Off the Dial

Diabetes

Lilly Diabetes Blogger Summit

Of course it’s about insulin prices.

I’m just back from the Lilly Diabetes Blogger Summit where they showed us their bid to enter the diabetes device market. It’s a pump and a pen and a connected system and it looks fantastic. More on that soon. But anything that has to do with Eli Lilly, Novo Nordisk or Sanofi is of course about insulin prices right now. The diabetes community is demanding it.  It hangs over every aspect of the conversation. And when a group of people who live with type 1 are in a room with executives, you better believe we bring it up.

(I brought it up here in my initial podcast episode with Dr. Howard Wolpert & Marie Schiller in December; Schiller is the lead on this project, Dr. Wolpert is a key researcher and both spoke at this summit. We did a whole episode on pricing with Mike Mason, Vice President Lilly Diabetes and Dr. Sherry Martin, Vice President of Medical Development a few weeks ago. Listen to those and all episodes of Diabetes Connections on the home page or any podcast app).

lilly cambridge panelThe focus of this two-day meeting at the Lilly Innovation Center in Cambridge wasn’t price or access. But attendees pushed to keep those issues front of mind.  I asked about coverage; like most, my insurance company determines which type of fast acting insulin we use by only covering the cost of Novolog or Humalog. I asked the panel if I can’t even choose what insulin my son uses year to year, how can Lilly assume I’ll have access to this pump system? I also asked if they’d promise this will not be a proprietary system using only Lilly insulin. Many bloggers asked about the current pricing of insulin and urged the researchers and executives to keep those who can’t afford the basics, who must choose between insulin and food or rent and insulin, in their thoughts.

Were the answers complete and satisfactory? Of course not. The people at this summit don’t control pricing or work directly with insurers. They’ve been hired to make a new diabetes device. I’m sure Dr. Wolpert and Marie Schiller in particular would love to announce that Lilly is changing things.  Schiller has lived with type 1 for more than 30 years and Wolpert’s wife just marked 50 years with T1D (his Dexcom Follow App went off at our dinner with an urgent low for her, while I was watching my son’s BG creep higher).

Personally – and this is all speculation on my part – I think this is going to be addressed with policy in the next few years. There is a backlash building right now to pharma prices within and without the diabetes community and the threat of taking away Obamacare and other issues will usher in more left-leaning/progressive candidates in 2020 than anyone would have predicted a few years ago. My unsubstantiated thinking is that Lilly senses that insulin prices will soon be limited. Entering the device market gives them a new revenue stream using existing product.

Cyniscim aside, the Lilly system itself is really cool. If it were available today, I’d want Benny to try it and I think he’d love the size, shape and features. Glu did a nice quick write up as did DiaTribe.  The pump is a small disc, about the size of a stopwatch or even a large poker chip, about two inches across and very thin, maybe half an inch. It will have longer tubing options so you can wear it in your pocket or shorter tubing so you can stick it to your skin. The pump is controlled on your phone (or a dedicated controller if the FDA is still fussy about that when this comes to market in 2-3 year) but can also give limited doses from the pump device itself. Huge for people who like the idea of a patch pump/pod pump, but hate the idea of losing the controller and not being able to use the device (i.e. me).

I was disappointed that Lilly plans to use current infusion sets with this system.  Since we started pumping, I’ve said that the inset is the weak link and studies prove that. Does anyone love the inset they use? I was hoping this system would show us a breakthrough. But first-gen here means using what’s on the market.

There’s an insulin pen as well, which is meant to be used with any CGM or meter. Everything is connected with an app and an “ecosystem” that acts as a closed loop for the pump and the closest thing you can get to one with the pen – predictive dosing, etc. Lilly has chosen to go for the closed loop out of the gate and not release the insulin pump as a standalone. They’re working with Dexcom, DEKA, Rimidy and McGill University to make this all happen. Reps from those companies made up a second day panel (not pictured),

I’m still not clear why Lilly thinks this can succeed when Animas (backed by the not-tiny Johnson & Johnson) just closed up shop. I did ask that question and was told that because they’re committed to this and believe in this product, they’ll succeed. I hope so. I want them in the market. I want more choices for my son and I want more access and better prices for everyone. This post may sound cynical, but I’m excited about this system.  It looks like it will take more burden off the user and I believe the people involved are committed and passionate about making diabetes easier.

I’m not so naive to think my questions will change the world, but I’ve worked hard for a seat at this table. I take that responsibility seriously and I’m not going to waste my voice when it can be heard.

Lilly paid for my travel and lodging for this summit.

 

 

Diabetes Podcast Week 2018

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“Why on earth would you promote other people’s podcasts?”

I’ve been asked this question a lot since I started Diabetes Podcast Week in 2016.  In radio (my past life) you would never mention a competitor’s name, let alone link their show up on your site. But podcasting is different. And podcasting about diabetes is completely different. I’ll explain more, but first…

Diabetes Podcast Week kicks off February 11th! More than a dozen show hosts will rally their listeners to learn about and donate to the Spare a Rose, Save a Child campaign. The idea behind Spare a Rose is simple: buy one less rose this Valentine’s Day and donate the value of that flower to children with diabetes. Donations go to Life for a Child, an International Diabetes Federation program which provides life-saving diabetes supplies, medication, and education that children in developing countries need to stay alive.

