Some round-up thoughts this #NDAM..

For the past several years, I’ve used the month of November to showcase people in my local area living with type 1. You can head over to my public Facebook page or Instagram to see the pictures and read their stories. If you found this post and you live in the Charlotte, NC area, please consider joining our parent group or one for adults living with type 1.

Thanks to the Charlotte Observer for publishing a column I wrote, “What the Diabetes Community Wants You to Know.” I asked my podcast listeners for their ideas and I was thrilled with what they came up with. I heard from several people outside the diabetes community who thanked me for opening their eyes to what living with diabetes is really all about.

On World Diabetes Day (Nov 14th) I was asked to stop by my local NBC affiliate to do some basic info stuff.  Always fun to go back on the news (I spent 10+ years in local TV and another 10+ in radio).

There are too many terrific blogs, Facebook posts and other stories to list here. But please consider following the hashtags #NDAM #DAM #DiabetesAwarenessMonth #MakeDiabetesVisible and #T1DLooksLikeMe to connect with great people. And we can do that all year long!

“They won’t let me on the school WiFi!”

“They changed our staff and we only have a part time nurse!”

“I’m just going to sit the parking lot all day.”

The back to school posts have begun. But don’t panic! Here’s what you need to know when you send your child with type 1 to school:

It’s going to be okay.

I’ve been there. I know the worry. My son was diagnosed at 2 and is now in eighth grade. We’ve had our ups and downs, in school and out with T1D.

In our local Facebook group, the big questions are about CGM and remote monitoring.  At least two large area districts seem to have changed their policies about staff following students’ CGM systems at school. These are schools that last year allowed staff to follow using dedicated devices left at school. We’ve already seen many schools ban staff from using personal devices for that purpose.

This week on the podcast I speak with Crystal Woodward, the director of the American Diabetes Association’s Safe at School program. We focus on daycare, preschool and elementary school. We talked about CGM and working with schools through disagreements, but we this issue of sudden policy change came up after our conversation.  I circled back with Crystal and she said, “If you are seeing these posts would you please respond by suggesting that they call the ADA at 1-800-diabetes or email us at askada@diabetes.org for information and guidance.”

She also said that the ADA is working on updated CGM guidance (she mentions this during our interview). Right now, they believe that “the use of data share capability should be based upon individual assessment of each student. It can be a useful tool for all stakeholders and that the family, health care provider, and school nurse should work together to determine an agreed-upon approach and process for using.”

Here’s my take as a mom of a kid who didn’t have a CGM until age 9 and no remote monitoring until he was in 5th grade. I honestly don’t know how these nurses follow all the kids at big schools and do everything else their jobs require. We have more than 1000 kids at some local elementary schools! I am 100% in support of parents and their medical care team creating a school plan that works for them, but I worry that parents think if someone isn’t watching their child’s receiver all day long that the child is going to be ignored.

Remember, until about three years ago, there wasn’t a kindergartner in the country with remote share options. The schools, doctors and legislators are playing catch up as the technology moves faster than the policy and legalities. Not saying you shouldn’t push; I love our Dexcom, but it should be a useful tool, not a burden.

I do think these schools need to get their policies straight, consistent and well-publicized. The first week of school is not time to be springing new stuff on stressed out parents. That’s just not fair.

What can you do? Treat your school staff like part of your care team. Use that kind of language: “our team,” “working together for the same goal,” “how can I help?” Save the torches and pitchforks for when you really need them – and unfortunately, some parents really do need to fight; I know not every school staff is supportive and helpful. Know your state laws (click here for a state-by-state guide) and don’t be afraid to call an advocate or even a lawyer. But that should be the last resort, not the first option.

I hope this week’s show helps you learn more about your rights, federal law and school policy. I also hope it helps to hear Crystal and I talk about sending our kiddos to school with “older” tech. Her daughter was diagnosed at one and is now a healthy, happy 27 year old ICU nurse. Benny tells me he’s a “senior in middle school” and he’s ready to take on the world.

Wishing you a great start to the school year!

Listen to this week’s episode here, on the home page or on any podcast app

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).

The 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.