I need to write a letter.

A little noise came about earlier in the week when people noticed that the stock price of Eli Lilly & Company, a large producer of insulin, had slipped six percent in a single day due to concerns that complaints of price gouging could ultimately hurt their bottom line. According to the Nasdaq report, the price of Humalog increased 10% just in the past quarter alone.

A lot of people focused on a quote from Lilly’s CEO, John Lechleiter, who, in the company’s quarterly conference call, when asked about the big increase in the price of Humalog, said that while the treatment is costly, the disease itself is a “lot more expensive.” Well, thanks a lot for that. Part of why it is expensive is because of Humalog. I think that’s what he was saying there, right? The disease itself is a “lot more expensive”, so the price of Humalog shouldn’t be a concern then, m’kay?

But it was a similar comment on the call from Jan Lundberg, Ph.D., Executive Vice President of Science and Technology, and President of Lilly Research Laboratories, that made me cringe the most. He was asked by an analyst about the “drug pricing debate”, the upcoming elections in the USA this November, how he had mentioned earlier that the industry was beginning to defend itself regarding pricing, and how he sees it all playing out over the next few years. Here is part of his response:
 
 
“In terms of what we can expect after the election, anybody that thinks they can predict the nominations, much less the election right now, I would love to talk to them. But I think this is going to continue to be an issue, or it’s going to continue to be on the radar screen because of demographics. And to some extent, as people get older, they are going to be more and more reliant on our medicines. I think we’ve got to continue to demonstrate that there’s value in the medicines we bring. Yes, they can be expensive, but disease is a lot more expensive. And emphasize the fact that low-cost generics, which account for over four out of five prescriptions today, represent ultimately the legacy of these investment efforts on our part, and provide the American consumer with tremendous value. So I think you can assume the industry is going to continue to maintain an active dialogue with each of the candidates, and to work across party lines to make sure that the views that ultimately translate into policy — and that’s what we’ve really got to be focused on — remain balanced and factual over time.”
 
 
Last time I checked, there were still no generic insulins available on the market, nearly 100 years after the discovery and implementation of insulin as a means to keep People With Diabetes alive.

Just trying to remain balanced and factual here, folks.

So, that really bothers me… the clearly false dialogue that it’s okay to overcharge patients for drugs they cannot do without, because there will eventually be generics available, which there won’t. Ever, without a fundamental change in policy at the governmental level. For heaven’s sake, Humalog was approved for use in the USA nearly 20 years ago.

That’s the frustration. What can I do about it?

I don’t know if there’s much I can do about it at all. But I know what will make me feel better. I need to write a letter.

I say a letter because on the Eli Lilly website, there is not one single e-mail address available. But they did publish the address of the home office in Indianapolis.

Do you want to write a letter too? Does this comment bother you enough to voice your concern?

Address it to:
Jan Lundberg
Lilly Corporate Center
Indianapolis, Indiana 46285 USA

Use your words. Tell your story. Be fair. Be kind. Above all, speak from the heart.

I will be putting together my own message, which I’ll share once it’s sent. I don’t know if it will do any good, but I know it will make me feel better. And it can’t hurt.

It should be noted that Eli Lilly & Company provides a lot of insulin to the IDF’s Life for a Child Programme, which also is helped through donations to Spare a Rose, Save a Child. So we’re on the same team there. Lilly helps provide assistance for people having trouble meeting the cost of their medicines. All initiatives that deserve praise.

They also have an executive who made a disingenuous comment on their most recent quarterly conference call, and that should be noted as well.
 

Diabetes Podcast Week! With the vivacious, committed, and reliable Merle Gleeson.

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You read that right… it’s Diabetes Podcast Week!

Brainchild of Stacey Simms at the Diabetes Connections podcast, this is a week where a dozen diabetes podcasters will be uploading new episodes and helping to raise money for the Spare a Rose, Save a Child campaign. Listen to the beginning and the end of today’s episode of Diabetes By The Numbers for more information on the Spare a Rose, Save a Child initiative and what an amazing difference it makes for children living in developing countries throughout the world.
Insulin should not be a luxury.

Today’s episode of Diabetes By The Numbers features the Superwoman known to her friends and compatriots as Merle Gleeson. In our opening round question, she describes herself as vivacious, committed, and reliable. She’s that and a lot more.

Merle has been living with Type 1 Diabetes for over 50 years. She’s also a Champion Athletes With Diabetes medal winner. Around nineteen years ago, her and a few friends started something called the Type 1 Diabetes Lounge, which holds regular meetings, fundraisers, parties, and more in the Chicago area. It’s quite an operation, and if you’re looking to kick start a local diabetes meetup or amp up the meetup you already have, you can do a lot worse than listening to Merle.

