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

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”:

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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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What Being Mugged Taught Me About Diabetes

It happened suddenly, as such things by nature tend to do: I was standing on the corner outside my friend’s house in California on a bright Sunday afternoon, chatting on the phone with my husband, whom I hadn’t spoken to in a couple days. We were talking about diabetes, of all things  – it was one of my “revelatory” moments, which occur roughly twice a year, where I suddenly am hit with a palpable sense of not just how great of a burden it is to live with diabetes, but of just how isolating it can be, how I don’t talk about it with friends, and how even the people closest to me have little realization of just how difficult it is to manage, every minute of every day. Peter was listening and affirming, and I was thinking of how lucky I am to have a partner with whom I can share this kind of stuff — he, of all people, understands what it’s like, and just speaking with him was making me feel more comforted and less alone.

Then I saw him: a young man — possibly a teenager — walking toward me directly from the street, with the sort of purpose and direction that most people don’t display if, say, they’re just asking for the time. My stomach began to drop, but before fear could even register, I saw it – namely, a gun — clutched in his left hand. It was shiny and black and silver. My instincts had been correct: this was not a request for the time. 

I’ve thought about getting mugged, many times, actually — it’s been a long-time fear of mine — and have always wondered how I would react. Would I be so frightened I’d be unable to speak? Would I have a brief conversation with my mugger in which I ask him precisely what he wants and hand it to him in a polite, if terrifying transaction? Would I begin screaming, a sound which I don’t think I’ve ever actually made? In a moment of complete terror, what would my reaction be?

Unfortunately, I now can answer that question. First, one side of my brain — the part that’s responsible for managing cocktail party conversations and is not usually a crime victim — asked an innocent question: “I wonder if that gun is real.” 

Thankfully, I actually do have a life-preserving instinct, and that part of my brain responded immediately and forcefully: “This is really not the moment to ask him to prove it.” 

With that realization in mind, I then discovered what “Crime Victim Catherine” (different from, though perhaps related to Police Officer Barbie) does next when threatened: I start to shout obscenities. The guy said something to me quietly, presumably something along the lines of “Give me your phone,” and I responded — by which I mean yelled — “What the FUCK are you doing?”

The answer was, of course, pretty obvious given the context, and I flipped back into self-preservation mode: I threw my phone toward him like a baseball and exploded with a string of expletives that proves that in emergency situations, my mind defaults to four-letter words. Not “Help!”, not “Fire!”, but, “FUCK YOU FUCK YOU FUCK YOU YOU MOTHER FUCKER FUCK YOU.” 

God knows what he was thinking in response to this outburst, but thankfully he didn’t approach me (or, for that matter, shoot). Instead, he scooped up the phone, hopped into a waiting car, and he and his accomplice drove away, with me delivering an extra “FUCK YOU,” complete with middle finger, in their direction. Then I ran to my friend’s house and called the police. 

***

When I spoke to the cops, who arrived several minutes later, I was able to provide his race, his rough age, the color of his sweatshirt, the description of the gun (and accurately, should there be any defense lawyers reading this!). But that was about it. And as they kept asking me questions, I realized that I was doing something that is objectively completely ridiculous: I was feeling bad about not having done a better job of being mugged. 

I’m serious. I didn’t see his friend’s face, I didn’t notice his pants (“I stopped at the gun,” I told the officer), and I didn’t take note of the make and model of the getaway car. How was this possible? Crime Victim Catherine would totally have known this stuff — and then some. She wouldn’t have just noticed the type of car they were driving; she would have memorized the license plate. She would have taken note of his sneakers, and somehow seen through the car’s windows from 20 feet away and made a mental (if not pencil) sketch of his accomplice’s face (which was not even turned toward her at the time). She would have taken note of the shape of his eyes, the details of his hair, perhaps even inquiring — between the “FUCK YOU”s — if he’d mind answering some brief questions about his height and weight. 

