Enjoy it While it Lasts

I’ve seen the TV news reports. I’ve read the excellent piece Mike Hoskins wrote at Diabetes Mine.

I’m excited that people are able to go to Mexico or Canada and get insulin at a cost that’s far less than what we pay here in the good old USA.

Enjoy it while you can, folks. Because the thing is… it’s not sustainable.

The current environment that allows people in the USA to go to neighboring countries, purchase insulin, and bring it home for personal use will eventually come to an end.

The reasons for that are many. First among them is that Canada and Mexico negotiate the price of insulin for their citizens. Did you get that last part? For their citizens. Not for citizens of the United States, where our government leaves it to the sellers to determine the price, and the patients to pay the price.

Canada and Mexico will not keep negotiating the price of insulin so they can just allow U.S. citizens to come across the border and pay less. Let’s be honest… they’re being extremely nice to us right now, letting us take advantage of what they’ve worked hard to establish for patients in their countries. Especially given the current political climate, those opportunities may be limited in the future.

Let’s also remember that while a country like Canada may negotiate the price of drugs and devices, the drugs and devices themselves are distributed in specific quantities based on how each province manages its own health care. Ask anyone waiting for an insulin pump or CGM in the Great White North how that’s working for them.

Meanwhile, the citizens of Canada, while getting pretty good health care overall, are paying a fair amount in taxes for the privilege. So, in essence, they’re helping to pay for your low-cost insulin too.

And what if pharmacy benefit managers in the USA catch on to this? They could potentially use their considerable lobbying power to get the government here to clamp down on importation of the drugs they’ve worked hard to establish profit margins on. They won’t give that up without a fight.

Notice how I haven’t mentioned insulin makers yet? That’s because in every other country except the USA, they don’t have to go through pharmacy benefit managers to sell their drugs. For all we know, they might be making a healthy profit elsewhere while PBMs drive the price higher and higher here in the States.

If you’re set on crossing the border and getting insulin sometime soon, I’m not going to stop you, or even complain about it. But don’t expect it to last.

While you’re on the road home, take a moment to thank the governments of Canada and Mexico, and their citizens, for your good fortune.

And when you get back, pick up your phone, write an e-mail, and ask your own government why we don’t have it so good here.

That Time of Day

I don’t know what it is about that time of day, but…

There’s something about 4:00 to 6:00 p.m.

It seems like every single day between 4 and 6, my blood sugar takes a nosedive. Doesn’t matter what I’m doing, doesn’t matter where I am. It’s a strange, strange thing.

This has been happening for years. It goes back over ten years, in fact. Some things have stayed the same during that time, but some have not.

I still work for the same company, though I’ve worked in my current office location for almost a decade. On the other hand, I don’t go to the office five days a week like I did back then. Now I work two days each week from home, and the lows happen on those days too.

On the days in the office, I have about a half mile walk from there to catch the train home. Typically, between the time I leave the office, walk to the subway, get on the train and come home, my blood sugar will drop 50 to 80 points. When I work from home, it will still drop 30 to 50 points during the same time of day.

I’m not as active as I was back when I first noticed this phenomenon. I’m still fairly active for someone my age, but let’s face it, I’m not as young as I used to be either. Who is? My blood sugar is still reacting to this time of day like I was on the spin bike for two hours straight.

Before you say it, I adjusted my pump settings long ago. Between 4:00 and 6:00, I’m getting half a unit of insulin per hour. That’s it. And most days, I could just suspend the damned thing for two hours and I’d be just fine.

One of the hardest things to explain to people who haven’t had diabetes in their lives is the constant changing nature of our endocrine systems. It’s like, they hear you when you say diabetes isn’t “set it and forget it”, but they really don’t understand that it means I need 1.6 units per hour in the morning, and less than a third of that (or less) during those two hours.

And truly, even the regular basal settings on the pump aren’t perfect for each moment of the day, because every day is different, right? Stress, no stress, exercise, diet, caffeine, alcohol, and any number of other things can affect my BGs from day to day, minute to minute.

But if I had to pick a time where my diabetes is most consistent, I’d have to say it’s during that magic time between 4:00 and 6:00 p.m.

What are your dreams for the future?

Earlier this week, I talked about how far closed loop technology has come in the past ten years or so. Today, I want to ask you: What’s next?

In other words, what do you think is next in diabetes care? What are you wishing was next? What do you want your world with diabetes to look like in five or ten years?

Maybe you just care about a cure and nothing else. That’s fair. Perhaps you’re interested in trying a patch pump, whenever it’s available in your country. Or maybe you want to learn more about that implantable CGM you’ve been seeing headlines about.

Would you like to see improvements in software to help you keep track of your diabetes hour by hour, day-to-day, week-to-week? Is there a nifty device you’d like to see developed?

My interests these days not only focus on diabetes, but on health care in general. I’m interested in what people living with conditions other than diabetes experience, and if there are any parallels to diabetes. I want to hear about their interactions with health care professionals, and whether there’s anything I can learn about that.

Of course, I’m interested in how we can improve access for new and existing patients, to help them get the best of what is already available. I will keep fighting for that as much as I can. Same goes for families and loved ones of those living with diabetes.

