Category Archives: Health Care

If You Have to Ask the Price… Canadian Edition

Posted on March 28, 2012 by Jeff Mather

One of the best things about last weekend—and there were so many—was the conversation. Scully let me crash at her cute little house, and we talked. A lot. In fact, I was a bit worried that I was boring her by the end of the weekend. But evidently not, because she kept the conversation going.

What did we talk about? There was the usual stuff you would expect: diabetes and running and bicycling; races we’ve run; people we know in common; Canada and the United States; what we do for a living; and Lisa. We also talked about India, movies, photography, food and our issues about it, English, French, Montréal, relationships, and the Ontario building code. Not to mention a whole bunch of personal stuff that we’ll just keep to ourselves, m’kay?

We spent a long time on Friday night talking about healthcare costs and insurance in the United States and Canada, who pays for what, how much things cost, how easy it is to get access to services, and so on. (I think this is the diabetic version of “How do you say        in your country?” BTW, the answer in Canada is “toque.” Isn’t that precious?)

Basically, it comes down to this: In both the U.S. and Canada, it’s fairly easy to get low-out-of-pocket-cost access to doctors and basic procedures if you have insurance, but prescription medications and diabetes supplies are wicked expensive in both countries. Some drugs cost consumers/patients less in Canada, but pump and CGM supplies have much lower copays (for some of us) in the U.S.

There’s a form of rationing in Canada by limiting how much various plans will pay for, as well as by de facto waiting lists for non-emergent procedures. While in the U.S. we let our employers and insurance companies ration our care by determining how much they’re willing to pay for. In the U.S. and Canada if you have more money, you have better access to helpful things (such as CGMS and all of the test strips you need.) And in both of our countries there are slow-moving regulatory systems that keep us from having access to the most exciting self-management devices and technologies.

I’ve been thinking about all of this in the context of the on-going debate over the U.S. healthcare law, which turned two last Friday, the day that I left for Canada. Happy birthday, Affordable Care Act! Monday, as I flew back, the U.S. Supreme Court was hearing arguments about whether it would survive to its third B-day. [1]

Leaving aside the politics of healthcare in the U.S., one thing is clear: Taking care of our diabetes costs too damn much for what we get. No one in any country should have to make choices about whether and how to manage the basic parts of their disease based on costs. The only way we’re going to fix the healthcare crisis in the U.S. and make it possible for people with chronic illnesses in any country to afford what they need is to lower the overall cost of healthcare so that money is free to go where it’s really needed.

Let’s spend less time thinking about how we pay for things and spend more time trying to make them more affordable.


1 — I’m sympathetic to the argument that it’s Constitutionally strange to compel a citizen to buy something from a private entity. Of course, I also completely buy the argument (a) that a citizen’s failure to have insurance has a significant detrimental impact on my ability to afford my insurance, doctors, and prescriptions and (b) that everyone needs to use the healthcare system, often at times that they don’t expect. Both of these make “buying” healthcare much different than buying a car or anything else “for the common good.” Finally, as much as any other part of the core American value system, I am a firm believer that being a nation that values the rule of law is part of what has helped the U.S. become the more-or-less equal, free, and prosperous society that it is now. If the “individual mandate” portion of the law is ultimately deemed unconstitutional, I wouldn’t be grievously disappointed if the Court overturned it (even though I like it).

Obviously, the answer is more radical—and likely much more legal—than the current system of forcing people to buy private health insurance. Get rid of the ineffective system of private insurance as the primary gatekeeper to healthcare, put everybody into a single-payer system, and pay for it via federal taxes.

Posted in Canada, Diabetes, Health Care, This is who we are | 3 Comments

Beating the Advocacy Drum on the Day after World Diabetes Day

Posted on November 15, 2011 by Jeff Mather

Yesterday was World Diabetes Day, the date that would be the 120th birthday of Frederick Banting, the principal investigator of the project that isolated insulin, preventing diabetes from being a death sentence for those of us who can’t make our own (T1s) or enough of it (T2s). The commemoration is spearheaded by the International Diabetes Federation, the organization with the mission “to advance diabetes care, prevention and a cure worldwide.”

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 . . .]

