Take action Now (it’s soooo easy)

Courtesy of Diabetes Patient Advocacy Coalition, I wanted you to know about a proposed change to Medicare Part D coverage (that’s drug coverage) that could be a big win for older people in America. And you can help add your voice to the growing chorus in support of this change!

Today, there are a lot of middlemen in the insulin pricing process. Those middlemen spend a lot of time negotiating discounts from drugmakers for insulin, and then putting those discounted savings right into their own pockets.

Under this system, the middlemen negotiate the $300.00 retail price of a vial of insulin down to about $85.00. Then they keep the difference for themselves. Medicare recipients don’t see that discount at the pharmacy!

But… under a proposed rule, those middlemen would have to pass the discount on to Medicare recipients, significantly lowering their cost of staying alive. Who couldn’t be for a change like that?

So here’s what I’m asking you to do: Go to the DPAC website, check out the slick informational graphic at the top of the page, and then add your name to the DPAC Rebate Reform Petition in support of this proposal.

I promise you it will only take a minute. And you’ll be one of many who have added their name to the list in support of something that will help to make diabetes patients, and everyone living with a chronic condition, a lot more likely to be able to afford the drugs they need to live their best in their senior years.

CLICK HERE to add your name to DPAC’s Rebate Reform Petition

Your one minute of advocacy can change lives. As someone with parents on Medicare, and as someone who will be eligible for Medicare in about eight years… Thank You.

8 Things, All About the 50s

I have a birthday coming up in about a week and a half, and it hit me recently that I am now firmly on the back side of my 50s.

Just reaching a new birthday isn’t a remarkable achievement. If you’re younger than I am, there are no special words I can offer to lessen any fears of reaching this point in life.

That said, I do have something to contribute. There are some good things about being who I am today. While I think about those, here are 8 things that my 50s have taught me so far:

1. Physically, I’ve slowed down. Let’s get the bad news out of the way first. I probably can’t run a sub-30 minute 5k any longer. The good news is that my stamina is still what it was. Given the opportunity, I’d love to get on my bike and ride all day again. While I might cover less distance in a day from what I did ten years ago, I can still ride all day, and I can live with that.

2. I’m starting to understand the phrase “eat to live”. I like to eat, and I love to cook, but I definitely don’t eat a lot anymore. Not even when I’m hungry. At this point, as long as the food is good, I’m happy to eat only when I’m hungry, and then only until I’m not hungry anymore.

3. What I’m afraid of has changed. In my late 40s, it was all about dealing with one of the worst bosses I’ve ever worked for, and allocating every extra dollar toward my mortgage, so if the worst happened, at least we’d have a roof over our heads.

Today, I’m worried about making sure there’s a plan in place if I die, and making sure I can keep earning enough to live on until I can retire.

4. I’m afraid of less. Yeah, I’m worried about those things above, but not much else. Trying to bully, or use name calling, or trying threaten me or my friends will not serve you or your purpose well. Look in the mirror pal, because that’s where the problem really is. You don’t scare me.

5. Diabetes changes, and so do I.. I mentioned this in my post last week about becoming a chameleon. Check it out if you want to know more about what that’s like.

6. As I get older, I am more interested in newer ideas, and newer ways of doing things. I look forward to learning more. Understanding the perspectives of people younger than me. Pushing my boundaries. The Great Spousal Unit doesn’t think any of that is true. I’m looking forward to proving her wrong.

7. That said, I’m as jaded as ever. My default position with people is still to look for the hidden agenda that a person is carrying around. I understand human nature, and I’m not usually offended if you act in your own best interest. But I’m not usually going to trust you either. If I’ve ever told you I believe in you, you are one of the rare people in my life, and I would go through hell in a gasoline suit for you.

8. You know what? I do take a risk now and then. I was convinced we weren’t quite ready to bring a new dog home, and when we did, I wanted it to be a small-to-medium-sized dog. Probably a spaniel mix of some sort.

Then I saw a posting about this loveable creature, and all reason went out the window. She’s been with us for almost a month, and is coming out of her shell more and more each day. She’s a shelter rescue, about 5 years old, she will eventually be about 45 pounds, and she’s a hound dog. Meet Sally:

Many things in our lives change over time, some stay the same, and some come full circle and become what they once were again. The important thing is to embrace all of it as much as you can, squeezing as much happiness from the process as possible.

Let’s step back and review.

Interesting headlines this week out of the annual Endocrine Society meeting in New Orleans, as Medtronic received some scrutiny after a presentation revealed that over a third of study participants using the Medtronic 670g here in the USA abandoned the system.

This is one of those stories where I feel we need to take a step back and consider all sides of this revelation.

First, from what I’ve been hearing and reading from others, this is not a complete surprise. This is also in keeping with word of mouth I’ve been getting from users of the 670g myself. What was most surprising to this observer is that it was actually put in writing and published.

But let’s look a little closer: the study cited in the presentation included only 93 participants, aged 6 to 25… hardly a large cross-section of users of this device. In fact, I know users in their 30s, 40s, and 50s who are still using the 670g.

