We were busy with our own kind of advocacy round these parts: T-shirts. But I didn’t want to let this important day go under-recognized, so I bring you a post about advocacy in three acts. Three acts.

Act One: Low Glucose Suspend — As you might remember, last Friday I finally met Bernard Farrell after months of near misses. Bernard’s really up on diabetes technology, and we talked a little bit about the Artificial Pancreas Project, which should eventually automate big parts of the T1 diabetes experience. It’s an improvement, not a cure. It’s also years away.

We talked a bit more about the low-glucose suspend (LGS) technology that’s currently for sale in the European Union but isn’t available in the United States because the FDA is worried that it might cause hospitalization for DKA (diabetic ketoacidosis, or very high blood glucose). This misunderstanding of the differences in immediate danger between severe hypoglycemia and DKA seemed ridiculous to us, as it has to every other person with diabetes that I’ve talked to about it.

The Juvenile Diabetes Research Foundation (JDRF) dropped a bombshell a couple weeks ago in an attempt to spur the FDA toward more progressive action on LGS. In full-page ads placed in the New York Times and Washington Post, they cited research that found 1 in 20 people with type-1 diabetes dies from hypoglycemia. LGS could prevent many of those deaths, which is exactly the reason that we need it.

(Victoria Cumbow wrote an excellent article about the JDRF ad and her own experiences with severe hypoglycemia. I recommend reading it when you’re done here.)

The day after meeting Bernard, Lisa and I went to the movies and saw “J. Edgar”. [1] I was heading low before the film started, so I tested with my meter to verify, preemptively treated it, and turned off my CGM’s low alarm so that it wouldn’t start singing to the crowd during the moody period drama. (When I’m hanging out in the low-rent numbers it usually gets very insistent every 20 minutes-or-so.) Sunday morning, I did my long run for the week: 10 miles.

About 4:00AM yesterday (Monday) morning, an hour before the alarm was set to wake us to go to the pool, I awoke feeling not quite right. I tested: 70 mg/dL, which is low. During the daytime I would normally have started to feel symptoms, but at night I rarely do. As I was treating the low, I looked at my CGM, wondering why it hadn’t woken me up. It read in the neighborhood of 70, and that’s when I realized that I had forgotten to turn the low alarm back on. I didn’t hear anything because there was nothing to hear.

The worst part about this event was that the CGM graph for the previous three hours had me in the mid-40s twice for extended periods during that time. I’ve never had severe hypoglycemia (*touch wood*), but Monday night rattled me, especially given the whole 1-in-20 statistic. When I told Lisa about it today—after she mentioned Victoria’s article—she said, “If I wake up and you’re dead from hypoglycemia, I’m going to kill you.”

C’mon FDA, let’s get with it and approve low-glucose suspend!

Act Two: The Ophthalmologist — Yesterday, World Diabetes Day, was also the day to visit my ophthalmologist. Despite the fact that my appointments start chronically late, I like him. He’s a great doctor, and I respect that he treats me as a peer in taking care of my eye health rather than simply as a patient.

But as awesome as he is, his office staff doesn’t get diabetes. I’m sure that they see a bunch of patients with diabetes, as well as a bunch with glaucoma. [2] Surely they believe that trying to preserve vision is their highest duty, and I respect that. Frankly, I’m scared to death of going blind; it’s my biggest fear related to diabetes, and I appreciate that they feel like they need to stress the importance of good diabetes management.

Over the years I’ve tried to gently inform his staff about useful ways of approaching the diabetes issue. “‘What was your last BG reading?’ isn’t really a useful question for people with type-1 diabetes,” I told one tech, who was taking my health history. When she asked what a more useful question would be, I think she really was sincere. I’m not sure that one of the other techs was quite as interested in hearing me tell him that, “Yes, I know my BG values are too high. I don’t like them where they are either. And I understand the possible consequences for my eyes [and feet and heart and kidneys and man parts] from prolonged high BGs. I’m doing my best. It’s really difficult, you know.”

This time, I knew that I had to escalate the issue and take it to their boss.

As the doctor was reviewing the notes the tech took earlier in the visit he got to my A1c. “7.9. That’s lower than last visit,” he said with a hint of satisfaction. Yeah, I’m trying to bring it down, but it’s difficult. “What do you do for exercise?” I train for triathlons about 8-10 hours each week. “Wow. That’s great.” And then he blinded my dilated eyes with three different instruments.

