For more on this issue, visit StripSafely.com.)

In September, at a DTS meeting devoted to the issue of test strip safely (more on this issue in my previous feature and in Riva’s post), I learned more about the attitudes of CMS (the Centers for Medicare and Medicaid Services – the people who make coverage decisions) on what an acceptable glucose level is for someone with Type 2 diabetes. Spoiler alert: they don’t see any issues with high blood glucose levels for people with Type 2, and cited a paper indicating that a hemoglobin A1c of more than 11% was perfectly safe for people with Type 2; therefore, according to CMS, people with Type 2 don’t really need accurate meters or access to test strips. 

About a week ago, I learned of an issue in which people on Medicare who get insulin for an insulin pump often can’t get their insulin, because it’s reimbursed at a rate so low that most pharmacies won’t provide it. (The detailed reason is that insulin used in a pump is considered a “medical supply,” and is paid for by Medicare Part B, which pays $75/vial — less than the cost to the pharmacy — whereas the same insulin used in injections is considered a prescription drug, and thus is covered by Medicare Part D, which pays about $150.)

And now, though it hasn’t gotten much attention yet, there’s a new pricing structure for durable medical equipment, scheduled to go into effect in 9 areas around the country on January 1, 2014 (it will be effective everywhere by 2016) that cuts the reimbursement rates for insulin pumps (already notoriously difficult to even GET on Medicare) by an average of 15%. That might not sound like a lot, but it’s actually a considerable cut to a product that also includes 24/7 customer support, 4-year warranties, and considerable quality control — important details for, you know, a machine that could kill you if it malfunctions. I am working to get to the bottom of this issue — more details later — but since Medicare’s decisions often trickle down to the private insurance world, I am very worried, especially when you combine this with the 72% reduction in reimbursement for diabetic blood glucose testing strips that became effective July 2013.  Apparently the next big issue is whether Medicare will create a coverage code for “sensor-augmented pumps” — that is, pumps that integrate with a continuous glucose monitor in any fashion, as Medtronic’s pump currently does. No Medicare code for sensor-augmented insulin pumps would deal a serious blow to efforts to produce a closed-loop “artificial pancreas,” since without a code, there’s no way a company could actually bill for such a product. (Oh, and side note: Medicare doesn’t have a coverage code for CGMs at all, since it doesn’t consider them to be important for its patient population.) 

Coupled with this, I am personally having a day where I experience firsthand one of the main consequences of high blood sugar that seems never to be addressed in government discussions on coverage: how it makes you feel. For reasons unbeknownst to me, my blood sugar began the day by climbing to 250 mg/dl (without any food!), and has remained there for the rest of the day, despite a workout, repeated correction boluses, a low-carb lunch, and an insertion site switch. According to my Dexcom CGM, it has now reached 303 mg/dl — a level far, far higher than I usually reach (thank god). I have no idea why it is doing this, and no idea how to fix it other than to continue to pump myself full of insulin and hope that it all doesn’t start working at once. In the meantime, my head feels cloudy, I’m peeing like a race horse, I’m having trouble typing, and I feel a lot of pressure behind my eyes. And perhaps most importantly — and the reason I bring this up here — I have been unable to concentrate all day. Not just because of the emotional stress of knowing my blood sugar is high, but because of high blood sugar’s effects on one’s ability to concentrate at all. 

And that is something I want to see paid more attention to. Medicare, Medcaid, and private insurers make coverage decisions based on their interpretations of medical and scientific evidence — and yet when I looked up “hyperglycemia and difficulty concentrating” in Google Scholar, nothing particularly relevant popped up. We will never be able to influence coverage decisions without pointing to the sort of evidence that the government and private insurers have decided they will rely on. So why is there not more of an attempt to provide evidence on this? I think it would be a simple research project: collect a sample of people, hook them up to a CGM plus glucose/insulin drip, and manipulate their blood sugar to be either high or normal. Then have them perform some sort of task on the computer that requires focus (ideally something like having them do a simulated driving game, since if high blood sugar could be proved to contribute to crashes, which would lead to expensive emergency room visits, there’d be an economic proof as to why preventing high blood sugar is important in the near-term — something that current coverage policies do not address). Adjust their blood glucose level to the opposite (bring the people with high blood sugars to normal; raise the normals to high — that way everyone would serve as their own control) and do it again. Then publish the data. Please, please, someone do this! (Hello, residents looking for research projects!) I have spent all day high, and have gotten nothing done other than this blog post, since my head feels like it is stuffed with cotton. I live in fear of coverage decisions that might cause more of my days to feel like this much of a waste. 