Posted in Diabetes, Health Care, Hoarding, NaBloPoMo, NaBloPoMo 2011 | 3 Comments

Things You Should Be Reading – August Edition

Posted on September 6, 2011 by Jeff Mather

Hey everybody, I’m about a week late with the August edition of “Things You Should Be Reading.” There’s a little bit of something for everybody here.

Posted in Diabetes, General, Health Care, Software Engineering, Worthy Feeds | Leave a comment

Strike while the Iron is Hot

Posted on March 29, 2011 by Jeff Mather

From the annual report of the diabetes management program of a Boston-area hospital:

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.

Posted in Diabetes, Health Care | 1 Comment

Health Care Law Turns One

Posted on March 23, 2011 by Jeff Mather

Happy first birthday, Patient Protection and Affordable Care Act (né health care reform bill)!

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. . . .

Posted in Diabetes, General, Health Care, This is who we are | 1 Comment

Capping Medical Payments

Posted on February 24, 2011 by Jeff Mather

I’ve been thinking a lot recently about how to keep healthcare costs down. There are a number of options, and the one that Massachusetts is set to implement will create accountable care organizations (ACOs) with “global payments.” In this system, there’s a big pool of money shared by all of the health care providers. It’s a bold act, but it’s necessary, since the Commonwealth’s universal coverage mandate requires that prices come down so that we don’t go completely bankrupt.

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.

Posted in Health Care | Leave a comment

Helpful iOS Apps for Diabetes

Posted on February 23, 2011 by Jeff Mather

I’ve been thinking about iPod/iPhone/iPad apps for good reason lately. My research into how to write such an app of my own continues apace, and I’ve contemplating exactly what I can make it do.

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!

Posted in Computing, Data-betes, Diabetes, Fodder for Techno-weenies, Health Care | 6 Comments

Number Needed to Treat

Posted on February 22, 2011 by Jeff Mather

Here’s a little something to get you in the right frame of mind for some upcoming posts.

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?

Posted in Diabetes, Health Care, Life Lessons | Leave a comment

Personalized Health Data (via CGM)

Posted on February 15, 2011 by Jeff Mather

I’m going to start right off by saying that I love my CGM.

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.

Posted in CGM, Data-betes, Diabetes, Health Care, Life Lessons, Video | 4 Comments

T.R. Reid: The Healing of America

Posted on February 14, 2011 by Jeff Mather

Cover photoThis evening I started reading T.R. Reid’s The Healing of America: A Global Quest for Better, Cheaper, and Fairer Health Care (2010). It’s a more detailed version of the PBS Frontline show he wrote and narrated a couple years ago.

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!


Posted in Book Notes, Health Care, This is who we are, Video | Leave a comment

If You Have to Ask the Price … (part 3)

Posted on February 12, 2011 by Jeff Mather

It’s been a couple months since I last wrote about healthcare costs here and about a year since I took a more in-depth look at the subject. But the subject of health economics is on my mind all the time. If I didn’t have such a totally sweet gig working where I do — we’re hiring, by the way — I would probably try my hand at helping develop healthcare policy. That’s something for another stage of my life, but that doesn’t stop me from wading around in the shallow end.

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.

Posted in CGM, Diabetes, Health Care | Leave a comment

Picking Winners and Losers in the Prescription Drug Wars

Posted on December 15, 2010 by Jeff Mather

This article will soon be is cross-posted on the DSMA weblog. Many thanks for the opportunity!

Note: I know this post is long. Here’s the takeaway in a nutshell: In the American system, we can have lower prices or more choices but probably not both at the same time. If you don’t like that, we have to change the system to work for us. If you read the whole article, I’ll tell you why . . . and how.

During last week’s Diabetes Social Media Advocacy tweet chat one of the topics touched on something that’s been on my mind a lot since about this time last year when the healthcare reform debate started raging in the US: how to balance medication choices, treatment costs, and insurance companies. Here was the question:

Do you think insurance companies are overstepping their boundaries by dictating the cost of drugs versus the best treatment for the patient?

I ended up on the opposite side of the issue from most of my fellow patients, saying that in general I don’t have a problem with insurance companies choosing to favor some medications and therapies over others. I know it’s probably an uphill battle, but let me try to convince you why. If I can’t do that, let me at least try to convince you that the only alternative is something even more radical. (If you’re impatient, you can skip to that part.)