You’ll see a lot of posts and information this month about Spare a Rose and Life for a Child. During #DPodcastWeek we’ll talk about the campaign on our shows, but mostly it’ll be the same great info and conversations about T1D we strive to create every episode.

spareIDFI’m excited that this year, you’ll hear some new voices on familiar shows. A lot of the hosts have made promos that will play in the other podcasts.  Which brings me back to why competition isn’t really a thing here. In podcasting, you listen when you want. You don’t miss my show if you listen to another. Most podcast listeners subscribe to more than 4 shows and many listen to 10 or more every week. And with diabetes, we all have a different story. Find the show and the host that speaks to you, as a parent of the T1D child, as an adult with diabetes as a person who wants info about food or sports or whatever. It’s all out there. Don’t believe me? Here’s this year’s list:

#DPodcastWeek 2018:

Beta Cell Podcast – Craig Stubing

Bravest  – Craig Kasper

Chronically Motivated – Chris Ruden

Diabetes Connections – Stacey Simms

The DiaCast – Adi, Brent & Cas

Diabetes by the Numbers – Stephen Shaul

Diabetics Doing Things -Rob Howe

Diabetic Running Podcast – John Foti

Divabetic – Max Szadek.

The Guilt-Free RD – Melissa Joy Dobbins

Just Talking – Christopher Snider

Type 1 Entrepreneur – Chris Stocker

Real Life Diabetes – Amber Clour & Ryan Fightmaster

Want to jump in or learn more? Get in touch: stacey@diabetes-connections.com.

Make sure to tune in! Diabetes podcast week begins February 11, 2018.

Diabetes Forecast: People to Know

“Diabetes Forecast®, the Healthy Living Magazine of the American Diabetes Association, names Stacey Simms as one of 12 People to Know for 2017.”

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Me & Ben Vereen? Are you kidding? What else to say, but thank you!? (Click here to see the issue online)

Thank you to the editors and the committee who puts together the issue. Thanks to Jonathan Shuffield who interviewed me for the issue and editor Kelly Rawlings who informed me I was on the list. You can hear both of them on the podcast this week (click the handy player down below to listen right now).

But really, this is a thank you to you, my listeners. I’d like to say I started Diabetes Connections because I had a singular desire to help people. That I wanted to help newly diagnosed families realize it would be okay and help long-time T1Ds find new inspiration and motivation. Honestly? It’s because I couldn’t stop talking back to my radio.

After working in broadcasting my entire career, the brutal hours finally caught up with me. But when I left my early morning radio job, I found myself talking back to the podcasts I listened to, the radio shows I enjoyed. One day while walking my dog and yelling at Terri Gross, I knew I had to start my own show.

Just over two years later, to have this kind of validation is an incredible feeling. But it only confirms what I already know from emails, social media messages and, when I’m really lucky, in-person meetups. Listening to the voices of our community is helpful. Hearing stories of connection is vital. And knowing we’re not alone is invaluable. I’m here to tell those stories. Thanks for allowing me that privilege.

(click on the big blue play button to listen right here)


 

 

More Than Diabetes #DBlogWeek


Lets wrap up the week by sharing a little more about ourselves, beyond the chronic illness we or our loved ones live with.  Share an interest, hobby, passion, something that is YOU.  If you want to explore how it relates to or helps with diabetes you can.   Or let it be a part of you that is completely separate from diabetes, because there is more to life than just diabetes!  (This topic is a suggestion from the 2016 #DBlogWeek survey.)

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I’m glad the last day of Diabetes Blog Week asks us to write about something other than diabetes. Turns out, I was unable to participate in most of this event this year, and for once, diabetes wasn’t to blame. Amazing, right?

Most of the stories I share are about my son with type 1, or my family’s experience with diabetes. I rarely talk or write about my daughter or share a lot of stories about my kiddos that don’t have to do with T1D. They’re at the age where they’re old enough to have their own stories. And we have a family policy of not over-sharing on social media. That means I don’t get to brag about the good stuff often enough to satisfy me, but it also means fewer possible embarrassments for them later on. I hope!

This past week, my daughter needed me. Do you know I have a daughter? I do! She’s 15, she a great kid and the total package of smarts, looks and sarcasm. (You can listen to her one and only public appearance on the podcast here. Kid doesn’t like public speaking or attention. The family rebel!) Something came up, it took more time than she usually needs from us, and now everything is back to normal.

Sure, I’m a D-Mom, but I’m also just a regular mom. And sometimes diabetes can go into the background when more important stuff comes calling.

Lea in 2007(!)

Lea in 2007(!)

 

Learn more about Diabetes Blog Week here and go read some terrific posts!