Category Archives: Diabetes

In..cre…ment…al…Change

So, you might have seen this news from Eli Lilly and Company this week…

Lilly Diabetes Solution Center Now Open to Help People with Insulin Affordability

If you haven’t read it yet, here’s the short version: Lilly Diabetes has set up a dedicated unit with the purpose of helping people who are having trouble covering their insulin costs.

This is just my viewpoint, and you are free to disagree if you like. I’ve considered this announcement with the old Pros and Cons exercise. First the Cons, then the Pros.
 
 
Cons

– When I think of the term “Diabetes Solution Center”, I think of a mythical place where I’d go to be cured of this condition. That would make insulin a hell of a lot less expensive.

– Insulin is too expensive, price increases have been far too frequent, and we can measure Lilly’s revenue from insulin in billions of dollars. Per year. Why not just lower the price?

– You can only access the Diabetes Solution Center by phone. And it’s not a toll free call. In addition, the Diabetes Solution Center is only open from 9:00 a.m. to 8:00 p.m. Eastern time (US) Monday through Friday. That’s 6:00 a.m. to 5:00 p.m. on the west coast, and 3:00 a.m. to 2:00 p.m. in Honolulu.

– Most people, especially vulnerable populations, only find out about price increases when they go to fill their prescriptions. Many pharmacists, because of contracts they sign with Pharmacy Benefit Managers, aren’t allowed to inform patients of the Diabetes Solution Center. That’s what’s known in business circles as a “gap”.
 
 
Pros

– The day before this announcement, Eli Lilly & Co. didn’t have this option available to patients who struggle to afford the insulin they need to live.

– Lilly is spending money on technology and manpower to staff the Diabetes Solution Center.

– I think, and this is just my interpretation, that Lilly Diabetes is finally coming to grips with the fact that insulin affordability and insulin access are major issues. You can opine on how much they have to do with insulin affordability in America, but again… no one is holding a gun to their heads to force them to do this.

– If one person, or two people, or a hundred people are helped so they feel less burden, pay less for insulin, get more assistance in meeting their deductible, the Diabetes Solution Center will be a godsend for those who are impacted.
 
 
As much as it pains me to admit it, we were never going to go from non-affordable insulin to affordable insulin overnight. This move by Eli Lilly & Co. stops far short of what almost all of us want. But at least it’s a move in the right direction. Incremental change is still change.

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Language I can appreciate.

In a moment of complete boredom last week, I actually Googled the word “diabetes”. You know, just to see what would come up.

Fortunately, the top search results were primarily from diabetes organizations here in the USA, and from various diagnosis/doctor websites. In all those cases, the groups devoted a page, or part of a page, to describe what diabetes is.

So, because I like a little adventure now and then, I decided to check out all those descriptions. Well, not all, really. In fact, I looked at about ten of them. I didn’t want to be too adventurous, after all.

Far and away, I thought the best description belonged to the National Institute of Diabetes and Digestive and Kidney Diseases, or NIDDK, because I can never remember National Institute of Diabetes and Digestive and Kidney Diseases.

NIDDK is a division of the National Institutes of Health here in the United States, and they do a tremendous amount of work in this area. They are among the most important of government workers dedicated to diabetes research.

I liked their description because, first of all, they described diabetes in succinct, easy to understand terms. I also liked this little bit they threw in too:

“Sometimes people call diabetes “a touch of sugar” or “borderline diabetes.” These terms suggest that someone doesn’t really have diabetes or has a less serious case, but every case of diabetes is serious.”

The description goes on to mention the most common types of diabetes, Type 1 and Type 2, and also has links to other forms of diabetes like monogenic diabetes (like MODY) and cystic fibrosis-related diabetes. Most descriptions online leave these out completely.

The page also lists the latest statistics on the prevalence of diabetes in my country, and links to what I think are important things to remember if you live with diabetes.

For now and future reference, you can find the full description HERE.

It seems we spend a lot of time these days noting when people get the facts wrong about diabetes. Just as important, I think, is noticing when we see the facts clearly presented as they are, in language that nearly everyone can understand. Trust me… it’s worth the bookmark.

Diabetes and the Gig Economy.

The Gig Economy… currently, one of my favorite buzzwords (not), along with Blockchain (not).