The UHC Decision on Novolog
First, a little backstory. The event that spawned the conversation was a recent decision by United Healthcare (UHC) — a private company that provides health insurance to American patients — to move Humalog insulin into a lower copay price tier at the same time that it moved Novolog into a more expensive tier. The claim made in the chat is that Novolog is now 250% more expensive.

I’ve always been on Humalog ever since I went on the pump, and I’ve never used Novolog. I know there are people with diabetes who swear by it, saying they’ve had better success managing their blood glucose using it. From what I’ve seen, though, their action profiles are very, very similar. The same is not identical, of course; and I have no doubt that some people really do have better outcomes using Novolog than using Humalog. But it’s important to remember that it’s a difference in degree between very similar drugs. It’s not like UHC is trying to switch patients between Novolog and regular insulin or NPH.

In a public document UHC states their reasons for making the changes to the costs of Novolog and Humalog:

Impending higher costs for the FreeStyle and Precision Test Strips as well as the Novolin and NovoLog Insulin products prompted a class review.

None of these medications are in the top 100 based on utilization. When medications are clinically similar to one another, their value is measured in terms of cost.

We were able to negotiate lower net costs for Accu-Chek products as well as the Humalog and Humulin insulin products, making them a better health care value.

Medications in the Select Designated Pharmacy Program will be up-tiered to Tier 3 to encourage Tier 1 use and increase member savings. For more details, see the section below.

And later referring to Eli Lilly’s Humalog products . . .

These medications offer sufficient health care value to be down-tiered. Some have been down-tiered since our last pharmacy benefit communications. The majority of down-tier decisions will be implemented prior to Jan. 1, 2011 so
members can take advantage of the cost savings.

While it says this about Novo Nordisk’s products. . . .

Novolin and NovoLog product rebates were reduced, lowering their overall health care value.

To be sure, these insurance decisions impact UHC’s bottom-line. They appear to have had more success negotiating lower prices with Lilly than with Novo, making Humalog less expensive for them when they pay pharmacies for it after UHC’s patients fill their prescriptions. The more of their customers/patients they can move from Novolog to Humalog the more money they will save. And they plan on doing it through both positive and negative incentives (lower costs for Humalog and higher costs for Novolog).

Who Decides?
Still with me after the backstory? Good. And to the people reading this who don’t live in the United States: Yes, it’s really this complicated and seemingly capricious.

Who makes these decisions about which tier a drug belongs in? It’s certainly not patients deciding. And since we can’t really choose between different insurance providers, we’re stuck paying what they demand. Do doctors decide? Well, yes and no. Doctors create many of the studies and reports that say how well different drugs can be used to treat the same condition. Insurance companies have staff doctors who help them make claims like two drugs being “clinically similar to one another.”

But really it’s the insurers making the decision. They see the price of Novolog going up (for them) and they need to pass that cost along to the consumer pool either by higher premiums or bigger copays. Or both. But certainly not by reducing their profit margins.

While I’m sympathetic to people with diabetes who use Novolog and are insured by UCH, I think we’re in a world of tough choices.

The Tough Choices
I suspect we’d all say that it’s foolish for an insurance company to let a patient stay on a high-priced drug when a much cheaper generic of the same drug is available, without passing on some or all of the price difference to the patient. And I think we’d also say that, when given a choice between two drugs that do the same thing, it’s wasteful of healthcare dollars to pay for the more expensive option.

It gets tricky when there’s a tiny difference between two drugs and a not-so-tiny difference in the price between them. That’s the situation UHC and Novolog users were looking at.

If you had a say in making the decisions, what would you do? Would you pass on the cost of providing the more expensive one at the same copay cost by raising everybody’s premiums? Would you raise the rates of the people who use the most healthcare dollars? Would you stop covering Novo products altogether, since you couldn’t agree on an acceptable price? Would you keep paying for the more expensive drugs and tell your shareholders to expect lower returns, knowing you’d likely lose your job?

The decision that UHC made to move people toward a lower cost drug while passing on the cost to the people who stayed starts to looks less perfidious, money-grubbing or ill-reasoned.

By the way, I was in this situation myself when Blue Cross Blue Shield of Massachusetts decided to raise the cost of Freestyle test strips — again — last year. The lingering objections I had to changing blood glucose meters kinda melted away when I realized that OneTouch meter supplies would cost me half as much out-of-pocket. Those products are almost indistinguishable in terms of quality — unlike some other options. No brainer, right? (I do hope that BCBS doesn’t give me too much run-around now, as I try to get them to reimburse me for continuous glucose monitoring supplies. Their cost is high, but the long-term cost saving should be greater.)

