Tag Archives: diabetes

Candid talk on drug pricing.

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.

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Piling Up

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.

Dreamer stage.

I’ve been reading, with great envy, about diabetes conferences on other continents lately. Specifically, the recent Australasian Diabetes Congress in Australia, and the upcoming EASD (European Association for the Study of Diabetes) conference in Europe.

Both of these appeal to me because they feature patient presentations and social media events either as part of the event or coordinated around the event. But there’s also an appeal to me because these gatherings are continental, and it makes me wonder: Why can’t we do something like that here? In North America?

Why can’t there be a North American Diabetes Congress? Why can’t there be a Pan-American Diabetes Summit?

I know what you’re thinking: Too much money! How are you going to get patients there? What do you think you can cover? What about meeting space, exhibit space, agendas, speakers?

Okay, I’m not an event organizer. But I can ask… why can’t this be done? North America, and the Americas including Central America and the Caribbean and even South America, cover a widely diverse group of people. Our challenges to get access to care, drugs, devices, and education are in many ways unique to our hemisphere.

There are also unique voices in each country that we can all learn from. They’re writing, broadcasting, and advocating in ways that I see but don’t completely understand yet. I’d like to see if some of what they do can translate to positive advocacy here too.

Right now, I’m only looking at the positive aspects of something like this. So don’t dump on me about how it’s impossible, companies won’t contribute, if companies do contribute I’m a sellout, people won’t be able to travel far, or the logistics are too difficult.

I’m still in the dreamer stage. I know this could be very good, even if I only have a rough idea of what “this” really is. So don’t harsh my mellow.

I refuse to think that we should be separated by distance or resources. I believe there is a lot we can learn from each other. I want to think bigger than diabetes type or country or age or language.

Why can’t we do it?

Readiness realities.

I can remember when this blog was new, and I would write about anything and everything that inspired me, even a little bit, almost at the very moment that it inspired me. I would often participate in the weekly #DSMA Twitter chats and find something interesting to write about (see: My Week With Celiac).

That hasn’t happened for some time. However, last week’s chat (moderated by Chris Memering) did inspire me to think about, and share, my guidelines on emergency preparedness when it comes to diabetes.

Let’s get a couple of things out of the way here, right at the very beginning: I am not an expert at preparing for emergencies. Also, when I talk about emergencies, I’m not just talking about earthquakes or hurricanes or zombie apocalypses. You’ll want to prepare for those like you always would: plenty of extra food and water, ice, garlic and crosses and whatever else you want to have on hand just in case.

When I talk about emergencies, I’m also talking about the things we don’t always consider: specifically, medical emergencies, either our own or those affecting those close to us. I had an emergency appendectomy last year. A week and a half ago, The Great Spousal Unit took a terrible fall down a flight of stairs. What about those situations?

Some experts might disagree with these ideas of emergency preparedness. But there are two things we do that have been very helpful…

1. That diabetes stuff that I always have to put together when I travel? The extra insulin, the extra infusion sets, CGM sensors, insulin pens and pen needles, etc… I keep that at the ready every single day at home. If I have to get out of the house quickly, I can get it together in less than a minute.

I won’t be set for months with this stuff, but I should be okay for at least a couple of weeks if necessary. When I was in the hospital with a bad appendix (and later, recovering from same), I didn’t have to ask anyone to gather this and that for me. I just said, “Get the box, the insulin cooler next to it, add insulin, and bring it to me”.

2. I have all of my medical information written down. This includes the model of insulin pump I’m using (and the serial number). It includes all of the prescription drugs I take on a daily basis. It includes models of CGM sensors and infusion sets.

It also includes the names and phone numbers of my entire medical team: primary doctor, endocrinologist, etc. Even if they don’t need to be consulted in a crisis, they need to be informed.

I keep this information on my iPad at home, so it’s easily mobile if need be. But I also have it printed out, in case I can’t keep the iPad charged, it gets broken somehow, or no one thinks to try to access the information there.

Hey, I admit that I’m not the best at preparing for an emergency. These two tips may not seem like much. But they give me peace of mind, or at least one less thing to worry about when it comes to managing diabetes, and managing life, through an emergency.

Choices, and the Fear Of Missing Out

It’s funny… I’ve been asked more lately about why I haven’t moved away from my Animas Vibe insulin pump than I’ve been asked why I have remained on this pump.

For the benefit of someone who might be in a similar situation, or just for the few of you who might actually be interested in my opinion, here’s my thinking on the subject today:

First of all, I don’t have to hurry to another pump. My Animas warranty is still good until January 2020. That’s nearly a year and a half. For starters, let’s go with that.

I will admit that I’m not particularly fond of my Animas pump. I don’t hate it either. In all honesty, I’m agnostic when it comes to this device. But it works, and there’s something to be said for reliability. For the record, I use Medtronic MiniMed Quick Set infusion sets, which I’ve used even before starting on Animas. They seem to work best for me.

I have a few choices when considering what to do…

Thanks to Medtronic, which took over customer care from Animas, I can go right now from my current pump to the Medtronic 670g. The appeal of that is obvious, owing to the hybrid closed loop nature of the system. Also, I have friends and acquaintances using the 670g, and all of them either like it or love it.

The biggest issue for me in this case is that the Medtronic CGM still does not lay flat on the skin. If I have to tape it down to keep it on, that’s a deal breaker for me. If they re-engineer the CGM so it will lay flat without taping it down? Medtronic is definitely in consideration.

One of the other intriguing ideas available to me is to create my own DIY closed loop system. I’m already using the Dexcom G5, and I have an old Medtronic pump (my first pump), which might be compatible with one or more of the systems out there.

The idea of doing that really appeals to me. On top of the appeal of a functional artificial pancreas system, there’s also the appeal that on top of my other pumping possibilities, I would always have this option in my back pocket just in case nothing else seems to be as good.

But more than anything else, when I think about why I don’t make a choice at this time, it comes down to one overriding issue: FOMO, or Fear Of Missing Out.

I’ve got nearly a year and a half to go on my current pump’s warranty. My biggest regret in making a change would be if I went to another pump and then, let’s say six months later, something new and wonderful was approved by the FDA that I would love to be using. Only by that time, I would be just six months into a four-year pump commitment that I couldn’t get out of.

I had kind of the reverse happen when Animas decided to close up about two years into my commitment with them. I’m not unhappy with my choice, but I’m unhappy that the company I chose to make the commitment with could no longer uphold their end of the bargain.

Anyway, with all this time left on my warranty, I’ve decided to wait a while and see what happens. I have no idea what’s coming in the next 17 or 18 months. I’m just grateful to have options.

Choice matters for People With Diabetes. Let me ask you:

How would you feel if you were in my position? Would you wait? Or would you make a change?

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