As far as everyday diabetes goes, two things:

First, I can’t wait until there’s a glucagon solution that doesn’t require a bunch of steps to go from unpackaging to injection. That’s exactly why there isn’t any glucagon in my house. The time has more than come for this. Here’s hoping it gets to approval and into our hands in the very near future.

Second, I think I’d like to see some improvements in insulin pump infusion sets. There really haven’t been changes in infusion sets in the almost ten years I’ve been pumping, and I think there’s an opportunity there for someone to make a difference. Ultimately, I’d like to see a less invasive (read: less scarring) set that could also last a little longer than today’s infusion sets do. I realize that’s a stretch… I’m just wondering if it’s possible, and if it is possible, how to get it from idea to approval.

I realize those are two non-pie-in-the-sky things, but I’d be happy if they happened anyway. And really, any improvement in diabetes drugs, technology, devices, therapy, and access are huge wins for our already too large community.

Now, let me bring it back to you again. What are your dreams, wants, needs, and desires for the future?

Defining Moment

Every now and then, I look back and realize just how far we’ve come in less than ten years. I realize access is an issue, and it deserves its place and time. But for this moment in time, I’d like to focus on the sheer magnitude of advances we’ve witnessed over the last decade.

Part of the story of the birth of this blog comes from a radio interview heard by The Great Spousal Unit one day. She called me at work, very excited, and told me I needed to listen to it with her after work that night.

The interview was about artificial pancreas technology. The year was 2011.

I’ve told this story several times, so if you’ve heard it, feel free to skip down a little farther. If not, here’s a little background:

I had been wearing an insulin pump for about a year by this point, and my diabetes management was okay, though I really had troubles with highs and lows. The averages were good, the peaks and valleys were not.

After we listened to the interview, the conversation went something like this:

Maureen: ”Isn’t that exciting??? I mean, isn’t that really groundbreaking?”

Me: ”Yeah, well, if they could get it to work, it would be exciting. There’s a long way between here and there.”

Maureen: ”I can’t believe you’re not excited about this. You love this stuff!”

Me: ”Okay, it’s interesting. If it works. What do you want me to do about it?”

Maureen: ”Find out about it! Someone has to be writing about it… find a blog!”

The next morning, I googled “Diabetes Blogs” and found the Diabetes Online Community.

Since then, I’ve seen countless talks and presentations and read position statements and FDA guidance on the subject. I’ve seen a lot of the work that was done at the University of Virginia on the subject.

I attended early Children With Diabetes Focus on Technology events where prototypes of the Bionic Pancreas (as it was known then) were displayed and talked about. I’ve been to FDA public workshops where evidence was presented that shows time in range for blood glucose is better than the simple A1c, and backed up with clinical data on closed loop systems.

I’ve seen the likes of Dana Lewis and Tidepool’s Howard Look speak about DIY closed loop systems, part of the #WeAreNotWaiting movement that has really helped accelerate the pace of development.

I’ve watched as now, finally, every insulin pump manufacturer in America has undertaken ongoing work to bring the best of this game-changing technology to people living with diabetes.

Through it all, I’m amazed at the dedication of the hundreds of individuals who have kept this dream alive through research, and through participation in clinical trials, pushing forward, clearing hurdle after hurdle. #WeAreNotWaiting? How about #WeAreNotGivingUp?

Recently, I’ve also thought about how much of an honor it has been, and what good fortune it has been, for me to witness this time. Access issues aside, we are all so lucky to be around during this defining moment in diabetes history.

There are so many interviews I’ve done, so many questions asked, of those working on this. But I wonder if the best interviews, the best questions, the best answers, might come a few years down the line, after closed loop insulin delivery becomes de rigueur. What stories these pioneers can tell!

In the meantime, I’ll be watching and waiting, and cheering the men and women who are changing what diabetes management looks like for this generation and beyond.

Guarding against the next time, preparing for it anyway.

I had a crazy low recently. They don’t happen very often anymore, but on the rare occasions when they do, they’re scary.

It’s hard to describe it to someone who’s never experienced this before. It’s one of those situations where you’re cognizant enough to know what’s happening, but you have to fight like hell to actually perform the task you need to perform to maintain consciousness.

The reason why it happened? Doesn’t matter. Sometimes it’s a more-than-perfectly working infusion site. Sometimes it’s human error. Sometimes it’s unexpected things popping up at the wrong time, a perfect storm.

It doesn’t matter. Not every day will be perfect. Let me repeat that again: Not every day will be perfect.

I tell people who know nothing or next to nothing about diabetes that hypoglycemia, especially this kind of low, is a near death experience. Especially when you’re alone in the house, having difficulty maintaining your balance, using every ounce of energy to get the will to get fast-acting carbs into your system, then hoping they’ll work faster than ever before.

It’s every bit as scary as that sounds.

Technology and Bluetooth options and careful management can only take us so far. As long as there’s insulin and an imperfect way to measure and dose, all of us living with this condition will be on vigilant alert, cautiously guarding against the next time.

And preparing for the possibility that it might happen anyway.

%d bloggers like this: