Monthly Archives: January 2019

Why not YOU?

January 29, 2019 – 12:31 pm

In case you don’t follow me anywhere else on social media, or in case these might have fallen off your radar somehow, here’s one more reminder about two important gatherings coming up this Spring.

Many of you are interested in amplifying your advocacy voices, and rightfully so. In the interest of leaving no vocal stone unturned, I emplore you to apply to each of these.

Just in case you’re wondering, I don’t get anything out of encouraging you to apply… I only get more competition from you, and you get my thanks for using your platform for good.

Both of these gatherings are near and dear to my heart, and both have deadlines that are fast approaching.
 
 
Friday, February 1 is the deadline to apply to attend HealtheVoices, a unique conference featuring over 100 attendees living with 40 or more chronic conditions. You get a chance to learn about each other, and learn what others are doing to impact their communities.

It’s where I got the inspiration to begin podcasting almost four years ago. It’s also where I’ve made friends and allies that I never would have made anywhere else.

Here’s the link to apply for HealtheVoices 2019, April 12 to April 14th in Dallas, Texas.

To read about my experience at HealtheVoices last year, CLICK HERE.
 
 
You have an additional week, until February 8th, to apply to attend the next DPAC Policy Training Meeting in Washington, D.C.

You know how DPAC (Diabetes Patient Advocacy Coalition) makes it easy to advocate on important diabetes issues through their app? This is all of that, in person.

You’ll learn how to effectively bring diabetes to the forefront in front of elected officials and policy makers. On the final day, you’ll use what you’ve learned as we go to Capitol Hill and state our case in the halls of Congress.

It all happens April 30th to May 2. Your passion is needed! Remember to apply by Friday, February 8th.

Here’s the link to apply for the next DPAC Policy Training Meeting. Find out more and apply… your voice is important.

To read about my experience at the last DPAC Policy Training Meeting, CLICK HERE
 
 
I encounter people all the time who never get the chance to have experiences like this. I also speak to people who believe they’re not big enough or important enough to do these things.

But hey, who am I? I’m not any bigger, better, or badder than you are. Why not you? These are two fabulous opportunities open to anyone living with or affected by any type of diabetes, and I hope you take advantage of the chance to attend. If you have questions, e-mail me. Good luck!

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

Why are PBMs escaping scrutiny?

January 25, 2019 – 10:11 am

Well, goody… we get to ponder the implications of another increase in the price of insulin here in the USA. Sanofi and Novo Nordisk have raised the prices of most of their insulins somewhere between 4.4 and 5.2 percent.

As you might expect, this has caused a lot of consternation among those living with and affected by diabetes. As I’ve mentioned here previously, the price of insulin (often, the same insulin) has tripled in the past 15 or 16 years here. People who weren’t previously pissed off are now pissed off, and many who are already pissed off are about to lose it altogether.

I get it. But before you sharpen your pitchfork and start to light a torch (even though no one really ever does those things anymore), let’s step back and consider the whole pricing picture.

Because there’s a lot more than meets the eye when it comes to prescription drugs in America.

Let me ask you: among patients, providers, insulin makers, health insurers, and pharmacy benefit managers, who has never shared anything about what they pay and what they pocket for insulin? Which pane in this insulin window has been the least transparent?

It’s the pharmacy benefit manager.

CVS Health, Express Scripts, and OptumRx are PBMs who, combined, manage prescriptions for 180 million or so in the United States. About 75 percent of the market. They set formularies, those pesky lists of drugs that you can get with a lower co-pay, as opposed to the drug that might actually work best for you.

They help to set prices, playing one insulin maker against another in an effort to try and maximize profit. And they’re probably loving the fact that a lot of the outrage on insulin pricing has been focused on the actual insulin makers themselves.

Yet we don’t know how much they earn off of every vial of insulin they move through their massive warehouses. We don’t know if rebates are involved for insurers, and if those rebates are being applied to lower overall costs for participants in their plans. Or if the rebates are being used to mask an arbitrarily high shadow price for the drug I need to live.

Because pharmacy benefit managers are not telling us anything.

We do know that 75 dollars (USD) a month is about the dividing line for most Type 1 patients… the difference between insulin affordability and insulin rationing to lower costs. That means that an increasing number of Americans, insurance or no insurance, are having to make the hard choice between a life-continuing medication and not paying bills or keeping food on the table.

When did this become okay? This is not okay!

Believe me, I share your outrage when it comes to the crazy spike in insulin prices. Just remember to save some vitriol for the prescription providers too.

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

Sometimes, you just need a little boost.

January 22, 2019 – 10:11 am

So, I had a low the other day. One of those lows that happen from working around the house and eating too little to keep up with the basal on your insulin pump.

I wasn’t terribly low. About 70 mg/dL. I didn’t need to eat all the carbs in the house. I just needed a little boost.