At the end of the visit, I knew what I had to do. “Can I get a few minutes of your time?” He dismissed the person who had been taking notes. “I think you need to talk to your staff about diabetes. I don’t think they know the right questions to ask, and I get a lot of judgement from them. I don’t think they understand how hard it can be to get good blood sugars.” He seemed surprised, and I told him about the previous few interactions and that day’s event. The tech who checked my pressure, put the dilation drops in my eyes, and took my history had gasped when I said my A1c was 7.9 and then groaned when I countered that it was down 0.5 from last time and was the lowest that it had been in a year.

“How would you suggest that we handle diabetes in the health history?” he asked with complete earnestness. I suggested just asking what the last A1c was—or 14-day average or typical range of meter values for people who haven’t had an A1c recently—marking it down in the notes without comment, and moving on. I told him not to single any of his staff out.

“I’m sorry that you had those experiences. And thank you very much for telling me about how my staff can improve. We have an all-staff meeting in a couple weeks. I’ll let them know. Thanks again.”

Can I tell you again how much I really like my ophthalmologist?

Act Three: Diagnosed on World Diabetes Day — I learned this morning that a friend’s seven year-old nephew was diagnosed with type-1 diabetes yesterday on World Diabetes Day. I wouldn’t wish this way of learning about diabetes upon anyone, regardless of their age, but I’m glad that my friend was able to reach out and let me know about it so that I can help in whatever way possible.

While I offered myself to her step-sister as a resource for any kind of question, the truth is, I really don’t follow the “children with diabetes” (CWD) part of the diabetes online community very much. While I understand living with diabetes, I don’t know what it’s like to take care of someone with diabetes, especially a child. It’s just different.

But I do know people who were children with diabetes, and I know some people who have T1 kids. Some of them might even be reading this post. My hope is that you can help fill in the gaps in my knowledge of this neighborhood of the DOC. The next post here will be a special place for you just to share links to blogs and Twitter accounts of parents of CWDs along with any other website that has reputable information or is a really good on-ramp to the DOC for newbies.

Thanks for advocating and for helping me advocate! Together we make a difference for those of us with this shitty disease.

There you have it folks: three short tales related to advocacy all taking place around World Diabetes Day. But as Scully said, “World Diabetes Day is over. I still have diabetes. Dangit!” Yesterday we got some people’s attention; now the hard work starts.

We need a vaccine and a cure for every type of diabetes. We need to keep pressuring our governments for more funding into disease R&D. And we need a regulatory scheme that brings to market new technologies which help us manage the dozens of daily diabetes decisions more effectively.

And we need to make sure that basic treatment is available to everyone all over the world. As awful as it is that I can’t get a device with low-glucose suspend in the US, it’s worse for people who don’t have adequate access to insulin at all, even 90 years after its first therapeutic use. So go watch the The Life For A Child film and help stop diabetes worldwide. That’s the real message of World Diabetes Day.

1 — A.k.a., “Brokeback Bureau.” [Back . . .]

2 — Glaucoma, which I’ve had since I was a teenager, is my first chronic illness. Even though I’m up to three now after finding out that I have vitamin B12-deficient anemia a couple years ago, you needn’t worry that I’m trying to collect or hoard them. [Back . . .]

• Brilliantly smart-ass responses to completely well-meaning signs (via John Nack)
• It’s been a very long two weeks. Get prepared. — A hilarious gem from the Bloggess that includes (what’s this?) Nathan Fillion and twine.
• What Fuels the Athlete With Type 1 Diabetes? — A really great article from medical journalist Miriam Tucker. Buy me a Diet Coke and I’ll tell you my own story.
• New Zealand — Kris Freeman is still taking names and kicking ass.
• An Absence of Advocacy — Chris thinks he’s not a good diabetes advocate. Sometimes being present is enough, man. Oh, and having a kick-ass podcast certainly bolsters one’s D cred.
• Fuck Yeah Diabetic Cat — . . . I mean even this is advocacy, Chris.
• Observing demos hurts learning, and confusion is a sign of understanding — Let this article blow your mind. (via Software Carpentry)
• JAMA: The Hazards of Evidence Based Medicine — As with everything it’s about what and how you measure.
• Want To Keep (And Motivate) Your Best Employees? It’s Not About The Money — Relationship-driven leadership.
• Radiology Wife: How To Read A Chest Radiograph — This is pretty much the approach I take when looking at DICOM files our customers send us.
• Nine Deadly Sins of Project Planning — The worst? “Not Learning from Past Planning Sins”
• Scientific photography: Escher in water, eggs exploding, & more — Oooh! Shiny!

