Monthly Archives: May 2019

The Other Side of the Colorado Success

May 24, 2019 – 2:00 pm

By now, you know that Colorado’s governor signed a bill into law this week capping insulin co-pays at $100 per month. Great news, right? It really is, I guess. But I’m still left with some questions.

The most obvious question surrounds Colorado as the only state to enact such a law. What about the other states? What if other states pass similar measures, but the co-pay number is different in each state?

Colorado caps co-pays at $100 per month. Let’s say neighboring Wyoming decides to cap it at $40… if you live in Denver, would you drive a few hours to pay $60 less per month for insulin if you could? How many other locales might be affected by such a scenario? Might people from Wyoming drive now into Colorado to try to save on insulin? Is that how we want to do this?

Actually, my state of Maryland had a Senate bill introduced in the last session that would have eliminated nearly all co-pays for both insulin and test strips. It didn’t make it to passage, but it was in the same vein as the Colorado bill and in fact, would have gone quite a bit farther.

Should it have passed, I’m sure that a family or two might have considered moving from southern Pennsylvania or Delaware, or even Virginia or West Virginia into the Old Line State (I have no idea why Maryland is called that). Insulin is that expensive.

So I’m concerned about a state-by-state approach to insulin access issues.

I would rather see our federal government, fractured as it is right now, come together on legislation that would really move the needle on this issue. Like eliminating co-pays for all patients requiring insulin and test strips.

And while we’re at it, how about eliminating co-pays for drugs required to treat HIV, or serious allergies, or any number of additional conditions? Basically, if it keeps you alive, no co-pay.

I don’t think that’s too much to ask for. It’s part of why I’ve been to Capitol Hill twice in the last eight months to lobby lawmakers.

I’m happy that Colorado has taken steps to address this issue. Now it’s time for our federal government to make positive progress to address access to affordable insulin, guaranteeing it with federal legislation.

I think that’s something all of us can live with.

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

Ow.

May 21, 2019 – 4:14 pm

Have you ever heard of trigger thumb? I hadn’t before yesterday.

Trigger finger, yes. Leave it to me to have the oddball injury. Or so I thought.

Officially, I have tendinitis in my left thumb. I don’t even know what I did to injure it, but holy hell, it’s been super painful for about six weeks.

It might be from the fact that the mouse for my laptop is set up for the left hand; I did this many years ago after suffering from carpal tunnel-like symptoms in my right hand, especially after busy days and weeks in the office. Since I started using the mouse on the left side, I haven’t felt a twinge in either hand.

But now, I have pain to spare. It hurts (a LOT) to tie my shoes, open a door with a traditional doorknob, and even lift a glass of water. I thought babying it for a while and not using it any more than absolutely necessary would help, but it didn’t. So off to the orthopedist I went.

I have three options right now:

1. Wear a splint, or a brace, with tape around it part of the day and especially at night, because morning is when it really hurts like a sonofabitch.

2. Get a cortisone injection. This is something I can only do a few times, and it carries with it the expectation that my blood sugar would skyrocket for a while after the injection.

3. Have surgery on the tendon in my thumb.

For now, I’m opting for Step 1, because I can’t do surgery right now (for reasons I will not disclose) and because of the whole blood sugar thing with the injection. If I can avoid those two, at least for the time being, I will.

When I posted about this on Facebook last night, I found many people who have had this same injury in their own thumbs. So I’m not alone, though I wish I were. For even more detail, see this from PubMed Central and the National Institutes of Health.

For a guy who’s on the computer all day, I always thought I was pretty adept at avoiding repetitive use injuries. Unfortunately, I don’t think this is the final chapter in this story.

But just like diabetes, I can’t worry about what got me here… I just have to do what I can to give myself the best chance of success going forward.

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

It’s not that simple

May 14, 2019 – 10:11 am

I watched the beginning of a show on my local public television station last weekend. Staged as kind of a talk show, it was really about the people in the show trying to make themselves look smart and caring by telling us how bad sugar is.

That was really all I saw, and all I heard. Sugar is bad… that was the message.

The problem with that statement, or that sentiment anyway, is that sugar, by itself, is not bad. Sure, Americans eat too much sugar. It’s not the healthiest thing in the world. But it’s also not the source of everything wrong with our society.

And saying that sugar is bad has the added effect of making some people feel bad for eating any sugar at all. It’s a by-product, if you will, of demonizing an ingredient for the sake of trying to make yourself look smart.

But people aren’t bad for eating sugar. Heck, people aren’t bad for eating too much sugar. Let’s stop demonizing people too, okay? Things just aren’t that simple.