Needless to say, I did none of these things . . . because I was being mugged. Instead, I had responded quickly, given him what he wanted in a way that made him want to get away with me, and — most importantly here — NOT BEEN FUCKING SHOT. This was, by all accounts, an extremely successful mugging, for all involved (I’m alive; he got an iPhone 5S). It is absolutely ridiculous that I ever, ever would even have indulged in Crime Victim Catherine self-criticism, because I am here and I am typing and I am fine and I am alive and I am so, so, so grateful and relieved. It really couldn’t have happened in any better way. 

***

Perhaps you are wondering what getting mugged can possibly teach you about diabetes (other than demonstrate what kind of adrenaline does to your blood glucose). Well, perhaps oddly, I’m starting to think that there’s a lot. Because in some ways, getting diagnosed with diabetes is a lot like getting mugged: you didn’t ask for it, you certainly didn’t want it, and the goal is to try to survive. 

I’ve had diabetes for nearly 13 years now, and it’d be accurate to say that every day is still a struggle. Not a oh-my-god-it-could-kill-me-in-this-moment kind of struggle, but definitely a wow-it’s-been-more-than-a-decade-and-I-still-can’t-get-a-consistent-response-to-eating-breakfast kind of way. It’s exhausting and it’s frustrating. I manage it by eating as healthily as I can, exercising regularly, meditating, writing, and trying to take physical and emotional care of myself. I don’t have complications, I feel healthy, and my A1cs are consistently below 6.5%. 

And yet, I’m constantly criticizing myself. Why can’t I figure out how to handle breakfast? Why do I still have trouble with morning exercise? Why can’t I commit to a lifetime of eating exactly the same thing at exactly the same time every day? Why aren’t my A1cs even lower? Then I start wondering whether I’m really trying hard enough. I mean, maybe I should be avoiding carbohydrates entirely, existing on a diet of nuts and seeds. Maybe I should refuse to go out to dinner with friends because of the effect it might have on my blood sugar, or never exercise *too* hard because my blood sugar might go high. Maybe I should take a break after lunch every single day and walk an hour (or more!) to help ward off post-prandial highs. No, even better, I could give up my desk job as a writer and become, I dunno, a general contractor. Or a construction worker, or some other profession that might not have anything to do with my dreams or desires (or areas of expertise), but would be better for my blood sugar. And I should probably also never travel, which messes things up, or take on stressful assignments, or catch a cold. In other words, maybe I’m doing a bad job of being a diabetic. 

It’s a surprisingly easy spiral to get into, but it’s just as absurd as criticizing myself for not doing a “good job” of being mugged. First of all, I did do a good job of getting mugged: I’m alive. What other possible outcome could have been better? Likewise, I also do a good job at diabetes, because I keep myself healthy while also managing to have a life. In fact, the isolation that I was talking with about Peter at the moment when I was robbed is itself proof of my success: I do such a good job of balancing life with diabetes that, from the outside, it’s difficult to tell just how fucking hard it is. 

I’m home now, and am feeling okay. Oddly, diabetes is bothering me more at the moment than being mugged (I’m trying to neutralize the memory of the actual incident by picturing a scene where I throw him the phone, and then we both break into a tap routine — weird, and yet surprisingly effective). But I’m trying to take both things in stride. In both situations, I did (and do) my best. And the result, in both cases, is that I’m alive and happy. And so instead of getting mad at myself for not having done a “better job,” whether it be as a crime victim or a diabetic, I’m trying to be more gentle towards myself. I’m also adopting a new motto: “Don’t be an asshole.”  It’s a message that I’d definitely like to suggest to my mugger — but it also applies to my relationship with myself. 

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A Diabetes Exercise Success Story

I write so many blog posts about my difficulties with diabetes and exercise that I feel the need to share an actual success story. Yesterday was a beautiful fall day in Pennsylvania, and my husband and I decided to take part in the annual Covered Bridges ride in Bucks County — a gorgeous, if hilly, 33 miles through fall foliage. 

