Category Archives: Diabetes

Your Government at Work (Part 2). Let’s build a community!

This is a fairly short post (for me, anyway).

If you didn’t see my post on Facebook about this earlier, I invite you to check it out now. It’s from the Center for Devices and Radiological Health (CDRH) at the U.S. Food and Drug Administration (FDA).

CLICK HERE TO FIND OUT MORE

CDRH is the group that looks at things like insulin pumps, CGMs, and artificial pancreas systems. I think the focus of this initiative is to help foster collaboration when it comes to design and improvement of devices that help us manage our diabetes (and other conditions, but since this is a diabetes blog, that’s where my focus is).

I don’t think that CDRH and FDA are saying that they’re building a community… I thiink they’re saying they’re interested in helping communities build themselves, and listening to those communities when it comes to device development, submission, and approval. How great is that?

The best part is, you can be involved. I wish I had a dollar for every time someone said to me, “I’d like to be in on something like that, but I never get the chance”.

Well, here’s your chance.

Here’s the first paragraph of the notice from CDRH, which says a lot:

One of the Center for Devices and Radiological Health’s (CDRH’s) strategic priorities for 2018-2020 is the creation of collaborative communities to bring together medical device stakeholders to achieve common outcomes, solve shared challenges, and leverage collective opportunities. CDRH believes collaborative communities can contribute to improvements in areas affecting U.S. patients and healthcare. We encourage interested stakeholders to learn more about collaborative communities and review the toolkit, which provides a collection of helpful ideas to foster strong collaborative communities that are well-prepared to take on healthcare challenges.

CLICK HERE – GET INVOLVED

If you read here often, you understand how much I believe in community-based approaches to challenges everywhere. And how much I believe in all of us being involved in said communities.

So let me ask you… why not you?

Enjoy the rest of your week.

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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.

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.

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