Author Archives: StephenS

Hello… I’m Stephen. I live in Baltimore, Maryland, USA with The Great Spousal Unit, Maureen. I’ve been living with Type 1 Diabetes since January 1991. I’ve been a pump user since April 2010, and I’m currently wearing the Animas Vibe pump. Also wearing the Dexcom G5 continuous glucose monitor.

I found the Diabetes Online Community in the summer/fall of 2011, and that discovery has changed my life. I started this blog in April 2012, and since then, my diabetes advocacy has continued to grow. Among other achievements, I’ve attended and spoken up at FDA workshops and participated in clinical trials.

I’ve been thrilled to serve as a facilitator for the Diabetes UnConference. And I’ve been honored to volunteer for Diabetes Patient Advocacy Coalition. You should Google both of those.

I’m currently serving as a member of the State of Maryland’s Advisory Council on Health and Wellness, where I am co-chair of the Diabetes committee. In addition, I’m part of the 2018 Reader Panel at Diabetes Forecast magazine.

I’m always searching for the perfect balance between the highs and lows of my blood glucose level and my life… always searching for the Happy Medium.

Anything you’d like to share? Please let me know… I’d love to hear from you.

A lot of zeros.

April 10, 2015 – 11:06 am

Like many, I’ve seen and heard the recent NPR story:
Why is insulin so expensive in the U.S.?

The story is based on research from Dr. Jeremy Greene from The Johns Hopkins University in Baltimore (still trying to get an interview), where he is a professor of medicine and history of medicine. He did some research on the history and cost of insulin, and published his findings in The New England Journal of Medicine.

The truth is, we all know insulin is very expensive here. And we all have our own opinions on why we think insulin is expensive here (where are the generics?). After reading a few of these stories this week (because diabetes stories with an impact aren’t reported for months, then the same story is reported by everyone in a few days), and then reading comments below each piece, I started to become overwhelmed.

Partly, it was because of the numerous “facts” presented by commenters; and partly, it was because of the fact that I felt the really difficult questions haven’t been asked or answered on this yet. Regardless, I started to feel information overload coming on.

For me, when that happens, I usually try to pull back and simplify the subject at hand. I may not solve the problem this way, but it gives me a good starting point. So that’s what I did. I did some initial research into market share for the three big companies selling insulin in the States. I also researched how much insulin costs me, about how much I use on a monthly and yearly basis, and then I extrapolated that (which is fancy talk for multiplied) by the number of people taking insulin in the USA. I wanted to be conservative in my calculations.

This is not scientific… this is just designed to take a typical Type 1 customer (me), and consider the cost of the life-giving medication that I need every day. How much are me and my D-peeps, and our insurance providers, shelling out for insulin?

According to Dr. Greene’s research paper, there are currently 6,000,000 patients taking insulin in the United States.

I looked at the cost of insulin from my prescription provider for Lantus, Apidra, Novolog, Levemir, and Humalog. According to my prescription plan, the cost of a 100 unit insulin vial (my cost plus my employer’s cost) breaks down as follows:

Lantus (made by Sanofi-Aventis): $250.01
Apidra (also made by Sanofi): $204.56
Novolog (made by Novo Nordisk): $204.65
Levemir (also made by Novo): $250.01
Humalog (made by Eli Lilly & Co.): $204.01

Humalog is not my insulin of choice, but it’s the cheapest in the list, so let’s go with that as a benchmark. In fact, let’s just round that number down to $200.00 to make the math easier. And to make it even easier, let’s say that I use one 100 unit vial of insulin every month. At that rate:

$200.00 per month X 12 months per year = $2,400.00

Now, let’s go a bit further (but not too much), and multiply again:

$2,400 per year X 6,000,000 insulin users in the USA = $14,400,000,000

That’s a lot of zeros, people. And this is just the United States we’re talking about. In fact, research from 2013 suggested a worldwide insulin market of $21 billion dollars in that year alone. And we know that there aren’t any fewer people living with diabetes in this country, or around the world today.