Observationally, patients who had 3 visits each [with a diabetes educator or nutritionist] had greater decrease in HbA1c.* Those individuals with 1 visit only, [had an A1c that] remained the same or higher and often had no follow up from [their primary care physician] either. The demographics on those lost to follow up appeared to have barriers such as ESL, co-morbid conditions reflecting many [hospital] visits, psychological issues, and transportation issues. This is an area of opportunity to provide as much education and management as possible on this initial visit and offer outreach telephonically to help this population.

* — HbA1c is diabetes self-management metric. Lower is (generally) better.

You’re not perfect and are kinda responsible for getting your birth parents kicked out of the house. I don’t blame you per se; the Democrats were occasionally timid, frequently disorganized, and fundamentally incapable of articulating a message that could be heard loud and clear above the din of the opposition’s bullshit. Be that as it may, you’re here and making my life better.

I no longer have trouble falling asleep or break into a momentary panic — like I occasionally used to do — at the thought that my good health is tied to having the particular job I have now. While it’s true that, unlike your cousins in most other highly developed countries, you don’t do much to reduce the cost that I would have to pay if I lost my job, at least I can count on you (eventually) to prevent me from losing my access to that expensive health care.

What you need now is a sibling. A little law that will help lower the cost of medical care. A bossy, nosy, thrifty, little brother or sister. An enfant terrible, if you will. Don’t worry, no matter how successful she or he is, you’ll always be the one we love more. You’ll be the prodigal son.

If only I could make laws the way my cousins make babies. . . .

Today’s WBUR CommonHealth blog contains this fascinating nugget in an interview with Dr. Marc Bard about ACOs and global payments.

Now, what is being proposed in Massachusetts creates somewhat of a zero-sum game, doctor against doctor and doctors against hospitals; and that’s a less comfortable battle. And, it’s potentially going to be even less comfortable because with the ACO, there’s going to have to be more support for primary care, and if you’re operating with a fixed global payment budget, that means that the high-end providers, the high-end physicians and hospitals, are going to take the greatest haircut. That’s reality.

And by the way, I’m a strong advocate of capitation. Of all the payment strategies that have been used over the past decades, the one that truly fostered innovation was capitation, because it required the invention of new ways to deliver care on a fixed budget. So I like responsible capitation, it’s just that I’m realistic enough to appreciate that introducing it in Massachusetts is going to be very difficult.

Think of a bell-shaped curve. There are people at one end who absolutely need the high-end procedure and no one would dispute that. At the other end, I don’t need a total hip replacement. But there are a lot of people in the middle of the bell-shaped curve. The real question is: Do they need the procedure and do they need it now? And those kinds of borderline cases are going to come under much greater scrutiny. Who really needs a stent? Who really needs a bypass? What’s the data to support bypass vs. stent? The best example is Prostate Specific Antigen testing for men. There are going to be long-term studies that ask the question, who really needs surgery or radiation and if so, when?

That last paragraph scratches the surface of the shades of gray that are at the heart of the choices we might have to make if we can’t bring costs down any other way.

I’ve also been thinking thinking about the apps I have now that I find useful for diabetes. To be perfectly honest, none of them are the typical journaling apps. I downloaded a few, used a couple, but stuck with none. Journaling just takes too much time and/or sustained attention. You either stick with it and get a lot of use out of it, or you have a life. I’m trying not to make that same mistake with my own app. Let the machines collect the data, I say. We’ll use our brains to make decisions based on their hard work. Thinking, that’s our proper role.

Anyway, what apps do I have on my iPod Touch (a.k.a., cheapo iPhone) that help me with my diabetes?