Eating well, eating healthy, is something all of us would like to do. We’re not trying to go out and eat crap every day. Some of us eat healthy and still gain weight. I’ve been told that most of my weight gain over the years can be attributed to the fact that insulin analogs, while good for people who need them to live, cannot be completely metabolized. So I’ve kept some of it behind in the form of fat. Yay.

My point, however, is that all of us have reasons for why we do, or don’t, have perfect bodies. And it rarely has anything to do with sugar.

Stress. Lack of access to good ingredients. Knowledge of how to create a healthy meal. We had a bad day at work. These reasons and others are all why we may not eat well on a given day, a given week, or a given year. What do any of those things have to do with sugar, or with the kind of people we are?

It’s just not as easy as blaming an ingredient or blaming a person. Instead of finding something or someone to blame, maybe we should be searching for innovative solutions so that ingredients are improved, and choices in eating them, and the people eating them, are more informed and less infused with guilt.

That’s something that I think we can all be proud of and happy to live with.

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

Video: Tell your story wherever you can

May 10, 2019 – 10:11 am

I thought I would share this little nugget today… it’s a story from TRT World, which, according to Wikipedia, is “… a Turkish international news channel broadcast 24-hours per day in English.”

It’s more about affordable access to insulin here in the USA, and though I’m only featured briefly (this is what they aired from almost two hours with me), and though it’s on a channel that few have in the cable lineup, I was happy to tell my story and tell my truth on this subject again.
The video also features Christel Marchand Aprigliano in an uncredited role(?).


That’s what you have to do. If you’re passionate about something, tell your story wherever someone will listen. You never know who it will touch, and you never know what good it might do someday.

Have a great weekend, and keep on advocating!

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

DPAC Champions Ride Again

May 8, 2019 – 10:11 am

Last week was a capital week on Capitol Hill. Advocates joined again with Diabetes Patient Advocacy Coalition (DPAC) for another Policy Training Meeting, culminating in a stellar Hill Day advocating before Congressional staffers.

On April 30 and May 1, over 20 advocates convened to learn the latest on important diabetes issues and how to effectively bring our own stories to bear when lobbying lawmakers. We learned a lot about the issues we were there to talk about, and a lot about how to talk about them.

What did we talk about? Affordable access to insulin, of course. It’s the hot diabetes issue right now, and we wanted to make sure that our House Representatives and Senators didn’t forget that people with diabetes need relief from the high cost of insulin now.

We also talked about H.R. 1840 and S. 814, the Expanding Access to Diabetes Self-Management Training Act of 2019. This one was introduced late in the 115th Congress, and it just didn’t have time to get through before the election. Now it’s back for the 116th Congress.

H.R. 1840 and S. 814 aim to remove some of the barriers in place that are keeping Medicare recipients from learning how to better manage their diabetes today, next year, and for years after that. There’s a lot to like in this bill, and I encourage you to use the links above to find out if your Representative and your Senators have cosigned on this important legislation. If they haven’t cosigned yet, use this link to go to the DPAC website and ask them to put their support behind these bills today.

Now, let me take a moment and talk to you about how important your voice is when it comes to affordable access to insulin, and a better path toward self-management training for seniors in America. Hint: it’s super-important.

Maybe you’ve seen the tweets and Facebook posts from advocates who were in Washington last week, and thought, “I dunno, all that advocating stuff might be over my head”. But it’s not!

There are over 40 people who have taken part in DPAC Policy Training Meetings and Hill Days in the past seven months, and most of us weren’t too sure we could handle it either. But we received great training from Christel Marchand Aprigliano, CEO of Diabetes Patient Advocacy Coalition; Leyla Mansour-Cole, Policy Director of DPAC; and DPAC’s Board Vice President, Stewart Perry. We also received valuable lessons from Diabetes Educator and Pharmacist extraordinaire Jasmine Gonzalvo, and from Logan Hoover, Senior Legislative Assistant to Representative Tom Reed, Chair of the Congressional Diabetes Caucus.

They were able to give us the knowledge that we needed to be able to speak effectively, and the confidence to share the passion we all have for improving the lives of people living with diabetes wherever they live in the USA.

In short, you can do this, and I hope that when the next DPAC Policy Training Meeting is announced, you sign up to be a Champion too. We need your voice. Your voice is worthy.

Do it for yourself. Do it for a family member. Do it because you pay taxes and they work for you. Do it for all of the people who can’t go to Washington but will benefit from your advocacy and passion. When you do, you will leave with a wealth of knowledge and a renewed sense that being a DPAC Champion makes a crucial difference for everyone affected by diabetes.

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