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

Arizona Reinstates Medicaid Insulin Pump Coverage: A Triumph in Patient Advocacy!

Great news: the Arizona State Legislature has approved the restoration of insulin pump coverage for adults in the state’s Medicaid program (known as AHCCCS)! This is partially thanks to an enormous patient-led Twitter campaign over the past few weeks to educate and encourage Arizona state politicians, and I couldn’t be more thrilled.

Sample screenshot of diabetes advocates reaching out to the AZ Senate

Background on why this is such great news: a couple years ago, Arizona stopped covering insulin pumps for adults on Medicaid. This meant that if you were on Medicaid and you either needed or already depended on an insulin pump, the state would stop paying for it as soon as you turned 21. Considering the proven benefits of insulin pumps (see a round-up of studies here — just select “clinical summaries”), this was a really unfortunate — and economically foolish — decision. Insulin pumps are instrumental in helping people with diabetes to avoid long-term complications, and their long-term benefits outweigh the short-term costs. 

As you can see in my previous blog post on the subject, there’s been a lot of back and forth going on — first the House included insulin pumps in its proposed budget, then the Senate stripped it out, then the House rejected the Senate’s budget, then they went to reconciliation, then the New York Times published its unfortunately timed piece that made it seem like insulin pumps were superfluous gadgets . . . and then yesterday, against pretty substantial odds, I got news that the legislature had included insulin pump coverage in its final budget. (And then I got all teary thinking about how amazing it is that our efforts on Twitter might have played some role in helping other people with diabetes get access to pumps.) 

Interestingly, none of the other so-called “optional” health-related amendments included in previous versions of the budget (including dental, podiatric, chiropractic and broader orthotics coverage) survived — which implies that the patient advocate Twitter campaign really made a difference in demonstrating the importance of insulin pumps.

Some important (and exciting) details: 

-there is no spending cap on the benefit

-this is not a one-year fix — the benefit will remain in place unless a deliberate action is taken to remove it. Considering that the total cost to the state is an estimated $105,000 per year (less than the cost of 6 hypoglycemia-related hospital admissions, according to the American Journal of Managed Care) I am hopeful that this will not happen.

Governor Brewer is expected to sign the budget by Friday. Technically the state fiscal year starts July 1, but its Medicaid program operates on the federal schedule (which starts October 1) — unclear how that’ll affect the start date for coverage. But sit tight: it’s coming! 

I want to extend a huge thank you to the legislatures who helped make this happen, including AZ Representative Heather Carter and Senator Dr. Kelli Ward (who are two of the people I know were the most supportive — though I’m sure there were others and I thank them as well). 

If you would like to express your appreciation on this issue, consider sending a Tweet to: 

@azhousegop @azsenategop @heathercarteraz @kelliwardaz

As well as: @andy_tobin @frankpratt @jeffdial @dgoodale @EthanforHouse @votemccomish @adamdriggs @bob_worsley @senstevepierce

And thank YOU, the diabetes community, for helping spread the word about this issue. When you combine the success in Arizona with last week’s first-ever patient/FDA live chat AND the number of insulin pump-related comments on the Medicare docket on competitive bidding (78 out of 179 are about insulin pumps!), it’s clear that patient advocates can make — and are making — a difference.

On the right is Bennet Dunlap, father of two children with Type 1 diabetes, and creator of StripSafely.com, a patient-led grassroots effort to bring awareness to the issue of glucose meter and test strip accuracy. In the middle is Courtney Lias, PhD, the Director of the FDA’s Division of Chemistry and Toxicology Devices – the division that regulates the blood glucose meters that people with diabetes rely on each day. On the left is Dr. Helene Clayton-Jeter from the FDA’s Office of Health and Constituent Affairs, which organized and coordinated the event, in collaboration with Dunlap and the FDA’s Office of External Affairs, as part of its Patient Network program.

 

Sample Comments in Response to CMS (Medicare) Call for Public Comment on Competitive Bidding (Note: this was not supposed to be exclusively about insulin pumps)

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FDA and Patient Live Chat: The Recap

As I mentioned earlier, today marks a huge day in the diabetes community’s collaboration with the FDA, the government agency in charge of regulating America’s drugs and medical devices: Courtney Lias, the director of the division at the FDA that regulates blood glucose meters, insulin pumps, continuous blood glucose meters and other diabetes-related technologies just did a live-chat with the inimitable Bennet Dunlap, creator of Stripsafely.com and tireless patient advocate. The moderator was Helene Clayton-Jeter, one of the masterminds at the FDA’s Office of Health and Constituent Affairs, which is responsible for the FDA’s Patient Network website — a cool resource which houses the agency’s diabetes web page, among many other things.