• Tap & Track: Calorie Tracker ($3.99) — It has a ridiculous amount of foods in its onboard database, including loads of restaurants and name-brand packaged foods. No network connection required. Easily access things you eat regularly. Get details about your own recipes. A bargain at twice the price.
• Twitter (Free) — Gotta keep in touch with my diabetes online community.
• Things ($9.99) — This GTD app is a bit pricey, but it’s the best I’ve found. Among other things, I use it to keep track of my diabetes and health-related projects and tasks. I can set it to remind me to get my A1c drawn months in the future, when it’s actually relevant. It reminded me to “write that weblog entry about iPod apps” before DSMA. Oh, and since I made a recurring task to take my vitamins, I’ve gotten much better at doing that. I like checking things off a To-Do list. :^)
• Due ($2.99) — I try to bolus for breakie 15 minutes before I eat. This little reminder app has reminded me more than once that it’s finally time to stop working and go eat that cereal.
• Reeder ($2.99) — This RSS aggregator hooks up to Google Reader and helps me keep up to date with all y’all’s weblogs. (Thanks to Pearlsa for recommending this.)
• iBooks (Free) — I keep my running plan that I built on a running web site in a PDF here, along with a few exercisey things that I scanned from magazines. (What I really want is a tear-sheet app, but until then . . .)

So what am I missing? What do you use? Please leave a comment!

From Wikipedia, number needed to treat:

The number needed to treat (NNT) is an epidemiological measure used in assessing the effectiveness of a health-care intervention, typically a treatment with medication. The NNT is the number of patients who need to be treated to prevent one additional bad outcome (i.e. the number of patients that need to be treated for one to benefit compared with a control in a clinical trial). . . . The ideal NNT is 1, where everyone improves with treatment and no one improves with control. The higher the NNT, the less effective is the treatment.

This goes hand-in-hand with its fraternal twin, number needed to harm:

The number needed to harm (NNH) is an epidemiological measure that indicates how many patients need to be exposed to a risk-factor over a specific period to cause harm in one patient that would not otherwise have been harmed. . . . Intuitively, the lower the number needed to harm, the worse the risk-factor.

Basically these are the number of people you would have to treat if you were to fix the medical problem or make it worse. If you have your own data set, you can easily calculate NNT and NNH. (Compute them with software, of course! What are we savages?)

How about a diabetes-oriented example, care of the Centre for Evidence-Based Medicine?

“The results of the Diabetes Control and Complications Trial (DCCT) into the effect of intensive diabetes therapy on the development and progression of neuropathy indicated that” the NNT was 15. “We would need to treat 15 diabetic patients with intensive therapy to prevent one from developing neuropathy.”

Compare that to another study that looked at the role of “regular telephone contact with a diabetes nurse educator for advice about adjustment of insulin therapy vs. regular clinic visits and usual contact with the endocrinologist for insulin adjustment.” In this study a positive outcome was defined by examining the “mean HbAlc level and proportion of patients who achieved a reduction in HbAlc level ≥ 10%.” It found that the NNT was 2. Two! For every two patients who get called by a nurse educator, one of them will likely see an improvement in self-management abilities.

These studies aren’t mutually exclusive. In fact, you might say that having nurses call patients is an effective part of “intensive therapy” that contributes to lower incidence of neuropathy.

The main point I want you to take away from this small digression is that whenever you hear medical reporting about the value of new or existing therapies, you should think in terms of NNT and NNH. If we gave everyone this test (or drug or medical intervention) how many would benefit? How many would suffer as a result? If the cost of the treatment is large but it only saves one life in 1,000, is it worth the cost? How many of those 1,000 are harmed? Are there other therapies with better NNT and NNH numbers that could be used instead?

Once I made a few calibratrion-related changes and after I decided that it was never going to give me very good information during the first half-hour (or more) of exercise, I’ve started to feel more comfortable with its accuracy.

But that’s small potatoes.

Much more important is that I’ve started to look beyond the actual numbers, as recommended in Beyond Fingersticks, to see meaning in the swoops, peaks, dips, plateaus, and flat lines in my CGM data plots. A rise with a plateau? Probably not enough bolus insulin. A slow, steady climb or fall? Probably an incorrect basal rate or the hangover from exercise (also a basal rate issue). A big spike that comes right back down — after a couple hours, that is? Maybe I should bolus earlier for food or add something to the meal to slow down the hit.

This knowledge is especially empowering. For the first time in a long while I have hope that I can improve how I manually do what my pancreas should be doing. I’m starting to draw better inferences about the relationship between the actions I take and the effects they have on my blood glucose. And because the CGM has low and high alarms that act as a safety net and early warning system, I feel more confident in giving some of the larger insulin boluses that I’ve been too chickenshit in the past to take. Back in the pre-CGM days, I didn’t have the level of trust in those recommendations that I really needed in order to “do the right thing.” Now . . . well, I’m getting there.