Here then is my conversation with Merle Gleeson, and a special message about Spare a Rose, Save a Child.
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Help save the life of a child living with diabetes in a developing country by donating to the Spare a Rose, Save a Child campaign today: www.p4dc.com/spare-a-rose/give/
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Reference Material – Click below for more information on this topic

Merle Gleeson is founder and CEO of the Type 1 Diabetes Lounge in the Chicago area:
type1diabeteslounge.com/

More about Diabetes Podcast Week can be found at Stacey Simms’ blog:
staceysimms.com

Spare a Rose, Save a Child is an initiative of Partners for Diabetes Change. To find out more about Spare a Rose, Save a Child:
www.p4dc.com
 

A few thoughts on 25.

It was some time Wednesday night when I realized:

This weekend, I will pass the 25 year mark of living with Type 1 Diabetes.
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Like many other diaversaries, this one has snuck up on me. I mean, I knew it was coming, and then I got busy with other things and forgot about it. Now I’m sitting here on Friday wondering what it all means.

I admit that though I was 28 years old at the time, I still don’t remember much about the day or days surrounding my diagnosis. Wait… that’s not true. I remember a lot.

At my first appointment with a new doctor, I went in for a complete physical, told him what I had been dealing with for several weeks (all the typical onset-of-diabetes symptoms), and he got a blood and urine sample. About two hours after I saw him, I received a call from the office asking me to come back first thing the next day. I did, and that was when I received the news that I would be living with Type 1 the rest of my life, and oh, by the way, I had a high level of ketones in my system, though I didn’t understand how serious that was at the time. I still expected to go to work later that day. One thing I’ll never forget is the look from my doctor after I asked him when he wanted me to go to the hospital. I thought he would say, “Let’s get you in next week, maybe Tuesday”. Instead, his eyes got big and he practically shouted “Now!”. The thought of it still makes me laugh.

After three days in the hospital I was sent on my merry way, and I started this long 25 year trek that puts me in the spot where I am now.

I was so different then. Different city, different job, different look, I still had some hair left on top, and a lot more energy. I knew practically no one else living with diabetes and never (I thought) came into contact with anyone else living with diabetes. What this does is skew your perspective. Having no other influences, I tended to trust everything I heard about diabetes, from family members, employers, and doctors too. By and large, they were way off the mark.

They were off the mark partly due to either incorrect or outdated information with regard to diabetes. But they were also off the mark because they didn’t know my diabetes. For my part, I didn’t know that my diabetes and how I managed it might differ from how someone else lived with this disease. I largely ignored my diabetes because everyone else did. I wasn’t in the emergency room or in danger of organ failure. And most of all, I wanted so desperately to live my life without it being pointed out that I also lived with diabetes.

As I grew older, I realized that regardless of what I wanted when I was 28, there was indeed no separating me from my diabetes. One of the critical things I discovered was that that’s okay. Diabetes sucks, but it’s a part of my life, and I won’t, I can’t, be ashamed of that. If I buy into that, it will kill me inside.

You may be wondering whether I’ll be filing paperwork to ask for a 25 year medal from Joslin or Eli Lilly. I’ve thought about it, but to be honest, it’s not a huge priority for me right now. If I get part of a day free where I can compile everything and send it in, okay. If not, meh.

It’s not like I feel I don’t deserve a medal. I do. I even think it would be kind of cool. But I’m also reminded of the people out there who were diagnosed a year ago, or five years ago, or forty years ago who have been living their own version of diabetes hell, all by themselves, ever since diagnosis. Those people deserve a medal too. What makes me more worthy?

What about the people who lived with diabetes for some time, whose lives were tragically cut short due to hypoglycemia or ketoacidosis or some other horrible, unjust happening? I cannot accept something as trivial as a medal without remembering those who were never rewarded, and yet paid the ultimate price.

Okay… positive spin… This weekend marks a milestone, but I want and expect to celebrate many more milestones in the future.

Shortly after diagnosis, I read that a man in the United States living with Type 1 had an average life expectancy of 59 1/2. I know that number should probably have skewed upward since then. But for me, 59 1/2 plus many more years has been a goal since diagnosis. At 28, that threshold seemed very far away. Today, it’s less than six years.

More goals, more milestones, and more celebrating them. Why the hell not? Enjoy your weekend. I’ll be looking back on the great and not-so-great things about my diabetes at 25. Feel free to list yours below.
 

Decision 2014… 2015… 2016? Finally!