Peter and a bridge

I’ve done a lot of biking with diabetes; in fact, I was diagnosed with Type 1 just three months before I was scheduled to take part in a cross-USA bike ride for Habitat for Humanity. I was likely still honeymooning, but biking 70-80 miles a day for 63 days with newly diagnosed diabetes was a challenge, to say the least (I’ll admit that I got pretty good about finding people who’d let me hitch-hike with my bike). The upside, though, was that exercising for eight to nine hours a day gave me tremendous leeway with what I could eat.

Suffice to say that the 13 ensuing years have not involved spending my workday biking, but I always think of that experience whenever I’m going to do a long period of exercise, and I take a couple of steps to try to get a good outcome. Namely: 

1. An hour (or ideally 1.5 hours) before I start, I set a temporary basal rate of 50 percent for the time I anticipate exercising, plus an hour or two afterwards. 

2. I test before I start and every hour or 45 minutes into the exercise (and I carry my CGM).

3. I eat more carbs than normal for breakfast and I under-bolus for them. I normally also eat several tablespoons of peanut butter, though I don’t know how much of that is a diabetes tactic and how much is a sign that I welcome excuses to eat peanut butter. 

4. I carry a variety of sugar sources with me — yesterday I had glucose tablets and weird Gatorade chew things (I also usually carry vanilla bean Gu), and I make sure to drink a lot of water. 

5. If I eat carbs at rest stops (which I recommend doing because I, at least, can definitely feel the energy boost when I start biking again!) I take a very, very, very small amount of insulin to cover it. Yesterday for example, I ate two Oreos, a random cookie, and half a banana at a rest stop (note: I do not normally eat cookies) and took 0.4 units for them, and was fine. 

6. I keep testing after I finish, and I continue to slightly underbolus for several hours afterwards. 

As always, this represents my personal experience and is not any sort of medical recommendation. But yesterday it actually worked perfectly. After slightly rising after my peanut butter and strawberry breakfast, my blood sugar remained between 70 and 110 mg/dl for the entire ride (my Dexcom thought I’d gone low at one point, but finger sticks showed it was incorrect). We went out to brunch with my parents afterwards, and I ate — wait for it — a piece of a bagel (!!!!). I mean, like not a whole one, but more bagel than I normally would consume (which would be 0 bagels). Blood sugar was totally fine. 

We finished our day by going to an orchard to pick apples (Stayman Winesaps are in season, which almost make winter worth it). It was a fantastic weekend, and such a relief to have diabetes behave itself. Now, if only the Covered Bridges ride were *every weekend*. . . . 

(Anyone else have suggestions for how to handle longer-than-normal exercise sessions?)

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When Diabetes Technologies Fail

Does anyone else remember the scene in the early 90s movie, Reality Bites, where Winona Ryder’s character is on a job interview and someone asks her to define the word “irony”? And she’s in an elevator and she’s unable to get out anything coherent before the door closes, and so she doesn’t get the job? (And yet somehow ends up with Ethan Hawke, if memory serves.)

Being a bit obsessed with words, I think of that scene embarrassingly frequently. It’s a dorky daydream: I pretend that I am in the elevator instead of Winona, and as the door closes I blurt out, “It’s when the reality of a situation doesn’t match your expectations!” Then the door slides open and I get the job. Like I said, I have the fantasies of a nerd. 

Anyway, I bring this up because last week I was subject to a severe case of diabetes irony, from which I’m still recovering. I was at the 2013 Joslin Diabetes Innovation Summit, an event presumably geared toward the cutting edge of diabetes technologies and care. Judging from the vendors present (Dexcom, Tandem, etc), I expected to come away psyched about the next generation of diabetes devices that will hopefully soon hit the market. And I did, mostly. 