According to a McKinsey & Company report from almost two years ago (and that’s a lifetime these days), 20 to 30 percent of working age adults in the United States and Europe spend all or part of their work week as part of the Gig Economy. That’s over 160 million people.

The report also notes that technology improvements are primarily responsible for driving innovation and creating new jobs for people like Uber drivers, Etsy entrepreneurs, and YouTube channel stars, among others. Yet it also notes that only 15 percent of “independent workers”, as they call them, are actively engaged on digital platforms as a part of earning their income. I find that 15 percent number to be suspect, and for what it’s worth, I’m thinking it must be much higher than that.

Anyway, this is a diabetes blog, and you’re probably wondering what the heck this has to do with diabetes. Does the Gig Economy have anything to do with diabetes at all? The answer, as in so many things, is Yes and No.

Look, there are many people working independently to improve the lives of people living with diabetes. There are people working independently to create and maintain their own closed loop AP system. There are those working on better products, better apps for us to help track our diabetes. I even know people who did crowdsourcing to help fund their book launch. Heck, I’m blogging independently, and that certainly seems like work sometimes.

The thing is though, almost everyone involved in diabetes-specific independent work is doing it for absolutely no money at all. We’re performing the Gig without the Economy. I don’t mind that so much myself, but it’s also why it’s been quite a while since I agreed to write for a company-sponsored website. If I’m going to work for free (like I do here), I’m going to do what I like, when I like doing it.

Those DIY #OpenAPS experts? They’re not taking the time to set up and maintain their systems so they can make some extra money. They’re doing it for quality of life, for themselves, and their families. And frankly, some are helping others do the same thing without ever seeing an extra dime.

Because diabetes, despite all the technological advances of the past 15 years, still relies on the individual for success. We can’t farm the work out to someone else to do in the evening or on weekends, or when we’re sick or we’re on vacation. We can’t hire anyone to insert a CGM sensor or count carbs or inject insulin. Oh, if only we could. We could make a fortune moonlighting, while others could unplug for a much-needed rest.

To the extent we’re involved in the Gig Economy at all, for most of us, it’s so we can earn a little extra in order to afford supplies, drugs, or a trip to a conference that allows us to learn and grow and spend time with others like ourselves.

You see, we already have a gig. It’s called staying alive. Our economy revolves around getting enough money put together to be able to afford to stay alive. We’re good at our gig because we have to be. We work hard at it so we can maintain a life, not build a lifestyle.

The curse I dare not speak.

Don’t worry… I have nothing weird to share today. I’m just going to riff for a bit about something that’s been on my mind, but I don’t like sharing.

As the months and the years go by, I’m worried that insulin resistance is becoming a larger part of my life.

I’ve alluded to this before, but the basics are this: I eat less today, including less carbs, than I’ve ever eaten as an adult. Yet my insulin needs are higher than ever before.

I’ll bet almost every Person With Diabetes feels like they take too much insulin to stay alive. I certainly do. How can you not?

Well, for about six months now, my insulin needs have increased by about 20 percent, on an nearly daily basis.

When I say I’m requiring more insulin, I mean I’m adding more insulin in terms of meal boluses and correction boluses to continue to keep my glucose in a safe range. It’s just… a lot of extra insulin, nearly every day.

My A1c is still very good. But to keep my A1c where it is, I need the extra insulin, and that bothers me more than I can tell you.

It bothers me because extra insulin gives me the feeling that I’m not taking care of my diabetes well enough. If I really think about it, I am taking care of my diabetes. However, when you come to the realization that this is really happening, you start to ask why, and at that point, it’s a short walk to blaming yourself.

I’m also bothered because extra insulin indicates the possibility of extra weight gain. Hell, let’s be honest… at my age, with my ever-slowing metabolism and the fact that I can’t work out as hard as I used to, extra insulin almost certainly means weight gain. Dammit.

So, what do I do? I have to face this like I face everything else.

First, I’ve got to realize that I’m lucky: I have access to insulin and a good insurance plan through work that makes getting insulin expensive, but still possible. Next, I have to rule out any outside reasons why I might need more insulin right now.

Once I do that, I’ve got to do the best I can, so I can mitigate the effects of the extra insulin I’m using. To the extent I can anyway…

There are a lot of things we’ve got to deal with, a lot of things we have to swallow as we go through our lives with diabetes. None of them are things we look at and say, well, that’s not too bad. They all suck.