In my opinion, UHC made the right decision, and the only wrong decision would be to let the pharmaceutical companies set the price of therapies without getting any resistance from insurers. For better or worse, insurance companies are the intermediaries between us and the healthcare system. It’s true that this means we often don’t know the real cost of therapies; but I would much rather see someone negotiating a drug price on my behalf and the have the power to pool my interests with hundreds of other people instead of seeing all of the price and having to pay it all.

Alternatives
Suppose I haven’t been able to convince you yet. What are the alternatives?

If you object to letting health insurance companies pick the price tier structure for particular drugs, who would you have do it? The only realistic alternative is to have a panel of doctors pick winners and losers between similar drugs, steering people to particular therapies that work and aways from others that don’t work as well. (Or recognize that there’s no real difference between them. Or that some therapies shouldn’t be covered at all.) If cost comes into it in this situation, it might only be to say, “Between two therapies with the same outcome, always pick the less expensive one.” That might actually help drive drug prices down.

If you object to having tiers altogether, the only realistic alternative is to have higher prices overall for everybody. Maybe you’re okay with that. After all, that’s how systems like Medicare in the US work. Everybody pays taxes so that everyone gets what they need covered. But remember, to keep prices affordable, it’s often necessary to not cover some things at all.

If you object to insurance companies looking at the bottom line when making decisions, then the solution is obvious. Take the profit motivation out entirely. Make all insurance companies be not-for-profits. Convert health insurance companies that make money by denying people what they need into ones that reduce costs by trying to keep people well and looking at the long run.

If you object to the high price of prescription drugs, empower someone with real regulatory power to set the price of drugs. Allow importation of drugs from other developed countries. Demand to know why pharmaceutical companies get away with charging so much more in the United States than elsewhere.

If the status quo doesn’t work for you — and there’s a lot of evidence that it’s not working for most people or for the long-term stability of the country — then change the status quo. The insurance companies are working in the system as it is. We need to change the system so that it works for us and so that it benefits us more than it does them.

Posted in Diabetes, General, Health Care | Leave a comment

Advocating for the Artificial Pancreas

Posted on November 12, 2010 by Jeff Mather

Editor’s note: A few weeks ago, Kim at Texting My Pancreas let me know that she would be writing a skeptical assessment of the Artificial Pancreas Project (APP), after I expressed some similar skepticism. What appears below is me being the devil’s advocate for the artificial pancreas. While I hold most of these views, I’m not in 100% agreement. Because the APP, if successful, may have an enormous impact on the lives of people with diabetes, Kim and I both think it’s important to weigh the pros and cons seriously. This is just the beginning of the debate. Please chime in by leaving a comment with your thoughts here and on Kim’s opposing viewpoint post.

Conflict of interest statement: I work at a company whose software is used to design, simulate, and (possibly) control various parts of the automated pancreas, but I have no personal involvement in the APP . . . although I’m willing to help out in any way I can. (I also contribute money to JDRF, which is funding the APP.) In addition, among the MathWorks’ various technology offerings are products that can be used for controller design; I make no claims about their fitness for use in a clinical setting. These opinions are my own and may not reflect those of my employer.

Kim has given a very accurate description of the Artificial Pancreas Project (APP) and raised some very valid concerns about it. It’s important to be realistic about what the APP is and is not. We agree that, although it has the ability to change the lives of people with diabetes for the better, it is most definitely not a cure; and it does have a significant amount of risk.

But I don’t think the risks should keep us from moving forward with the APP and seeing it as an important therapy until an actual cure is available. I will lay out why I think it’s important to keep moving forward and trying to get as many people on an AP as safely possible. But first, let’s look at Kim’s three main objections:

  1. She doesn’t want to give up control over her personal treatment actions, especially to a system she doesn’t completely trust.
  2. Neither CGM nor pumps are “fool-proof or absent of errors.”
  3. Faster acting insulins leave little room for error and may lead to more rapid overdose if the algorithms miscalculate or the devices malfunction.