Remember that whole “Decision 2014” thing I had going on during the year that my Medtronic Revel pump warranty expired? Should I go with a new pump? What am I looking for anyway? What should I do?

Well, Decision 2014 became Decision 2015, which finally became Decision 2016:
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Stop staring at my late afternoon basal rate.

Okay, so I chose the Animas Vibe as my new insulin pump. I think I’m way past the point of detailing why I didn’t pick another pump, and besides, those companies have lots of employees who have families with mouths to feed, and some of them I know and like and admire, so I’m not going to go into that. If you really want to know, send me an e-mail and I’ll tell you, but I’m not blasting it over the internet for everyone to see.

Instead, I’ll talk about me specifically with the Vibe.

First, even though this pump is generally marketed as a pump with a CGM integration, I chose to only do the pump purchase right now. Why? Because the CGM that’s integrated with the Vibe is the Dexcom G4, which is really good, accurate, and already one generation behind the current model. In the next few weeks I’ll be submitting paperwork to try to get the Dexcom G5. I’m hoping that if the G6 makes its way to the masses sometime in the next year, I’ll be able to upgrade to that. I just didn’t want to be two generations (or more) behind before my insurance would pay for a new CGM.

As far as the pump is concerned, it’s working pretty well so far. Oh, and no, I haven’t been through training with the pump yet. I had it programmed, on, and working within 45 minutes of cracking the box open. I do not necessarily recommend this practice to everyone.

Anyway, the pump is working well. My insulin needs seem to be less than they were with the Medtronic pump over the last year, when it seemed like I was having to bolus extra for every meal just to keep my BGs in a decent range. As with many things diabetes, there may be truth in the fact that the old pump was fighting to keep up, and there may not be any truth to that at all. Let’s see how the next few months go.

I’m getting used to the ezCarb bolus feature, which is pretty simple to work out once you get used to it. I’m doing my best to keep my fingers off of the instant bolus button (my terminology) on the side of the pump. Why I can use this to bolus by the unit without any calculation, but I have to perform several clicks to get to the bolus calculator in the pump is beyond me. I can see a less determined person guessing and instant bolusing all day. And possibly paying the price for it later, if a calculated guess is wrong.

I really like the button on the top of the pump, which gives me an instant insulin on board reading, though I wonder if I can get that to display on the main home page of the pump. I don’t think so, but I haven’t read everything in the pump manual yet.

This pump also has a smaller reservoir than most pumps on the market. Just 200 units, rather than the 300 units offered by Medtronic and the t:slim (they also offer even larger capacity options). I thought that would bother me a lot, but so far, it hasn’t been a big deal at all.

I like having a metal belt clip. I don’t know if it will get bent out of shape eventually and not work as well over time, but if not, I’ll be happy to not have to order a new plastic one every five or six months.

One other thing: This is my choice. This decision was made after careful consideration, and I’ve chosen something that works for me and my diabetes, and how I want to manage said diabetes. Your diabetes may be different, so your decisions may be different, and that’s okay. It’s why we need more choices.

To sum up, I like what I’m experiencing with my new pump to this point. It’s not everything I wanted, but no pump on the market has everything I want right now anyway. In the end, I have something I can live with for four years, after which time, an artificial pancreas solution may be available. So while I’m sad that there aren’t better options for insulin pumpers right now, I’m excited to see just what the next few years brings.
 

Tropical Storm Jonas.

I have a non diabetes-related post today. A few photos of the winter storm that hit the Mid-Atlantic and Northeast parts of the USA over the weekend.

We get storms like this every few years in my part of the world; some years, like last year, we get almost no snow at all. Then we’ll all of a sudden get a monster storm that dumps a couple of feet on us all at once. In this case, the official number was 29.8 inches of snow, in about 28 hours. This storm was also accompanied by tropical storm force winds that caused some major drifts, like around my truck. After I dug everything out, I had to pull my truck back in the driveway so I could shovel away all the snow that was blown under the chassis.

My glucose did not suffer from the storm… on Saturday, while it was all coming down, I went upstairs and put in a hard 50 minutes on my spin bike. On Sunday, I was out for literally hours shoveling things away from the driveway and the walk. We’re told we might get a snow plow down our street on Tuesday. Almost 72 hours after the storm is finished. Lots of roadways to plow, and lots of tired plow drivers out there. But cabin fever hasn’t sunk me yet. I still have coffee and enough food to get me by, and I’m lucky to have power, so I won’t freeze. Yes, I’m a lot luckier than some others out there right now.

So here, kind of randomly, are some photos from the storm and the shoveling. Wherever you are, I hope you’re warm and comfortable today.
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