Monthly Archives: September 2018

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

September 27, 2018 – 12:25 pm

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.

By StephenS | Posted in Diabetes | Tagged , , | Comments (1)

Your Government (and the ADA) at Work

September 25, 2018 – 10:11 am

If I may, I’d like to spend the next couple of blog posts talking about recent announcements from U.S. government organizations, that have a significant impact on People With Diabetes. A good impact.

The first announcement is from the American Diabetes Association (not a government organization), which announced that the U.S. Department of Transportation, Federal Motor Carrier Safety Administration (FMCSA), has announced it has changed its rules. For the first time ever, People With Diabetes who inject insulin can be certified to drive commercial vehicles.

For the past 15 years or so, Drivers on Insulin (that should be on a T-shirt) had to get an exemption to be certified to drive tractor trailers, buses, and construction vehicles. Prior to 2003, if you were using insulin to manage your diabetes, you could not be certified to drive under any circumstances.

Today, there are still requirements a driver has to meet, but there is no special exemption to get, and the rules are much more reasonable. I invite you to look at the filing in the Federal Register, especially parts J, K, and L, to see the kind of discussions that took place and the final decisions on what constitutes a qualified driver with diabetes and how the FMCSA took everyone’s concerns into consideration when making a final decision.

Kudos to the American Diabetes Association for helping to push this over the finish line.

You know, I’ve only been writing here for 6 1/2 years, but I don’t think the language used in this filing is something that would have even been considered back then. That’s how fast things are moving in our world of advocacy.

In today’s world, #LanguageMatters, and this is living proof.

Personally, I always had an idea in the back of my mind that once I retired, I would get a part-time job as one of those guys at the airport who drove people from their parking lot to the terminal, and back again. I’ve always loved travel, and this would somehow bring me closer to it.

It’s not necessarily what I’d look forward to in my golden years, but it’s nice to know that now, if I wanted to, I could do it.

By StephenS | Posted in Advocacy | Tagged , , | Comments (2)

8 Things: Fall Recipes

September 20, 2018 – 11:10 am

Autumn begins on Saturday here in North America. That means lots of leaves falling from the trees, Halloween costumes and decorations in nearly every store, and recipes to warm our hearts as the days grow colder.

With that last part in mind, here are 8 Fall recipes I’m looking forward to enjoying in the coming months. Click on the links for the recipes:

1. Cincinnati Chili— it’s the main dish at our Halloween party every year, and a staple in my household, wherever my household has been, for over 50 years. This is one where the vegetarian version is just about as good as the meaty version, its unique blend of spices making your house smell great and making your neighbors’ mouths water.

2. Maple Roasted Acorn Squash— I am most definitely not a squash lover, either in sport or in vegetable form. But this recipe, which I took out of Diabetes Forecast magazine, changed my mind about squash entirely. If you replace the maple syrup with a touch of honey, it’s just as good or better.

3. Potato Leek Soup— here’s a super easy recipe for quick potato leek soup, taken from Jacque Pepin’s Fast Food My Way. A quick lunch or dinner option, it really hits the spot. Bolus appropriately. Note: recipe starts at around the 4:15 mark in the video.

4. Crab Dip— crab is something that I never enjoyed in my life before moving to this part of the world 24 years ago. It’s also something we don’t get a lot of here, because it’s pretty expensive. But once or twice a year, usually around the holidays, I’ll get out my crab dip recipe and give it a go. It’s worth having to bolus for the Italian bread that goes so well with it. Note: I like the second recipe on this page (Crab Dip Delight) best.

5. Flatbread Pizza— okay, flatbread pizza isn’t exclusively a Fall recipe, but it’s a great dinner because a) It’s cheap; b) It’s versatile; and c) It’s delicious with LaRosa’s pizza sauce. My favorite features green onion, mushroom, and bacon, topped with smoked mozzarella. What’s not to like?

6. Roasted Turkey Thighs— confession: I really don’t like turkey that much. But this recipe was a winner from the word Go, and if there’s a dish that says Autumn more than any other, this might be it.

7. Kicked-Up Ramen— Throw that stupid “flavor pouch” away… you don’t need it. Instead, use a little of this and a little of that to satisfy your own individual palate, and you’ll keep coming back to this recipe.

8. Trader Joe’s Pumpkin Ice Cream— okay, this isn’t a recipe, and to be honest, it’s not something I’d enjoy year round. But a couple times during the Fall, I’ll pick up a quart of TJ’s pumpkin ice cream, which really tastes more ginger-and-nutmeg-snappy than anything else. Regardless of what the label says and what it tastes like, it’s still a nice dessert, when I have dessert this time of year.
 
 
Those are 8 culinary dishes I like to enjoy as the leaves fall in Autumn. What are yours?

By StephenS | Posted in Recipes! | Tagged , , | Comments (2)

Candid talk on drug pricing.

September 18, 2018 – 2:31 pm

When you read stories about the high cost of prescription drugs, including insulin, the initial reaction is to wonder how companies can be so heartless when it comes to patients living with chronic conditions who need those drugs.

Though we wonder why, our questions are generally rhetorical in nature. Because we know why. The dichotomy comes down to this: patients want, and often need, to pay as little as possible for drugs that will keep them alive. Companies, on the other hand, will do just about anything to make the next quarterly earnings report look good. When you’re looking at it from either perspective, you can understand each reaction, right?

I can understand it, but I don’t have to agree with it. I say, let’s change the perspective.

I might feel differently if drug makers and pharmacy benefit managers hadn’t already made massive profits at our expense. They were making a profit on my insulin twenty years ago, and they’re making a profit on it today. Same insulin. Billions in revenue.

Twenty years ago, I could afford to get the insulin I needed without much of a hassle. Today, if I lose my job, I might not be able to afford it at all. I’m through with asking, “How did we get here?”.