According to the news report linked above, while the primary reason for giving up on the system was trouble staying in automode, other reasons given included “technical difficulties with use of the system, such as frequent alarms, premature sensor failure, requirement of calibration, skin adhesion problems, and sensor supply issues”.

Most of those other reasons are things we’ve heard before, and should be things that can be improved upon. I also remember reading about sensor supply issues after hurricane Maria hit Puerto Rico… something that, again, should not be a long term issue.

Look, I get it… who wants to sign up to wear a medical device after they hear that 38 percent of users in a study don’t want to use it anymore? But let’s remember this was the first system of its kind approved by the U.S. FDA. While no one was going to make a copycat device, submissions approved after the 670g did have something to go on when seeking approval for their systems.

And let’s be honest: weren’t we all clamoring for faster FDA approvals for new medical devices just a couple of years ago? Weren’t we saying that we’d take less than perfect in order to have a better opportunity at time in range?

Now, before you decide that I’ve taken a stand on one side or other after hearing this news, please remember that I’m trying to stand right in the middle. Of course, if you stand in the middle of an intersection, you run a bigger risk of being run over by a truck. But I digress… what I’m really saying is, finding out that results of a study involving 93 people, all of whom are over 30 years younger than me, isn’t going to move the needle when it comes time to decide on a new insulin pump later this year.

We all have decisions to make when it comes to medical devices we wear, or whether we decide to wear any at all. Those are our own personal decisions. This story gives us more information to go on, but it’s still our decision to make when the time comes.

Being in a position where we actually have the opportunity to choose (I’m looking at you, United Health Care and Medtronic) is what’s most important. Because if either patients or companies are going to make decisions based on headlines like this, in my opinion, those decisions are a bit hasty indeed.

Becoming a Chameleon

The longer my life goes on with diabetes, the weirder it seems to get.

I’ve been experiencing a strange situation lately, where I can tell when an infusion site for my insulin pump is giving out. Or, maybe I can say I can just about tell, with the help of my Dexcom CGM, when it’s giving out.

It doesn’t happen all the time, but when it does, it’s always on the last day before a site change. You know, when you’d rather be doing anything else, and when you’d like the last remaining drops of insulin in your reservoir to last all week.

But there I am on those days, eating low-carb or no-carb, bolusing way more than I should have to, and watching my BGs go up even higher. It’s frustrating.

Sometimes I can finally get the numbers to come down a bit, if I rage bolus enough. But it’s only temporary. Eventually, I’ll start to see another trend upward, and the insulin I had hoped would last for a whole day or more winds up lasting only 2/3 of a day. Even more frustrating.

This is one of the many things that People With Diabetes think about when they consider the burden of living with this condition. Despite our best efforts, efficient glucose management does not come easy, even on the good days. Days like this make it even harder.

But you know, the weird thing about it is that I haven’t really experienced this particular issue until the last six months or so. Even more proof that diabetes is not set it and forget it.

Fifteen years ago, I had a terrible problem with morning highs, and for a while, it seemed like I would never get over it. At some point, however, that problem went away (mostly), and then seemingly, another issue took its place. Now this.

This diabetes is a chameleon, and we’re forced to become chameleons ourselves in order to adapt to it. If possible, while avoiding the trap of feeling like ourselves and our diabetes are becoming one.

I wonder what new issues the coming years will bring to myself and my diabetes. Regardless of the issues, I hope to still be here to experience all of them.

Thanks diaTribe.

Every so often over the next, oh, three or four months, I’d like to take a few blog posts and pay tribute to a few of the institutions that help make my walk with diabetes more informative and meaningful.

Today, I write in praise of diaTribe.

Imagine trying to start, from scratch, an organization (the diaTribe Foundation) dedicated to providing valuable information on everything from accuracy and reliability of diabetes devices, to results of important clinical trials. Then, add in sharing this information online, in a format the average reader (like me and other patients) can understand.

A website where people can get factual information on everything diabetes… and when I say everything diabetes, I mean all of it. The good, the bad, and the ugly, in terms that connect with each individual reader.

Now, imagine also sharing this information in public forums, where many can hear firsthand about new drugs, the importance of time in range, and emerging therapies. Kelly Close, Adam Brown, and others are out there taking part in focus groups and speaking at FDA workshops, helping to advance the art and understanding of managing diabetes for everyone.

I especially like reading the New Now Next and Conference Pearls columns, because they’re great for catching up on things I’m particularly interested in. And the Adam’s Corner columns are great because his perspective is always unique, and one I want to consider when thinking about my own diabetes.

I don’t know how much of all this Kelly Close had in mind when diaTribe began, but she and her amazing organization has been at the forefront of reporting on diabetes research, new products, changes in standards of care, and more in the way few self-sustaining organizations can ever hope to be.

I am happy to say I receive regular updates from diaTribe in my e-mail inbox every week. I can’t say I always immediately go to diaTribe to read the latest, but I almost always go there at some point during the week to learn what I don’t know already, or learn a different perspective on something I thought I already knew. There are very few places on the internet where I can say that’s the case.

Consistency. Reliability. Integrity.

diaTribe.org

Certainly one of my most valuable reference sources. What’s one of yours?

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