The subject? How people with diabetes can work with FDA to ensure that we all have access to safe, high quality blood glucose meters and supplies. 

From left to right: Clayton-Jeter, Lias, and Dunlap.

 

 

 

 

 

 

 

 

 

 

 

 

Here’s a quick recap:

First, if you missed the live-chat and want to see it, it will be available soon from the FDA’s patient network site for diabetes – which is also where you should go to sign up for updates on how the FDA is collaborating with patients about diabetes-related issues. As noted, it’s definitely worth checking out. 

Second, if you think this chat was a good idea (spoiler alert: I think it was an AWESOME idea), please please let the FDA know. (They like affirmation, too!) You can do so by sending a tweet to @FDADeviceInfo (and perhaps use the hashtag #DOCasksFDA). Also please comment on this post. This was a really innovative and unusual thing for them to do, and it’d be nice for them to hear our feedback. (Over 500 people signed up to watch/participate in the chat, which hopefully will also send a positive message!)

A bit more info: I have written about the FDA’s proposed draft guidance for meters and test strips before, so please check out that story (or visit StripSafely or see Mike Hoskins’ summary of the issue) if you want the background. In short, a “draft guidance” document is basically the FDA’s thoughts on what factors it will consider before deciding whether or not a particular meter (or other diabetes technology) will be cleared for sale. The last (and, incidentally, first!) guidance on the subject was published way back in 2003 — and was developed with very little direct patient input. So it’s now our chance to make our voices heard. 

The deadline for commenting has been extended to May 7th. So please, PLEASE submit your comments to the FDA’s draft guidance! You can find out how to do so (and read some suggestions of what to say) here. 

In addition to those suggestions, I also suggest that you consider requesting that the FDA do something about the accuracy of meters currently on the market. At the moment, the draft guidance is written in such a way that today’s meters would be grandfathered in, regardless of whether they have accuracy issues. During the call, Lias made it clear that if the patient community wants the FDA to incorporate more proactive language — that is, take affirmative action on today’s meters, rather than simply let them “sunset” out, we need to say so. 

I also anticipate that the FDA might get a lot of push-back about its proposed requirement for accuracy information to be published on the front of the box. This is a HUGE deal for people with diabetes, since it would a. make clear that not all meters are equally accurate, and b. provide an incentive for manufacturers to prioritize accuracy when developing new meters. It may also be possible to leverage this information to influence which meters are (and are not) covered by insurance payers. If you agree, PLEASE make this clear in your comments to the FDA. Consider including something like “I applaud FDA for its proposed front-of-box labeling requirements for blood glucose meters. This will allow customers to make educated decisions, and motivate manufacturers to improve the accuracy of their products. This is an essential part of the proposed draft guidance and should be included in the final version.”

Likewise, if you believe that the FDA should have a system to ensure that meters and strips continue to meet accuracy standards even after they’ve been cleared for sale (i.e. that there should be a post-market surveillance program), please indicate that, too! (“I believe that there should be a post-market surveillance program to ensure that meters and strips continue to meet the accuracy standards on which their FDA clearance was based.”) The FDA is trying to work with the patient community on this issue, and the more we can emphasize this issue and support the FDA in its attempts, the better.

And also: please be sure to praise the parts of the draft guidance that you like. This is not just a request from the FDA for praise; it’s essential in order to make sure that the stuff we like doesn’t get stripped out. As Lias said during the chat, “First and foremost if you agree with something in guidance document please include it. If someone else disagrees we’ll only hear their side.”

Lastly, be sure to add your personal story! It may seem strange to do so, given the formal tone that many comments can take, but the FDA really, really wants to know how the drugs and devices it regulates affect the lives of patients. So if there’s anything you wish the FDA knew about how you use your blood glucose meter, or which features are most important, or what you wish the draft guidance had said, speak up! Just as there are no stupid questions, there are also no stupid comments. Make it personal.

In the interest of brevity, I’ll end this (so you can go comment on the draft guidance — it takes two minutes!). If you have additional questions on this issue, leave them in a comment to this post and I’ll try to answer them.

In closing, I’ll leave you with these comments from the FDA’s Courtney Lias:

“It’s really been great to hear how engaged the patient community is on this issue. We [at FDA] want to get a good sense of what you want so we can try to get devices out there for you that meet your needs better than the ones you’re getting now. . . . We want patients to tell us what they want and what they need.” 