I say, let’s help companies, especially Pharmacy Benefit Managers, to operate with empathy for the people who have helped pump up those quarterly numbers for a couple of decades. Not because we’ve been such great customers over the years, but because I still believe that people matter more than an executive’s bonus.

I say, let’s put a restriction on how long a company can manipulate drug patent protection for their own benefit. And let’s make it a short restriction. Insulin would still be a profitable enterprise without patent protection, so I don’t see the need for this anymore.

I say, let’s eliminate the idea of drug formulary lists for PBMs. If it’s a drug, approved by the FDA, it should be covered. Period. At the same price as all the other drugs. If we can’t do that, let’s at least ensure that discounts and rebates negotiated by PBMs are passed along to patients enrolled in the plan. Period. Every penny. No exceptions.

You can give me a hundred reasons why none of these ideas would work, and I can’t argue with you on that. But I keep coming back to empathy, and the notion that the way things have always been is not the way things always have to be.

To some, the idea of changing the design of prescription drug coverage and payment seems insane. But in the developed world, that’s only true in the USA. Nearly every other industrialized nation on the planet does a better job of helping patients gain affordable access to drugs.

What’s the holdup, America? It’s time to change the perspective.

By StephenS | Posted in Advocacy | Tagged , , | Comments (2)

Piling Up

September 13, 2018 – 11:05 am

I’ve been getting to work early lately. These days, I’m usually at the office at 7:00 a.m. That involves rising around 4:30 or 4:45, getting showered and changed, getting breakfast, and right now, getting breakfast for The Great Spousal Unit too, before heading out the door around 6:15.

There are two reasons for the early mornings. To begin with, I want to get used to working this kind of shift, so when December gets here and it’s already dark at 5:00, I can be off and still get a little sunlight for an hour or so.

The other reason is because when I get off of work now, I’m usually going home and working on something additional. It may be a podcast episode (or, this week, a podcast glitch), it may be research for my Advisory Council duties, or other outside advocacy initiatives. It may involve blog post writing, or just things that need to be worked on around the house.

These days, I’m finding that things are really piling up, and I’m going at a pace that’s less than fully productive.

Even though it sounds like it, I’m not whining. I realize how fortunate I am to be involved as much as I am, and when I think of how I’ve fared at similar times of busyness in my past, I’m amazed that I’ve been able to keep from imploding completely this time.

But I’m 56 years old. That’s not ancient; as George Jones once said in a country song, “My body’s old but it ain’t impaired”. I’m still able to make an impact. However, I’m feeling like it may be less of an impact in some cases, because not everything is getting my undivided attention when I work on it. Is this how it is for everyone?

I’ve come to this realization due to a number of factors, and those signs mean I need to look down the road and plan some change. I’ve been missing or pushing back self-imposed deadlines for projects. Interviews I want to do are being put off until I have more time.

And I have that song going on in my head. I always have music playing in my head (if it’s not already playing in the room I’m in). Over the years, I’ve come to associate certain songs or certain artists with specific memories. That’s why the 1978 songs Hollywood Nights by Bob Seger, On Broadway by George Benson, and Blue Bayou by Linda Ronstadt, though very different songs, remind me of certain parts of my life back in high school.

Well there’s a song, one I’m not particularly fond of, and when it starts to go off on a never-ending loop in my head, I associate it with chaos in my life. And this week, it started running over and over again.

Perspective: A lot of my chaos is self-imposed. Looking at things reasonably, I think I’m handling life pretty well right now. But… I don’t know if you do this too… often, the more involved I am, the more perfect I expect things to be. And the more disappointed I am when they are not. It makes no sense, but that doesn’t keep me from feeling that way sometimes.

One of the other things that makes no sense is to expect to rid myself of all the chaos all at once. That’s not going to happen. Instead, it will be a gradual process, and once it’s over, I’ll (hopefully) be in a place that feels less busy, but just as satisfying and meaningful.
Here are the things I need to work on right now:

1. Change the tune. Play music… lots of music. Including music I don’t always listen to, like opera or zydeco. I need to push that never-ending loop out of my head.

2. Make a list of things I’m doing that I like, and things I don’t like right now. That may seem difficult. Surely, I wouldn’t be involved in something if I didn’t like it. But if I start listing everything, I’m sure I’ll identify the things that get my immediate attention versus things that don’t.

If I’m procrastinating on something, it goes into the Don’t Like pile. If I address something immediately because I’m worried about the fallout from not addressing it immediately, it will also go into the Don’t Like pile. The Don’t Like pile is the first place I’ll look to pare down what I’m committed to.

3. Fulfill my existing commitments. This may seem counter-intuitive, but if I say I’m going to do something, I need to do the best I can to come through for the people who’ve trusted me enough to accept my promises in the first place.

4. Be mindful about future promises. I still think it’s okay to say Yes to things, but I need to say Yes to things that fill my soul and make me happy, rather than things where I just hope the work will become worth it someday.

5. Breathe, and recognize that my life is not bad. Not, it could be worse, just that it’s not as bad as it sometimes seems to be. In fact, I’ve probably done some of that already, which has probably kept me from imploding. Also, I do have a couple of great things coming up that I’m very excited about. Both of those things indeed fill my soul and make me happy. So there’s that.

If you’ve actually gotten to this point, Thank You for letting me vent. I needed to get this down on paper, so to speak, and I’ll probably come back and refer to it again and again.

My life isn’t perfect right now, but it’s not terrible. I’m starting to understand the definition of the word meaningful. There will be changes coming up, though not right away and not all at once. But it’s all about body and mind. I’ve got to make new space for my mind to operate at full capacity again.

By StephenS | Posted in Out Of the Box | Tagged , | Comments (2)
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