Fortunately, I had a little time, or I wouldn’t have taken the time to do this, though it didn’t take too long anyway.

This is a small dish with some frozen blueberries, a little of my favorite cherry/cranberry juice to help melt and plump up the blueberries a bit. And just a little Graeter’s cinnamon ice cream.

Once everything began to melt, the taste got even better.

Sometimes, you don’t need a gallon of juice or an entire bag of candy to bring you back up again. This brought me up to around 115 mg/dL within half an hour. I was good to go until dinner.

Quite the pick me up on a busy afternoon.

By StephenS | Posted in Recipes! | Tagged , , | Comments (1)

Influences

January 17, 2019 – 11:45 am

I was reminded recently of how much we’re influenced by our experiences. Our surroundings, the things we encounter as we go through life have a profound impact on our lives. I don’t think it’s a stretch to say that.

Genetics play a role too, I suppose. But lately, I’ve been thinking about how I’ve learned, grown, been influenced, and influenced myself, the world I live in.

Small things have been a part of helping to make me the man I am. Big things too. In many ways, influences that seem small to me now may have, in fact, have had a lot to do in how I’ve come to where I am with my diabetes. Even my diagnosis.

I guess we’ll never know for sure about the diagnosis part. But when I’ve thought the past few weeks about how I’ve managed (or tried to manage) diabetes since early 1991, both well and poorly, I’ve been blown away by how much early and current experiences have been a part of that.

I grew up shy as can be, sometimes painfully shy. That led to some bullying, and being excluded from a lot of social situations growing up. By the time I was an adult, I was still a social infant in many ways.

In later years, that led to my insistence that I’ll never count on anyone for anything. Ever. So when I was diagnosed at age 28, I didn’t look for empathy, and I believed that it was up to me to live with diabetes or not live with it. I needed to rely on me, and no one else. I didn’t even want to go to the doctor to get my prescriptions filled, and where I could get away with it, I didn’t.

That helped me in a lot of ways, because I learned how to take care of myself from the very beginning. But in many ways, I also missed out… on innovations and changes in care and a hundred other things. I didn’t even hear of an insulin pump until maybe six months before I started wearing one, years after others had started. Until then, late 2009, I was still eating off of the old exchange diet and failing miserably.

Today, me and my diabetes are doing a little better. And I’m engaged with more people, inside and outside of the diabetes community, than ever before. I’m not only wearing a pump, I’m wearing a continuous glucose monitor full time. I’ve participated in clinical trials. I’m still working on improving my dietary choices, but I’m not doing too bad on that either.

I guess what I’m saying is that we all have things that make us what we are today. But we don’t have to let those influences rule us forever. I am faaaar from perfect. But I’m different than I was, hopefully in a good way.

My focus isn’t perfection. It’s being better. For me, for the people I influence, and for those who influence me.

By StephenS | Posted in Random Glucose | Tagged , | Comments (2)

What I Had to Learn About Living with Diabetes

January 15, 2019 – 10:11 am

I may not look like it today, but I have to admit that I used to be obsessive about a lot of things in my life. I mean obsessive.

Whether it was something I was trying to master for work, or while I was competing in an athletic endeavor (something I still do occasionally), I was pretty intense in trying to perfect everything I did, and criticizing myself endlessly when things didn’t go my way.

Part of the reason for that is probably the fact that I’m at the tail end of the baby boomer generation, the group of kids who all grew up being told we could be the greatest at anything we tried, as long as we beat the other guy doing it.

But then, a funny thing happened. Diabetes happened.

Diabetes is not egalitarian. It doesn’t care how hard you work at it, and it certainly doesn’t care how much you care about being healthy. It’s ready to disappoint you when you least expect it… middle of the night, on your weekend away, right at the beginning of that big presentation at work.

Even when I obsess over everything having to do with my blood sugar, sometimes diabetes won’t cooperate anyway. I can be “compliant” as hell, but the numbers won’t always reflect it. And there’s nothing I can do about that.

That’s one of the biggest things I’ve learned about living with diabetes for almost 28 years. There are no absolutes. No guarantees. Nothing is certain, except that tomorrow, I’ll still be living with diabetes, and I will still be a slave to my numbers.

Diabetes has taught me not to trade in absolutes. It’s taught me that there are no perfect days. It’s taught me that if I work harder today, I’ll still have to work harder tomorrow. And the next day. There are no rest breaks.

It hasn’t been easy. My brain is hard-wired to find a solution and implement that solution whenever possible. But through age, experience, or a combination of the two, the synapses of my brain are being re-wired to look for solutions, work on those solutions, and sometimes be okay with a less than satisfactory result.

Of course, being a slave to my numbers means I have a better chance at diabetes success from day to day. At the same time, I’ve also learned that at any given moment, I may have to remind myself that I’m just doing the best I can.

And that’s good enough.

By StephenS | Posted in Random Glucose | Tagged , | Comments (4)
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