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Petition to Prevent Oregon From Severely Limiting Test Strips

According to an update I just got from DiaTribe, Oregon is considering severely limiting access to glucose test strips for people with Type 2 diabetes. This is one of a series of recent examples of an extremely worrisome trend toward lowering test strip coverage for people with Type 2 diabetes, and I want to encourage everyone who has diabetes or who knows someone who does  (or who cares about it at all!) to sign this petition asking Oregon’s legislature to, if I may be blunt, not be idiots. 

To quote from DiaTribe,

“At a recent meeting of Oregon’s Health Evidence Review Commission (HERC), the state panel recommended reducing access to test strips for people with type 2 diabetes on the Medicaid-funded Oregon Health Plan (OHP). A new plan would severely restrict access to strips for type 2 patients unless they are newly diagnosed, take insulin, or meet a few other special requirements. For people not taking insulin – which covers the vast majority, about 70% of all type 2 patients – those with an A1c above 8.0% would be entitled to one test strip per week, while those with an A1c below 8.0% would not be provided with any test strips at all. 

This recommendation would severly limit test strips and set a dangerous precedent for other states looking to cut overall health care costs. It’s difficult to understand how the HERC imagines people with an A1c below 8.0% will manage their diabetes without test strips, and a test strip every week is hardly meaningful for patients or providers. Furthermore, any cost reductions will likely be more than canceled out in the long-term due to increased complications, hospital visits, and operations that inevitably follow poor control. 

The decision is currently scheduled for December 5. If you are a person with diabetes or a caregiver, we encourage you to sign this petition and write to Oregon Health Authority’s Director Dr. Bruce Goldberg and the members of the HERC about the importance of having access to test strips and self-monitoring blood glucose.”

This particular coverage decision has to do with Medicare — i.e. the government health insurance for poor people — but this potential decision is no doubt partially inspired by Medicare’s (that is, gov’t healthcare for older people) approach toward blood glucose control in Type 2 diabetics who are not insulin — which is to say, they think that blood glucose control does not matter. (If you are interested in learning more, contact me directly and I can send you the papers they use to justify this attitude.) Why should you care about this if you’re not on Medicaid or Medicare? Well, first, it’s upsetting to think that the poorest people in the country may be even further restricted in terms of access to care. And second, anything that MediCARE does is incredibly important for the private health insurance market, since its coverage decisions are often used by private insurers as well. (They’re required to cover what Medicare covers, but don’t necessarily have to do more.) 

Putting aside the potentially harmful trickle-down effects to other people with diabetes, I am continually shocked when I hear of things like this, since it does not address the fact that having an extremely high A1c, regardless of potential long-term consequences, can make you a near-term menace (and a potentially expensive one) to public health. 

For example: when I was diagnosed with Type 1 at the age of 22, my initial HbA1c was 11.4%. In addition to being unable to sit through a 40-minute class without a bathroom break, my eyesight changed (due to the changing shape of my eyeballs), I was uncontrollably tired, my short-term memory was impaired, I began throwing up and was restricted to bed for a few days, and — the day before I finally went to the health clinic — I was so dizzy and confused that I was unable to walk down the street without help from a friend. I was not able to work; I was not able to think; I was not able to see properly; I was barely able to walk. 

And yet in the eyes of Medicare (and presumably the people considering this test strip decision), an A1c of 11.4 percent is totally fine for people with Type 2. (Again, I can send you the paper that states this.) I am not going to get into Medicare’s firm belief that the path toward complications is different for Type 2s than it is for Type 1s, and thus tight control is less important for people with Type 2. Instead, for now I will simply emphasize the near term dangers of having people incapacitated by high blood glucose levels on the streets. Can you imagine what might have happened if I’d attempted to drive a car? Forget the possible human tragedy that could have ensued — it would have been *expensive* to the healthcare system if I’d hit someone or run into a wall. Blood glucose matters. 

And then there’s the point that diabetes educator Gary Scheiner likes to make, but that few people ever consider in the argument over control: having high blood glucose makes you feel bad. It makes you sleepy and cranky and prevents you from thinking clearly (therefore making you less productive at work). There’s the obvious economic cost to employers and society of a loss of productivity — but there’s also an emotional cost to high blood sugar. Doesn’t it matter, at least a little, that having high blood glucose makes you feel like crap?

I find this entire issue terrifying, because it seems that the people in charge of making coverage decisions do not truly understand the experience of living with any form of diabetes or the importance of regular testing, let alone the issues about test strip quality (visit StripSafely.com for more info on that very important issue and how recent Medicare coverage decisions may have catastrophic effects on quality and safety). I encourage everyone to read the petition and consider signing it. Without patient pushback, this type of poorly considered cost-cutting has the potential to hurt us all.

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How Does Your Diabetes Compare?

MyGlu.com, the online diabetes community for people with Type 1 diabetes, just came out with a cool new tool that allows you to compare your own experience living with diabetes to that of more than 26,000 other people who have Type 1. (Thanks to David and Ginger at Diabetes Daily for spreading the news!) You can see it for yourself at https://myglu.org/exploration (you need to have an account, which is free). 