The ball is in our court. Submit your comments NOW. And let’s extend a huge thank you to StripSafely.com’s Bennet Dunlap and the FDA’s Courtney Lias and Helene Clayton-Jeter for putting together such a revolutionary and inspirational event. It’s great to be working together.

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Diabetes and the FDA: A First-Ever Live Chat

Ain’t no party like an FDA party.

I’m being serious. This Monday, March 31st, the FDA’s Courtney Lias and StripSafely.com‘s Bennet Dunlap will be hosting a live chat about blood glucose meters – and you’re invited.

Lias is the director of the division of toxicology and medical devices at the Food and Drug Administration (that’s the FDA department that oversees blood glucose meters, pumps, CGMs and other diabetes technologies). As I’ve mentioned before, I’ve heard Lias speak and have been extremely impressed by her desire to engage with the patient community — she seems truly committed to listening to and connecting with the people who depend on the technologies that her department oversees. If you ask me, that’s pretty darn cool.

And Bennet, should you not already know him, is one of the masterminds behind StripSafely.com. Father of two kids with Type 1, personally at risk of developing Type 2 himself, he writes the blog YourDiabetesMayVary and is a tireless advocate for people with diabetes. Spend five minutes with him and you’ll walk away not just with a StripSafely lapel pin, but with a newfound belief in the power and importance of patient engagement. (Bennet was one of the instigators behind last week’s push to encourage Arizona’s house of representatives to reinstate insulin pump coverage for adult Medicaid recipients — an effort that, thanks to the participation of people like you, appears to have been successful!)

Bennet, too, is pretty darn cool. And he’s really, really involved in the really, really important effort to figure out a way to ensure the accuracy of blood glucose meters and test strips. This is a big issue at the moment, not just because of the issues with test strip coverage caused by Medicare’s recently rolled out (and disastrous) competitive bidding program for diabetes mail order supplies, but because of ongoing accuracy issues with meters, and the lack of a post-market surveillance program.

So here’s why I’m excited: on Monday, March 31st between 1:30 and 2:30 Eastern time, Dr. Lias and Bennet are joining together to host a ground-breaking live online chat about glucose monitors and test strips! You can read more about the chat — and sign up for it — here. To quote from the FDA’s announcement: 

  • “Do you want to learn more about the role of the FDA in the regulation of medical devices, such as glucose monitors and test strips, used in the management of diabetes?
  • Do you want to learn what the FDA is doing to increase the accuracy of blood glucose monitors and test strips?

    When you participate in this friendly online chat, you will:

    • Enjoy an informal, open discussion with a fellow patient advocate, CDRH subject-matter-expert and others in the diabetes community.
    • Learn more about the role of the CDRH, specifically the Office of In Vitro Diagnostics and its work to ensure the safety and effectiveness of medical devices used in the management of diabetes.
    • Get your questions answered about the newest FDA draft guidances, which are proposing new recommendations intended to improve the accuracy and safe use of blood glucose monitoring test systems, giving healthcare providers and people with diabetes better tools to manage blood glucose levels.

    Whether you want to just listen to the interview, ask relevant questions about the medical device regulatory process or just speak your mind on the newest draft guidance document…. you should join in the conversation.”

Translation: this is your chance to communicate with (and ask questions directly to) the FDA about its approach toward the medical technologies and devices that we rely on each day. (Note: this is not about diabetes drugs, just devices.) It’s the first event of its kind, and I encourage everyone who can to sign up  – and bring some questions!
 
Also, if you haven’t done so already, tomorrow’s chat is a great opportunity to figure out what you’d like to say in your comments about the FDA’s new draft guidance for blood glucose meters — a document which outlines the FDA’s new proposed standards that products would have to meet before being cleared for sale. The period for public comment closes April 7 and it is very important for us in the patient community to submit our thoughts and suggestions, so that they can be considered by the FDA when it drafts its official guidance documents. I’ve explained this in more detail and listed some of my own draft comments — which you can feel free to crib from — in my previous run-down of the FDA’s draft guidance; you can also learn more at StripSafely.com. According to Bennet, there are already at least 318 comments on the draft guidance comments — let’s see if we can reach 500! (Many of those 318 are likely from test strip manufacturers, so it’s especially important for us to add patient voices to the mix.)
 
In short: Monday marks the first-ever patient/FDA live chat on diabetes, and will give you a chance to ask your own questions about how the government regulates blood glucose meters and other diabetes devices, and have your suggestions heard. It’s free, it’s from 1:30-2:30 eastern, and it’s going to be great.
 
You can sign up here.
 
Will you join me?

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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. 

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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.

 

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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. 

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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.

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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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