Underwhelmed.

It’s back in the news… insulin pricing.

Helped along by a few well-meaning tweets from Senator Bernie Sanders, and maybe a little by the Epipen debacle by Mylan, insulin makers are finally coming to patients and discussing cost in more detail. See the excellent reporting by Mike Hoskins at Diabetes Mine HERE and HERE. It’s good that they’re at least talking about the ever rising cost of this drug. I mean, it’s good, right?

Excuse me while I yawn.

There are countless reasons why insulin costs as much as it does in the United States. One thing is certain: no one wants to break down those reasons for you in any kind of concrete terms. In the case of “pharmacy benefit managers”, they won’t even come to the table to discuss it at all. And in the case of Novo Nordisk, Eli Lilly, and Sanofi, they’re going to talk, but they’re not going to help you understand how much of the cost of insulin goes to them and how much goes to everyone else in this game of legal graft.

This story has really been in the news for some time… I even wrote about it a year and a half ago, after NPR did a story on it. Yet we’ve continued to see the cost of insulin soar higher.

The amount of revenue generated through insulin pricing is in the tens of billions of dollars per year, most of it coming from here in the United States. It’s more than enough for everyone with skin in the game to be rewarded handsomely. Those are just the facts. Like it or not, insulin is a cash cow for drug makers and “pharmacy benefit managers”. Sure, it costs a lot to produce or acquire, but with Type 1 patients especially, they will always have a market for their product. It’s a drug of necessity, not a drug of convenience. I’m not sure there’s any motivation at all for producers or “pharmacy benefit managers” to take action on price.

I hope the discussions that are taking place between the drug manufacturers and patient advocates result in positive steps that will reduce the overwhelming cost of insulin for patients who need it to survive. But I have to be honest: I’m feeling underwhelmed.

Look, discussion is good. It means we’re not forgotten, or worse, ignored. Discussion often leads to things, positive things. I do worry that, as an HIV/AIDS advocate once told a gathering of diabetes advocates, they’re just “checking our box”. Check the box, move on. I don’t think the attendees at the meeting in Washington in November are the type of advocates who will stand for just having their box checked. I hope not.

But for now, I’m in a wait and see mode. Respond to calls for response on insulin pricing issues offered by advocates. Contact my congressman and senators, maybe my state’s insurance commissioner. Spend too much for insulin. Rinse. Repeat.

Underwhelmed.

Thank a diabetes friend this holiday season.

It seems like there’s a term for nearly every day during the holiday season. Thanksgiving, of course. Then there’s Black Friday, Small Business Saturday, Cyber Monday, and now… Giving Tuesday.

Of all of these, I have the potential to like Giving Tuesday the most. I’m at the point in my life where all of the material things I want are relatively small.

I’m not a big “shop big on the holidays this year” kind of guy anymore. Not because I’m old. Not because I don’t want to open up my wallet this time of year, because I do. For both of us at home, it’s more about spending on others than on ourselves now.

I think the idea of giving of yourself this holiday season is something I can identify with and rally around. That’s where Diabetes Hands Foundation comes in.

Today, DHF will make it easy for you to show your appreciation for those who make our diabetes lives easier, happier, more meaningful. Go to diabeteshandsfoundation.org/thanks and share your message of thanks for those who have touched our lives.

For a five dollar donation to Diabetes Hands Foundation, you’ll be able to get a Thank You card that will be displayed on an online pinboard designed to promote positivity and gratitude during this season of wishes.

Want to find out more? Check out this lovely video:

The season of Thank Yous will continue through the end of the year. So in conclusion:

– Helping Diabetes Hands Foundation enrich the lives of People With Diabetes? CHECK.

– Thanking someone who deserves it? CHECK.

– Making people feel good? Helping to bring the diabetes tribe closer than ever? CHECK and CHECK.

This holiday season, remind someone how important they are to your life with diabetes.

Five things I’m thankful for this Thanksgiving.

It is heavy heart time here in my part of the world, as people all over my country celebrate the Thanksgiving holiday, while wondering what the coming changes in Washington will bring. Before we know it, the holiday shopping season will kick in (if it hasn’t already), and December will be another blur.
thanksgiving2016
There is a lot to be anxious about this Thanksgiving. There’s no denying that. But there is still much to be thankful for. So, from me to you, here is my list:
 
 
1. I’m thankful for family this year. Not so much the family that voted the way I didn’t, but there’s nothing I can do about it now. If the subject comes up, my plan is to remind them that they were wrong to vote the way they did (I’m not letting that go), and leave it at that. I can argue about it another day. And here’s something to remember if you’re in the same boat this weekend: presidential elections happen once every four years. Family is forever. If you’re lucky enough to have some family near you, count your blessings in addition to giving thanks.

2. I’m more than thankful for my diabetes friends around the world. I have experienced far more kindness from all of you than one man deserves. I will think about you often whenever I think about the things I am most thankful for this year. And every year.

3. I’m thankful for health insurance. And prescription insurance. I’ve been to the doctor more than usual this year. Just about two weeks ago, I went to the eye doctor for a thorough checkup. It seems like whenever I see a healthcare professional these days, I can’t help but think of the people who do not have the level of access to care that I do, and I can’t help but remember that I’m quite fortunate indeed to have the coverage I have, and the ability to pay for it (for now, anyway).

4. While we’re sort of on the subject, how can I not be thankful for the insulin that keeps me alive every day? It is literally a crying shame that all over the world, people still die after a diabetes diagnosis for lack of available insulin. I am so thankful to have a ready supply.