But still, let’s take that conservative $14.4 billion number and break it down by market share across these three companies. Again, there is no way this is science, but it should give us some sort of ballpark estimate of the amount of gross revenue that Sanofi, Lilly, and Novo are generating. The only data I could find on market share goes back to 2011, and is contained HERE. Since that is all I have, that is what I’m going with. Again, I’m just ballparking here. I’m not trying to arrive at the actual-to-the-dollar accounting involved, because how could I? Here we go:

In 2011, Sanofi-Aventis had a 37% value share of the market. Of our $14.4 billion, that would be:
$5,328,000,000

In 2011, Novo Nordisk also had a 37% value share of the market. Of our $14.4 billion, that would be:
$5,328,000,000

In 2011, Eli Lilly had a 26% value share of the market. Of our $14.4 billion, that would be:
$3,744,000,000

Let’s be honest here, and recognize it takes lots of research and development, plus a lot of clinical trial testing, plus building out production of the drug, providing documentation to patients and doctors, and a lot of other things to bring a new insulin to market. What would that cost, exactly? A billion dollars? Two billion? If it cost three billion dollars for Lilly to bring Humalog, my lowest costing insulin to market, they almost certainly would have made a profit on their investment in one year alone. In this country alone.

You know, we still haven’t solved the “Why are there no generic insulins?” question. But really… why would there be? If you’re a director of one of these drug makers, or a shareholder, and you, or someone you love, doesn’t live with diabetes; or you can afford insulin regardless of the cost; why would you not want to fight tooth and nail to keep low cost alternatives out of the hands of patients?

This is where I like to remind people that making a profit is good… until it starts to affect someone’s well-being in a negative way. Then this practice must be stopped. Just like patients should trump proprietary, patients should also trump profit. Believe me… there is still plenty of money to be made.

Guess what? It costs a lot of money to buy insulin to stay alive too. I think… I hope… we can find a—dare I say it—Happy Medium here. I’ll be okay with drug companies making money on insulin, if they’ll be okay with me affording said insulin so I can stay alive. For a long time to come.
 
 
 

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Wordless Wednesday: Kryptonite.

April 8, 2015 – 6:58 am

I like to change things up once in a while. I love my Glucolifts to help get me up from low blood sugar. But every now and then I like to get something else to put in my pocket, and it provides a nice change of pace so I don’t get burned out on the Wildberry, which is my absolute favorite.

This week, I decided to get these little buggers, and I put a few in my pocket for… well, you know. I even needed a couple on my way home from work yesterday, and I couldn’t understand why they didn’t seem to bring me up at all. I also experienced some serious gastrointestinal discomfort through the night.

This morning, after closer inspection, I found out the reason why:

DSC02192

After this experience, I’ll be happy to run back to my Glucolifts.

And God help me when I get older and have trouble reading my prescription bottles. I’m only half kidding about that.
 
 
 

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What you do makes a difference, even if you’re not sure how.

April 6, 2015 – 11:03 am

Friday morning, I went down to my local American Red Cross office and donated blood (yes, in the USA, you can live with diabetes and donate blood—see more HERE).

The beginning of these appointments are usually pretty clinical, full of process-related steps that everyone has to go through before they actually stick a needle in your arm and do what you came for. At that point, things tend to open up a bit, because if they didn’t, you’d just be hanging out, you and the phlebotomist, with nothing to do for a while, and that would be kinda boring.

That’s when I try to get the phlebotomist to tell a funny story, or I try to tell one, and that keeps the conversation going while I squeeze on a little foam ball every three to five seconds during the “donation process”.

This time, after telling of my low adventures after the last time I donated, I asked the technician (name withheld) if she liked what she did there at the American Red Cross. I wasn’t prepared for what she said next:

“Oh yeah, I love it. I really do. When I started this job, I just thought I was collecting blood, and that was all. Then, my Mom was injured, and she needed at least a unit of whole blood every day for almost a month. One day, when I was visiting her in the hospital, I saw them hang a unit of blood and it had a sticker on it saying it came from my center. I just broke down and cried. I knew right then that I was making a difference, and I’ve never looked at my job the same way again. I love it.”

Maybe you’re raising money for a diabetes walk, hosting a D-meetup, or agitating elected officials to approve legislation so senior citizens can be covered for continuous glucose monitors under Medicare. If you do those things long enough, they can begin to get monotonous, and you may start to wonder if what you’re doing makes any difference at all.

Well, when you do, remember our technician’s story. And remember, like I’ve said before, if you make a positive impact on just one person’s life, that’s an impact that in most cases would not have been made if it weren’t for you. You make a difference, through the things mentioned above, and just by continuing to live well with diabetes. Even if we don’t get as clear an indication of our difference-making as my friend at the Red Cross.