Among other things, it allows you to see how your current and average A1cs compare to those of the other people with diabetes who have responded to Glu’s questionnaires, what percentage of people use multiple daily injections versus a pump, and how many people are on CGMs. And if you want to drill down deeper, you can also use the “add a condition” feature to cross reference some of this information; for example, you could see how many people on a pump had a particular average A1c as opposed to people on multiple daily injections, to get a possible sense of how helpful and effective different treatments and technologies are, and perhaps decide whether you’d like to experiment with something new. I think it’s a fascinating tool, and could be useful both to patients and doctors (in fact, I hope doctors see it, since it might affect their treatment recommendations as well!).

While I’m looking forward to exploring the data more myself, my first instinct was to use the tool for a more psychological reason: I wanted to see how my own A1c compared to other people with Type 1 (and to other people who are motivated enough that they bothered to participate in MyGlu). As readers of my blog have probably figured out, I tend to be very self-critical and am often hard on myself, and automatically assume that everyone else is somehow coasting along just fine while I still find it a struggle to eat breakfast. (This leads to a fun round of questions: what do they know that I don’t know? Should I be eating differently? Is it wrong that I like strawberries? Is there any way I could avoid carbohydrates completely? Am I a weak and horrible person because I sometimes put a bit of maple syrup on my yogurt? Etc.)  So I was surprised (and comforted) to see that, if diabetes were a high school class, I would be getting an A.

I mean, granted, diabetes is not a high school class, that grade would be on a curve, and the fact that I have a lower A1c than the vast majority of people does not mean anything about whether my degree of control is the healthiest it could be for myself (hah! you now can see why I’m in therapy!). But still: it did put things in context a bit for me, and helped me to recognize the fact that diabetes is really freaking hard for EVERYONE who has it. Often this doesn’t come across in public discussions of Type 1, in part (I think) because we feel such a pressure to show the world that we can do anything we want to that we act like diabetes isn’t a big deal. A quick look through the numbers shows what most of us know personally: that that’s simply not true.  

Anyway, if you’re interested, I’d love to hear other people’s thoughts on what insights can be gleaned from Glu’s database. (Leave ‘em in the comments!) As for me, I’m going to try to give myself some emotional credit for the fact that, while I’d always like to be doing better, I already am doing an extremely good job. (The question is why that’s so hard for me to internalize – oh, diabetes, you are such a cruel disease for perfectionists.) 

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An addendum to my mugging post (this has nothing to do with diabetes, but which I feel the need to share because it was so deliciously unpleasant): I happened to decide to replace my phone on a day when the Apple Store’s computer systems were down. (Yes, it was ironic.) Two hours later, the very nice manager who’d been trying to help me called a nearby Verizon store to see if they had the phone in stock. They did, and she got them to agree to waive the $30 upgrade fee that Verizon charges when you buy a phone in person (oh, Verizon, your customer service is right up there with Comcast!). So I go to Verizon, feeling almost hopeful that I will get the problem resolved, but as soon as I walk in I suddenly remember why I consider such stores to be deep circles of hell. First, their cheerful salespeople completely denied having spoken to anyone from the Apple Store (despite the conversation having taken place 10 minutes beforehand). Then they tried to upsell me a new service plan and, when I begged them not to push me (I was very close to punching someone), they tried to sell me a phone case, and then, when that didn’t work, they tried to sell me a replacement phone for my 92-year-old great aunt. Not kidding. While this was happening, I realized that part of the reason I was feeling insane was that, in addition to a dozen or so chirping phones, there were two different songs playing at the same time at the same volume (not mashups; two entirely separate songs on different stereos) — first Gotye’s “Somebody That I Used to Know” with Talking Heads’ “Once in a Lifetime,” then the Cure combined with Shawn Colvin’s “Sunny Came Home.” This was just too much. 

“Doesn’t it, you know, MAKE YOU KIND OF CRAZY to have two songs playing at the same time at the same volume in the same store?” I asked the salesperson, who was busy trying to figure out if he could sell me earbuds. 

“We just like to keep things lively,” he said, as cheerful as an elf. “Some people love it, some don’t!”

I gave him a look that my husband likes to refer to as “the poop face” (dead eyes, staring deep into his soul with silent contempt and disgust). Then, after he had sold me the phone with the $30 upgrade fee and without actually restoring my settings (requiring a later call to Apple), he bid me farewell, I kid you not, by saying, “Try to keep an eye on this one!” 

It was too much. I reeled around, looked him in the eye, and snarled: “I was keeping my eye on my phone. A man got out of a car with a GUN and STOLE it from me.” 

And then, as I left the store, I realized I should be grateful — not just for being alive, but that I wasn’t armed myself.

Anyway, thank you all for your comments and kind words — I really appreciate them.

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