I say mostly because as I was rushing to get my train home from the conference, my insulin pump tucked into my bra (as is often the case when I actually dress nicely), I was reminded of the human variables that hold technology back. This was indicated, quite succinctly, by a disturbing vibration against my sternum. Not the single-buzz, “I just finished delivering a bolus” vibration, but the ten or so quick-in-succession vibrations that indicate there’s something wrong. I pulled it out, and saw one of my least favorite messages to see on my insulin pump late on a Friday afternoon while on Amtrak: “Button Error.” 

I immediately knew that my pump was a goner — this is my third similar failure in approximately a year, one of which caused me to miss a close friend’s wedding ceremony. (Ladies, if you wear your pump in your bra, apparently it’s important that the buttons face out. Got that? Buttons out!) 

Luckily this time there’s no wedding — but I was planning on eating dinner. So I get on the phone with my endocrinologist’s office and eventually am able to figure out how much Lantus to take. I also get my pump company to send me a replacement for the next day. I’m aware that going from my pump to shots is always rough, but at least it’ll be over in 24 hours when I get the new pump. 

So it arrives, I fill it with insulin and go about my business, which that day involved building garden beds on an unseasonably warm day (note: not my normal Saturday activity). Have dinner, which involved a bit of bread, so I wasn’t immediately surprised when my glucose was high. But oddly, I couldn’t get it down. I was high Saturday night and all day Sunday, and then on Sunday night was woken up 4 times by my CGM. 

Assuming there was something wrong with my infusion site, I switched it out Monday morning, took a correction bolus, didn’t eat breakfast, and walked a mile and a half to work — only to find my blood glucose even higher than when I’d woken up. And then it occurred to me: I’d had my insulin vial with me on that hot day in the garden. It must have denatured. I rushed home, got a new vial, took a shot, switched the insulin in my pump, and sure enough, I’d identified the problem. . . just in time for my Dexcom sensor to fail. 

It was a very stressful couple days — definitely not what I’d expected the follow-up from the Innovation Summit to be — and it reminded me of a pesky fact that weighs down progress in diabetes care: just how human the disease can be.

For example, it might seem obvious in retrospect that my insulin had denatured — perhaps you’re asking yourself why I waited a day before even changing the infusion set. But that 20/20 hindsight doesn’t take into account all the other variables that could have contributed to the problem. Maybe my blood glucose was high because I’d spent two days at the conference sitting on my butt with no exercise. Maybe it was high because I’d had some of the delicious bread my husband made. Maybe it was high the next day because that bread had butter in it, and the fat could have slowed its absorption. Maybe I was pre-menstrual. Maybe I was getting sick. Maybe I was tired, and it was affecting my blood glucose. Also, my blood sugar never got higher than 240 mg/dl or so — so it wasn’t outrageously clear that there was a non-food-related problem. Only after working through all these possibilities did I go to the infusion set. And it was only after THAT failed that I thought about the insulin — which, frankly, surprised me, since in my 13 years of diabetic life, I’ve never had insulin denature. (And that includes seven months spent traipsing the world with inconsistent refrigeration.) 

It makes me want to put together a flow chart-style quiz of possible diabetes failures (see Esquire Magazine’s Charlie Sheen example below). Questions would include things like, “Did you just eat a syrup-drenched waffle?” (If yes, go to “Uh,  maybe you need insulin?!”), and “Did you just catch your pump on the silverware drawer?” (If yes, go to “You need to change your set — and your kitchen hardware.”) Anyone else got ideas? We’ll never be able to pin down all the variables in diabetes — and technologies, no matter how great, will never be foolproof — but we might as well at least try to establish a tool to determine which of the seemingly infinite variables of diabetes is responsible for screwing up our day.

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Medtronic’s MiniMed 530G System with Low Glucose Suspend: FDA Approved

Medtronic just announced FDA approval of its MiniMed 530G insulin pump with low-glucose suspend, the first step toward a full-blown artificial pancreas. How’s that for thrilling news? 