But to the extent we can make them suck as little as possible, even if they suck a lot, we can still claim the power over how these things make us feel. Especially when we feel powerless to stop them.

A Day in the Life.

Earlier in the week, I sat down for an interview with a person doing research on patient perspectives regarding continuous glucose monitors, or CGMs. It wasn’t as dull as that might sound; in fact, it was a great conversation and the time flew by.

Among the questions I was asked were things like “How much do you think about diabetes throughout the day”, and “Describe a typical day managing your diabetes”. I believe many of us bloggers did a “day of diabetes” or some sort a few years ago, and to be honest, I haven’t really written anything like it since.

But, since I was asked, now I’m thinking about it a lot. Here’s how yesterday went for me and my diabetes:

Wake up.
My alarm went off like it does most every morning at 4:30 a.m. Yeah, I hit the snooze and turned over for another 15 minutes, but before I did, I checked my phone to see what Dexcom had to say about my morning glucose level.

I’ve been experiencing some wicked dawn phenomenon lately, sometimes waking up between 60 mg/dL and 80 mg/dL, and 45 minutes later being between 180 mg/dL and 200 mg/dL. Before breakfast. So I checked my phone to make sure I wasn’t already at 150 or above.

I got up, I showered, got dressed, the usual. I went downstairs and fed Max the Cat, took my daily medications and vitamins, and made a cup of coffee. I checked my BG using my glucose monitor to calibrate my CGM, which I have to do every 12 hours. And I pre-bolused for breakfast. There were about 35 grams of carbs in it.

Go to work.
You might think, hey, get in the car and go to work? That’s no big deal! But I only drive about a mile before getting on a commuter train for 20 minutes or so. Then I have a half mile walk to the office.

That means making sure my BG is high enough to sustain me while I make that commute. It also means I need to have fast-acting glucose (in my case, candy) in my pocket just in case I dip low somewhere along the way.

Blood Donation.
It just happened that yesterday was our semi-annual blood drive at work, so I sat down and opened up a vein to do a double red cell donation. I’ve already written about what that’s like. Some People With Diabetes in the USA are eligible to donate blood. I am happy and honored to be one of those people.

Diabetes didn’t really play into this donation, except that I kept checking my phone in the hour before my donation to make sure I wouldn’t have to worry about a low during the bloodletting process.

Work. Advocate.
If I’m not working from home, I sit at a desk all day in the office. I have to make sure I have juice and candy in my desk. I also need to have access to water, and have a chance to get up and walk if my BG gets too high during the day.

Yesterday, I also fired off an e-mail to a colleague in charge of real estate and workplace design for the company. They’re involved in a project right now to transform the way our teams work, and the space we work in. My e-mail mentioned my needs as a Person With Diabetes, and also a reminder that I’m probably not the only one at my company living with a chronic condition that might need attention or special accommodation.

Head home.
About 4:15 p.m., I headed home. Another half mile walk, to the train station, a ride back to the neighborhood, and a quick ride the rest of the way home.

Except my blood sugar dropped dramatically by the time I reached the station. I went through the candy in my pocket, and I was still low. The train was packed, and I stood all the way. I was unsteady, but I’ve done it before, and in that moment, I really didn’t have a choice in the matter. I made it home okay.

Later.
I had a little leftover chicken and pasta salad for dinner. I made a quick run for necessities at the grocery store. I sat down to write most of this blog post.

And I participated in the wonderful #DSMA Twitter chat that happens every Wednesday night at 9:00 p.m. Eastern time in the USA.

For all of the extra tasks, the worry, the highs, the lows that I experience in a given day or a given week, the #DSMA chats are just what I need, reminding me that I have support out there, and no matter how hard my day might have been, there are others who have to work just as hard or harder to live their lives with diabetes.

I would add sleep here as a final entry, but c’mon, you took that as a given, right? Yeah, I deal with diabetes a lot every day. When you live with a condition that’s with you 24 hours a day, seven days a week, you tend to think about it almost that much.

That’s why reducing burden is such a big deal with us. If you can’t give us a cure, give us less work and less worry. That’s my day of diabetes. Just one day. Tomorrow, it all starts over again. The next day, the same. Forever.

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