5. I couldn’t be more thankful for the incredible global force of diabetes advocates that exist everywhere. While they may not all know me personally, they care about me and work to secure and ensure access to drugs and devices, education and assistance, and a fair shake among insurance companies and government agencies. Without our vast network of diabetes advocates, our going would be a lot tougher and our path to innovation would be a lot steeper. They deserve our gratitude every single day.
 
 
Wherever you are, whatever your day looks like, whether you live in the USA or elsewhere, I hope you’ll take a moment and reflect on the things that you are truly thankful for. I’ll bet there are more than a few. There will be plenty of time Friday to rant over things that aren’t perfect. This year, I’m going to spend my Thanksgiving expressing my gratitude and enjoying the people closest to me.

I wish you all the best this holiday season. Happy Thanksgiving!

Yes… I actually did see the eye doctor.

That’s the message I can finally give my endocrinologist when she asks me in January. I needed to find a new ophthalmologist since I had reservations about the doctor I had been seeing before. No major complaints, but I felt that he just wasn’t thorough enough in examining my eyes. And when you’re talking about the eyes of someone who has lived 25 years with Type 1 diabetes, thorough is what you want.

So I moved on. I found a new ophthalmologist, in my neighborhood which is a plus, and I went to see him last week.

Verdict? I’m not so excited about the ophthalmologist, though he’s not bad. He doesn’t know the first thing about diabetes beyond asking “how are your numbers?”. Despite that, I think we started on good footing. I felt he was listening to me. And I really like his assistant, who seems to know a lot and has some grasp of diabetes too. She’s one of those assistants who seems to do all the work, then turns it over to the doctor to gild the lily, whatever that means.
eyeglasses
At the end, I wound up with a new prescription, which I hope will help me see stuff on the computer better. And most importantly, after a thorough exam, there were no signs of retinopathy, glaucoma, or cataracts. I’m good for another year.

It’s a good feeling. A good feeling to get good news from the eye doctor, and a good feeling to know that I’m finally taking care of some of that regular maintenance I’ve been putting off for a while. More to come…

I’m not saying this is a brand new me. I am saying that knowing what’s going on with my health beats worrying about what’s going on with my health anytime.

This one looks different.

It’s November 14 again… World Diabetes Day.

To many of us, the thought of that seems to be a mixture of “meh”, and “sorry… too overwhelming”. Blame it on a disease that produces more than its fair share of burnout, therefore burning us out before Diabetes Awareness Month is even halfway over.

I understand that. Regardless, I was kind of excited about where our cause was. Before our recent election, I had written a quite different blog post from what you see below. Now… well, this World Diabetes Day looks different.

Sure, in the last year, we’ve seen FDA approval of Medtronic’s Minimed 670g. I’ve already spoken with a parent that was so excited about her son’s clinical trial experience on the device she’s already looking forward to the sleep she won’t be doing without soon.

In addition to Medtronic, there are several groups working feverishly on true closed-loop artificial pancreas solutions. Bigfoot Biomedical, Type Zero, Beta Bionics, and several others had us all comparing possibilities and looking forward to our own restful hours spending less time managing our numbers, more time enjoying life (or getting shuteye).

Pause for a moment and consider how far we’ve come in just the past five years. I actually let myself imagine the kind of advances we might see in another two or three.

I was equally excited about the increased scrutiny being given to insulin pricing nationwide. The crescendo of outrage hadn’t bubbled up from nowhere. Diabetes advocates have been sounding the alarm on drug pricing for some time. It was great to see that other voices were finally taking notice.

(image courtesy of Twitter)

(image courtesy of Twitter)


Many of you are viewing this because you consider yourselves part of a larger online diabetes community that supports, coalesces around important issues, and encourages others living with our condition to stand up for themselves and help others to do the same. That didn’t come from nowhere.

In person events like the Diabetes UnConference, online happenings like the weekly DSMA Twitter chats, webinars from countless diabetes advocacy groups, a plethora of diabetes podcasts, and much more underscore the fact that ours is a community that has face-to-face gatherings and every social media channel churning away for the better good of all people living with diabetes.

And people are taking notice, like the American Association of Diabetes Educators, and countless device and drug makers that reach out to us for our input. Five years ago, would you have imagined patients having a real presence at both the ADA and AADE conferences? We, as patients and advocates, were making our mark.

The U.S. Food and Drug Administration had taken the time to convene multiple online and in person gatherings to help make patient concerns (and sometimes, patient and corporate concerns together) a part of their research on drug and device efficacy. That’s not where we were a few years back, is it?

But… we’re living in a different world this World Diabetes Day. In a little over two months, it’s quite possible that millions of Americans will lose their right to healthcare coverage. Millions of voters made a clear statement to say that they’re okay with that. For the record, I am not, and will never be, okay with that. My friends and I have been betrayed by half of America, and it hurts me to my core.

I will take solace today by joining the World Diabetes Day chat for a few hours on Twitter. But…

If you’re burned out on all the Diabetes Awareness Month / Must Do Something Because it’s November, I get it.

If you feel like you and your condition have been given the middle finger by half the electorate, I get it.

The truth is, we have a lot to be proud of this World Diabetes Day. But this one feels different. I don’t have answers or ideas for you yet. I’m still trying to blow air back into my balloon. But know this: I will never turn my back on you.

And: I support you… no conditions.

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