All this was already on my mind before I saw the TedMed talk by Wired‘s Thomas Goetz. It’s a must see for people trying to improve their own health behaviors or those in their patients. (It even singles out a very bad ad campaign by the American Diabetes Association. sigh)

Goetz’s argument that we need personalized data to improve health outcomes has three main parts. (1) When it comes to behavior modification, fear is less important to patients/people than a sense of our own efficacy. (2) There’s a powerful and positive feedback loop when we have an emotional connection to data that’s by and about us. And (3) most medical data isn’t presented in a way that helps us create those strong emotional bonds.

The feedback cycle starts with personalized data, which leads to a sense of personal relevance that informs which health options are best and helps us take action. When done right we should be able to see the results of those actions in a new batch of personalized medical information. For those times when we do create new health data, we should be asking ourselves these questions:

• Can I have my results?
• What does this mean?
• What are my options?
• What’s next? How do I integrate this information into the rest of my life?

This is the amazing power of CGM that I’m beginning to harness: I see the results of my eating, dosing, and exercise decisions in a tight loop. I’m still learning how to understand how these three factors (and others) appear visually on my little CGM screen, but the fact that I can see them in anything approaching realtime is just so powerful.

Goetz concludes by noting that “compliance is not the same as engagement,” which is having the opportunity to act as one’s own agent.

I feel like I have a whole new model for engagement with my diabetes.

Reid’s journey around the world in search of ideas that the United States can borrow in order to make substantive improvements in healthcare is shaping up to be a good read, and I will post some ideas from it. I’ll get the ball rolling by noting the four axes he’s using to gauge other countries’ health systems:

• Coverage — How many people does the system cover? Who makes access-to-treatment decisions? Everyone else’s systems seem fairer than the US model.
• Quality — How can the United State match health outcomes of other countries? People in most other rich nations have better health than we do.
• Cost — How much do those other systems cost? How do other nations spend less per capita than the US?
• Choice — What are the options and trade-offs for seeing the doctors you want at the hospital you want in a timely manner?

I may ask you, my dear readers, about some of these issues. Stay tuned!

I’ve been reading more about the healthcare cost landscape and different ways of trying to reduce (or even constrain the growth of) what the United States spends on medical treatment. Now that the GOP is trying to “repeal and replace” the healthcare reform law, there’s a chance to evaluate a different approach than “Obamacare.”* I am quite interested in seeing what serious conservative ideas for defining and managing the American healthcare system might look like. As always, I’ll apply my rubric for evaluating options:

1. How will it improve patient health outcomes?
2. How will it contain or reduce the cost of healthcare?
3. How will it increase access to healthcare for all Americans?

For now, I’ll just throw a little anecdote out there that I plan to use as a touchstone for further discussion of healthcare choices and costs. It happened last month when I was getting trained on how to use my CGM.

Near the end of the training, after watching me insert a sensor and working through some fill-in-the-blank worksheets about calibration, the Medtronic rep made an unexpected diversion into the cost of all these supplies.

“The little transmitter you have here, it costs about $1000. And each disposable sensor costs $45. I know your insurance paid most of the cost of these things, but I just wanted you to know how expensive they are. A lot of people on insurance don’t know the actual cost at all.”

If I were to use the CGM sensors as they’re currently approved by the FDA, I would change sensors ten times per month, for a cost of $450 to my insurer. I’ll confess to wearing each sensors for a week — everyone uses these things for an extended duration — but that’s still about $180/month of new charges by yours truly.

Believe it or not, despite having really good insurance, I held off getting CGM for quite a while because I wanted to make sure that my additional demands on the healthcare system were actually going to be worthwhile. Don’t get me wrong, my main reason for buying into CGM is to have better blood glucose control so that I can have more freedom and options in my life. But the thinking is that having better self-management abilities should translate to fewer complications, fewer emergency calls for severe hypo and DKA events, and lower medical spending in the long run. But there are no guarantees; I’ve been blessed with good health despite my higher than optimal A1c values. (*touch wood*) CGM might turn out to be the amazing thing everyone says it is, or it could be another high cost aspect of an already expensive disease.

We’ll explore aspects of these arguments more in the coming weeks.

* — I have to confess that when politicians, pundits and Twitter peeps use the word “Obamacare,” I basically stop listening. If people poison the well, I’m not going to drink from it. We’re all adults here; let’s discuss the options and alternatives without resorting to prejudicial code phrases. I’ll try to be open-minded, too.