I just got off a conference call with Nancy Katz, Medtronic’s vice president of consumer marketing and Mark O’Donnell, its vice president of regulatory affairs. They were clearly ecstatic, and I and the other patient advocates on the call were as well: this is an enormous first step toward the approval of a closed-loop system, the much longed for artificial pancreas that would so greatly improve patients’ lives.

In case you aren’t up on the latest in the world of insulin pumps, here’s the background: as of today, America’s insulin pumps do not make any decisions of their own. Some include “bolus wizard” features that use a patient’s self-determined insulin-to-carb ratios and sensitivity factors to calculate a suggested insulin dose, but the pump does not administer insulin until a patient tells it to. Likewise, if your blood sugar is low, today’s pumps do not stop delivering basal or bolus insulin unless the patient intervenes. While some pumps can display CGM data on their screens, the pump also doesn’t take any action on that information. All dosing and suspension is the patient’s responsibility.

As of today, part of that statement is no longer true: the MiniMed 530G system is the first pump in America to be approved for what’s known as “low glucose suspend.” This means that if your CGM or compatible blood glucose meter says that your blood sugar hits a preset level for hypoglycemia — which the 530G allows you to set anywhere between 60 mg/dl and 90 mg/dl — and you don’t respond to its warnings, it will suspend basal insulin delivery until you intervene. 

The benefit to this is obvious: if your blood glucose is already low, adding more insulin can make a dangerous situation worse. It’s easy to imagine situations (say, overnight) where shutting off insulin delivery could prevent a medical emergency. As such, it’s been frustrating that the Minimed Veo pump — which has low-glucose suspend — has been available in  Europe since 2009. But now, thanks to the FDA — which I’ve repeatedly heard described as being extremely committed to getting new diabetes technologies to market in as timely a fashion as it can — we are one step closer to the goal of a fully closed system. What’s more, and as an indication of its commitment to this area of development, the FDA itself came up with a new product device classification for the system:  ”artificial pancreas device system, threshold suspend,” a word choice that to me gives a heartening sense of where the FDA anticipates technology is heading. 

Along with the new pump, Medtronic also got approval for its new Enlite CGM sensors. These new sensors are approved for up to six days of wear (as opposed to three) and have a 31 percent improvement in accuracy over the current generation (as well as 38 percent shorter in length and 69 percent shorter in sensor size [not transmitter]). 

At the moment the FDA approval is only for people ages 16 and up, but Medtronic is filing for pediatric approval, as well as approval for it to be integrated with its MySentry system. Its retail price will be $7,350 but Medtronic anticipates that most people with insurance coverage will pay between $500 and $1200 out of pocket; there also will be a program to help current MiniMed pump users to upgrade to the new system at a discount. (For updates, you can check Medtronic Diabetes’ website, its Loop Blog, or follow it on Twitter.)  

As the Medtronic folks readily admitted, this is not actually an artificial pancreas in any real sense of the word, despite the FDA classification — as Katz put it, “it’s a first step in a journey.” The system isn’t predictive, for example, meaning that it only shuts off insulin delivery once you’ve already reached your self-defined threshold of a low. (The fact that you can set your “low” at 90 mg/dl would seem to me to provide a possible workaround, but a real predictive system will actually make decisions based on how fast your blood glucose is dropping. That sort of system is already in the works.) And of course, this system won’t proactively give you any insulin boluses; it just suspends insulin delivery. 

But nonetheless. I remember speaking with JDRF’s Aaron Kowalski  in January of 2010 about the Artificial Pancreas Project; he said that the goal was to get a system to the commercial market within the next four years. And despite the fact that this is only a first step in a long road, I have to admit that when I got the press release, it brought tears to my eyes. Thank you to Medtronic, the FDA, and everyone else working to make the dream of a closed loop system one step closer to reality. 

Here’s a link to the Medtronic press release. (They’re taking orders for the new system now, though it won’t ship for a while, until Medtronic feels it’s adequately trained healthcare providers and salespeople about how to use it.) 