Before I get to each of these, let’s look at why we should welcome an artificial pancreas into our lives. The AP can prevent lows and dampen postprandial excursions. It will get us closer to normoglycemia until researchers develop a true cure to type 1 diabetes. As I understand it, the expectation isn’t perfectly tight “control” — I don’t think that’s realistic to expect from anything other than correctly functioning islets. The goal is to smooth out spikes, eliminate lingering highs, and prevent lows.

Essentially an AP will make the “glucoaster” go away and take most of the burden for balancing insulin and food off the shoulders of people with diabetes (PWDs). We have too many variables to consider when making insulin delivery decisions. In fact, we have heuristics (rules of thumb) instead of rules specifically because we’re treating ourselves without all of the information about the hundred different factors that affect blood glucose (BG), and no one can reasonably expect us to make all of the minute-by-minute decisions required by all those things that affect blood glucose.

Most of us just aren’t as good at achieving our BG targets as we want to be, no matter how earnestly we endeavor to hit them. I’m not being judgmental or suggesting that’s a sign of failure. It’s just a testament to the difficulty of this disease. I think the AP will help reduce the emotional toll of diabetes by helping us get more BG and A1c values that we and our healthcare providers hope to see and by removing a lot of the guilt and despair when our decisions don’t work out as we would like.

It’s natural to be skeptical or hesitant before making big changes, especially when they’re related to our health. But we need to accept our own limitations and fallibility and to accept help from technology when it’s available and reliable.

I don’t want anyone to think that I’m sugar-coating or downplaying the very real risks associated with the AP hardware and with more-or-less removing people from the loop. Every treatment option has risks.* Both multiple daily injection (MDI) and conventional pump therapy have risks. It’s possible to draw up the wrong amount of insulin. Pumps can fail, giving too much insulin or too little. BG meters and CGM sensors can give incorrect information or we can miscalculate the number of carbs in a meal, leading us to incorrect dosing. It’s currently too early to say there is any evidence that the AP has a larger risk exposure than MDI or open-loop pumping.

An AP won’t be any more (or less) fallible than a human pumper. If a pump is going to fail, it’s going to fail. I’ve personally had three pumps fail in about ten years of pumping, one of which led to an overdose of about 40 or 50 extra units of insulin during an infusion set change and two of which led to inoperative pumps. Clearly these are unacceptable events. Every AP pump should be built with even more fault-tolerance and redundancy than the current generation of devices. And it’s likely that some automatic decisions may still require confirmation. For example, if the pump exceeds a certain number of units per hour, the wearer may be required to confirm that they ate or provide an estimate of the number of carbs in the meal.

Based on the kind of questions that the FDA regulators were asking at yesterday’s public workshop, I think the level of testing and validation by the FDA is going to be agonizingly thorough. PWDs will eventually grumble about all the delays getting the AP into our hands. And the legal departments of medical device manufacturers are going to be very reticent to give a thumbs up to any device where “normal use” would cause more risk — and therefore bigger lawsuit costs — than the options currently available.

Furthermore, there’s no requirement that the pumps use the fastest acting insulin available. Patients hopefully will be able to choose whether to use it after consultation with their endocrinologists and gathering feedback from those who are using it. And putting glucose or glucagon in the second chamber of the pump should help reduce the possibility of accidental overdose during normal operation.

Finally, there’s the issue of CGM accuracy. This is the trickiest problem, and the one where I most agree with Kim. I think it’s correct to be skeptical of anything that’s currently in clinical trials — anything that uses CGMS, in fact. Having looked at my own data when I wore a CGM sensor for a week, I saw too many deviations from my BG meter and from how my body felt. Clearly this part of the technology is not sufficient for the fully closed loop that defines the APP.

Does this mean that I’m packing it in? Do I doubt the promise of the whole artificial pancreas project? No. It does mean that I wouldn’t volunteer for a closed-loop trial right now.

But I do think it’s wrong to judge the value of the AP, which is at least 2-3 years away from being submitted to the FDA, using today’s options. What is eventually submitted will have to be much more awesome. Fortunately, CGM technology will continue to improve, and the APP offerings will have to include the most-reliable options or it will likely not be approved.

Is the AP perfect? No. Is it riskier than MDI or open-loop pump therapy. Maybe, maybe not — but that’s not a bad assessment for technology that’s still in the prototype and clinical trials stage. The first regulator-approved offerings (hopefully) will be both more robust and much more accurate.