If enough of us concentrate on helping that one person live better, healthier, happier; then eventually, those individual successes will steamroll into a greater success story than many of us could imagine. Until that day, let me say:
Thank you for making a difference.
 
 
 

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The world is a pretty big place.

April 3, 2015 – 8:09 am

I’m up early for a day off.

I’ve showered, had breakfast, and in a few minutes, I’ll be heading to my local American Red Cross location to donate blood.

This is partly due to my responsibility as a person, I believe. It’s also about helping where I can. I can do this, it will help people, why not?

I suppose there’s an element of faith in there too. I’m giving blood on a day that symbolizes the day that Jesus shed his blood on the cross. The irony is not lost on me.

As a white christian male in the USA, I’m not persecuted for anything at all. Oh, I may occasionally run across someone who doesn’t like me for who I am, but that’s pretty rare. For the record, I don’t really need a “religious freedom” law to be able to practice what I believe in. With, and for, whomever I want to share it with. No exceptions. I don’t go to church often anymore, but I know that Jesus would not turn anyone away. No exceptions.

That’s faith, and living in the belief that I’m not perfect, but I’m not helpless either. So if you’re asking me, I say take your stinkin’ “religious freedom” hate legislation and trash it. It is wrong, and it’s not hard to see why.

I hope your Passover or Easter is lovely, warm, and full of inclusion.

I support you… no conditions.
 
 
 

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I don’t know from Glycemic Index.

April 1, 2015 – 9:39 am

I’ve been trying out those sliced bagel things that I’ve been seeing in my grocery store lately. You know, the ones where the bagel is sliced horizontally into three or four slices, so you don’t have to choose to eat the entire thing at once (which, I admit, I am prone to do). I like a nice bagel in the morning, but in the last year or so, they have been affecting my post-prandial numbers to the degree that the bagel goodness wasn’t a good tradeoff for a mid-morning (or noontime) high BG anymore.

So I’ve been trying out eating about half the bagel for breakfast, instead of the whole thing. And guess what? The numbers still suck. And that’s frustrating. I can still eat a donut occasionally (about twice a year), and it doesn’t affect me this much. I’ll have an occasional pancake, and while I get an initial spike, I can usually bring it down well in advance of my next meal. Other things, like bagels, biscuits, and certain breads, forget about it. Zoom-pow! To the moon!

But it wasn’t always this way. Yes, those products have always caused higher numbers, but not to the degree, and as long lasting, as they do today. I’m not eating these things for every meal, or even every day, or even every week for that matter. But when I do, my blood sugar does not like it very much. Now I’m trying to find out why, and particularly, why now, when this wasn’t as much of a concern as before?

Hey, listen: I don’t know from glycemic index. I’ve been living long enough with diabetes (and been told by too many) that things like donuts and Chinese food are bad for my blood glucose; and celery and carrots and nuts and tree bark are good for my BGs. Unless, of course, it’s that sappy kind of tree bark. Okay, now I just want waffles…

Anyway, it’s not much farther from there where my knowledge of how specific carbohydrates react specifically to my diabetes ends. (It’s okay… I’ll wait a second in case you need to re-read that sentence)

I think I need to educate myself a little more about the Glycemic Index (if that’s what I really need to concentrate on), and how each item in my diet will affect me. Fortunately, I have lots of resources at my disposal: a simple Google search on “Glycemic Index” returned 1,670,000 results. The University of Sydney has a great search tool where you enter a food and it returns the glycemic index and the portion size that resulted in that index number. The American Diabetes Association has a super informational page on GI that, among other things, identifies low glycemic index foods as those with a score 55 or under. Medium GI foods are scored between 56 and 69, and High GI foods come in at 70 or above. The Harvard Medical School has a web page with over 100 food items and their GI numbers, including Raisin Bran and Snickers bars. Which I don’t really eat anymore.

Of course, like everything else having to do with my diabetes, these are great reference tools, but the devil is in the details. Nothing about a glycemic index chart will tell me why I react so poorly to something that I did not have a lot of trouble with before.

I like to kid people and tell them that the only two vices left in my life are salt and alcohol, and while I want to enjoy them for as long as I can, eventually I’ll have to give those up too.

Now it looks like I may have to add bagels to the list.
 
 
 

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