The other patient advocates and I on the call agreed on the importance of expressing to the FDA how much patients appreciate its commitment to bringing new diabetes technologies to market as quickly as safety will allow. If you’d like to send a message to the FDA, please leave a note in the comments section below and I’ll forward it to the relevant people.

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Diabetes and Morning Exercise: A Possible Solution?

I have great difficulty balancing morning exercise with diabetes — a frustration I have written about previously, here and here. Whereas exercising in the afternoon or evening will typically cause my blood glucose to plummet, exercising in the morning makes it spike — making me feel horrible during the workout itself, and also messing up my morning. 

Recently, ASweetLife’s own Robert Scheinman emailed me about this, and together we tried to brainstorm reasons this might be happening. The most likely culprit would seem to be that my liver is particularly fond of dumping out extra glucose in the morning, which means that the harder I work out, the higher my blood glucose tends to go. 

I’d thought of this idea before, but emailing with Robert made me realize something else: whereas I usually take Symlin nearly every time I eat – the medication that slows your stomach emptying and prevents glucose-dumping by the liver — I typically do not take Symlin on the mornings when I work out. My reasoning was simple: the fact that Symlin slows your stomach down means that it makes it much harder to recover from lows because your body doesn’t absorb the sugar (the solution is to suck on things so that the glucose absorbs through the tissues of your mouth itself, but that takes a while). Since exercise can sometimes cause scary lows itself, I didn’t want to add Symlin to the equation. 

My logic was sublime, except for the fact that without added insulin, my blood sugar never goes down during morning workouts — and since I typically wake up at a good blood glucose level, I typically don’t have to take a correction bolus in the morning. In other words, in the morning, I’ve only got basal insulin on board and there isn’t any residual insulin from a meal or correction hanging around in my system waiting to be activated. 

All this is to say that I realized that I might be able to use Symlin to maintain this waking blood glucose level and to prevent my liver from dumping extra sugar into my blood — the trick is to take the Symlin on an empty stomach before the workout and not eat anything (because if I ate anything, I’d have to take insulin, which I don’t want to do on the off-chance that the workout makes me go low). 

With no bolus insulin on board, I’m highly unlikely to drop during the workout. And with Symlin, I am less likely to have a blood sugar spike caused by a liver-produced glucose dump. The possible result? A steady bg during my workout. Can you imagine?!

Now, the astute reader may notice one large flaw in this plan: it means doing hard workouts on an empty stomach. Not ideal. So I’ve come up with another possible solution: eating a hardboiled egg — no carbs, and therefore no need for insulin — before my morning workouts. I have yet to try this egg idea, but my hope would be that it would get at least something in my stomach so that I’m not entirely running on reserve. Granted, since the body mostly uses carbohydrate for short-term exercise needs, the egg may not actually provide much fuel for the workout. It also might mean that I have eggy burps on the rower, which is a disgusting idea. But if it helps my blood glucose, I’m okay with it. (As a comparison, when I don’t take Symlin and eat a 7-gram carb cottage cheese before a morning workout, I have to take 2 units to cover it — and sometimes still go high.) 

And frankly, I feel so shitty during my workouts when my blood glucose is high that fasting doesn’t sound like a bad compromise. This morning, for example, my pump was not properly clipped — and my blood sugar went to 250 at 8am and has still yet to come down, despite multiple correction boluses. I felt and feel horrible, not to mention extremely frustrated. But when I took Symlin during last week’s workout, my bg remained steady, even though we were doing sprints. 

Now, I know Symlin isn’t for everyone – it’s another injection, it can be tough to get insurance approval for (you usually need your doctor to make the request), it can make it harder to recover from lows, and it can make you nauseated the first couple times you take it. (More on Symlin here.) But if you can get over those hurdles, it’s worth a try. I’m going to experiment with fasting/eating a very low-carb snack before morning workouts and taking Symlin, and will report back on the progress. In the meantime, if you’ve got your own tips for managing early morning workouts, post them to the comments!

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