While it’s important to reiterate that the AP is not a cure — and I sincerely hope that companies selling AP devices never try to market it that way — I think it holds enough promise that I’m willing to set aside my fears about mechanical failures and losing control over the minutiae of a disease that I can’t really control on my own.


* — Remember risk is magnitude of a possible problem combined with the likelihood of that problem occurring.

Posted in 101 in 1001, Diabetes, Health Care, MATLAB, NaBloPoMo, NaBloPoMo 2010 | Leave a comment

Artificial Pancreas Workshop

Posted on November 10, 2010 by Jeff Mather

Man, I wish there were times that I didn’t have to work. Don’t get me wrong; I love my job and get a lot of satisfaction from the work that I do and from being with my coworkers. The MathWorks is a great company, and I wouldn’t want to work anywhere else. But sometimes it would be nice if I could just take the day off to attend or follow one of the diabetes events that people discuss on Twitter as it happens: EASD, FDA meetings, Epatcon, ADA scientific sessions, and so on.

Today it was the FDA and NIH’s public workshop on the artificial pancreas project (APP). From the little bits of the live webcast that I heard during lunch, the project is engaged in numerous clinical trials at several locations using multiple different technologies. It would seem that there’s also a lot of room for debate between the doctors, researchers, and FDA regulators about how to interpret the results of the trials and what the standards for safety and efficacy really are.

So many things seem so promising. Some pumps can predict low blood glucose and then suspend background insulin delivery, preventing hypoglycemia from occurring. Other solutions involve a “closed loop” between the insulin pump and the continuous glucose monitor (CGM), constantly adjusting the amount of insulin delivery in response to changing levels of blood sugar. Stopping lows is one thing; preventing highs seems much more difficult.

Everybody said the right things: a solution should prevent lows, minimize the intensity and duration of post-meal blood glucose spikes, be easy to use by people with diabetes, and make our lives better. Of course, for the doctors and regulators, making our lives better means reducing the number of complications and the risk of death from hypoglycemia. Those are important, but I think that most of us with diabetes think that “making our lives better” involves feeling like we have a greater degree of influence over our blood glucose, making our daily choices and actions easier.

But I was surprised by how much disagreement there was between the doctors on the research and regulatory sides. How many hours of in-clinic trials do you need to do before you can start out-patient trials? How much can your rely on software and hardware simulation (“in silica” v. “in vivo”)? If CGMs are reliable enough to use in the project, why aren’t they reliable enough to gather the data needed to validate the research findings? What level of higher blood glucose is acceptable if a pump prevents 90+% of all lows? Can you look at outcomes instead of just A1c numbers?

Those are all great questions, but answering them to the FDA’s satisfaction is going to take a lot of time. It’s good that the FDA purports to take an impartial look at the technology, free from conflicts of interest. But in my mind, they seem like they’re really dragging their feet when it comes to patient-operated technology. It’s hard for me to see so many promising technologies and wonder how long we’re going to have to wait before the products are available on the market. Patricia Beaston, one of the regulators, was very skeptical of integrating medical devices with mobile devices. (It’s enough to make someone like me say things like, “We don’t need your stinking FDA approval.”)

The variability — one might say “inaccuracy” — of CGM sensors and blood glucose meters seems to be the limiting factor in the current technology. The algorithms appear fairly robust, but the data they receive is frequently suspect. As one of the speakers said, the CGM sensors are quite accurate near the calibration points, but not so much as you get farther away. (Those less accurate zones seem likely to be the ones where critical decisions about insulin delivery need to happen.) I wish the FDA would apply the same amount of scrutiny and rigor to existing sensors and monitors that they’re applying to the rest of the artificial pancreas project.

Expect to see some more thoughts on the APP here in the coming days.

Posted in Diabetes, Fodder for Techno-weenies, Health Care, NaBloPoMo, NaBloPoMo 2010 | Leave a comment

Rabbits

Posted on October 11, 2010 by Jeff Mather

Speaking of rabbits and insulin . . .

Rabbit-shaped syringe cover

I’m not sure that this device — which is from an actual U.S. patent filing — would actually make children any more comfortable about getting injections. Or rabbits for that matter. Just saying.

Posted in Diabetes, General, Health Care | 1 Comment