Dblog Week: The Cost of Insulin - I'm looking at YOU, Eli Lilly & Novo Nordisk

What's your life worth? No, really, what's it worth to you? Are you non-diabetic? Give me a figure. OK, now in a second, I changed your life. You're diabetic. Still worth as much? 

What's a vial of insulin worth? Eli Lilly and Novo Nordisk say it's worth a lot of money. More money than ever before. TONS more.  Feel better now? Eli Lilly and Novo Nordisk both increased their insulin price by 7.9% recently. Why, you ask? This is the standard mantra I hear repeated at us in the DOC when we ask: 'It's complicated.'

You know what's complicated? Brain surgery. Heart valve replacement. Advanced Calculus. Getting a 3 year old to stay in their own bed at night. Those things are hard. Providing and making insulin as a company, don't even talk to me about complicated. It's only complicated because they do not want to admit that they want more profit. Hands down profit, on the backs of people with diabetes. Diabetes is the new black.

As of May 2, the list price of Humalog, a short-acting insulin, is $274.70 for a 10 ml bottle, an increase of 7.8% from what the list price had been since July 2016. On May 2, Lilly also took a 7.8% list price increase to Humulin, an older form of insulin. Novo Nordisk, which also makes a short-acting insulin, increased its prices to the drug in 2017. In February, the drugmaker raised its price to $275.58 for a 10 ml bottle, up 7.9% from what the list price had been since July 2016. In December, Novo Nordisk committed to limiting all future drug list price increases from the company to single digit percentages. Novo did not immediately return a request for comment.

Over the last decade, the list prices of the two drugs have increased by 290%. 

Dear Jesus on a bike. What the actual hell? 

I mean, come on folks, more competition in the marketplace, the price goes down, right? 

Oh, you're diabetic. I forgot. For you, the price goes up. They know we need insulin to live.

We are 75 years after the patent for insulin expired. Prices should drop, right?

Oh, ok, they've made improvements to insulin since then. Ok, I will give them that. Faster, longer acting, more stable. But, 75 years???

Then we have the middleman who needs to get paid, the pharmacy benefits manager. The PBM (which I desperately want to call the PBJ in honor of a peanut butter and jelly sandwich) gets rebates to keep our favorite insulins, or our not-so-favorite insulins, on their preferred formulary list. Yeah, we need more transparency here, insurance companies and PBMs. 

There is so much more. I have read it all. Ad nauseum. Over and over and over. And I am done. I have so many articles and websites and hashtags and blogs in front of me, and they are all angry. People cannot afford insulin. We have people in the DOC rationing insulin. We have calls to alarm for those who need it right now and are you in Philly? Cause I can get it to Philly. Oh no, Iowa, crap, we need some DOC members in Iowa. Since when did the DOC become the black market for insulin? Well, since greed took center stage, Eli Lilly and Novo Nordisk. 

There's a time for playing nice and there's a time for harnessing our power, collectively. We, the people with diabetes, and the caregivers of young folk with diabetes, we hold the purse strings. We cannot live without insulin, but we have power, more than we realize.

First things first, DOC, - GET OUT OF BED WITH PHARMA.

I mean it. Right now. Get out of the damn bed. I'll wait. Don't accept gifts and flights and hotel rooms and food and parties and invites and groups and meetings and speaking fees and cocktail parties and little events from them. And while you are at it, some members of the DOC, stop telling me I'm 'jealous because I didn't get invited to an event.' Enough with that truckload of crap. What a reducing of a monumental issue because you think I'm offended. You know what offends me? World hunger, injustice, bigotry and unaffordable insulin. I refuse to take it, the crap and the money. 

And if they support your app, give the money back. Crowdsource the app from the DOC. I'll start with $25.00. Be beholden to no one. If we really want it to change, they'll listen when they don't have money in our pockets.

Write your Congressmen and women. Get the forces that be in our government to investigate price gouging. There are already alerts in the Congressmen and women's ears about this. It's all over the news. Capture it now. Speak to your local reps. Go to your capital. I'm asking for meetings with my two Congressmen and I'm bringing a little pre-teen diabetic with me. Heaven help them.

Hell, let's have a Diabetic March on Washington. Name the time and place, I'm there.

Haven't we had enough, folks? Isn't it about time we demand #Insulin4all - affordable and accessible. Then, let's rise.

DBlog Week: Unexpected Normal

I never expected that this would be normal. I didn't think that one day we would just roll with a 317 BG, like it's no big deal. I didn't think that one day I would not talk about the 39 BG that hit at 3 AM. I thought all of it was everything, all the time. And it was, but now it's not.

Maybe that makes me a shitty D parent. Maybe it makes me a 'normal' one, I don't know. Maybe it just is what it is. After 8 years of the D, and raising a young girl to a teen, I cannot ride the rollercoaster any more. It takes too much of my soul and my energy. 

I used to stay awake all night, watching the 317 lower, or in some cases, get higher. And I wouldn't go to bed until it was 'within range.' It might take 30 minutes, or it might be hours. It was anyone's call how it would turn out. How it usually turned out was I was exhausted and no good to anyone the next day. Same with a very low BG. I used to stay awake for hours waiting for it to rise, rise rise. I still DO stay awake to see the lows come up, but our lows have adjusted. For Grace, a 40-ish BG warrants me staying up, a 50-ish does not.

Instead, I know a strong temp basal increase along with a great big truckload of insulin will get my Grace down from the high. And it will happen within 2-3 hours. And I know that a Juicy Juice and a granola bar will raise her BG about 50 in about 30 minutes. And I give her them and I come back in about 2 hours to make sure they worked. I don't sit and wait anymore. 

The 'new normal' is what is unexpected. It crept up on me. There was no big light switch that turned on, or off, for that matter. It was a slow turning to a manageable life with an unmanageable illness.

Diabetes Blog Week Is Coming!

Thanks to Karen over at Bitter-Sweet Diabetes for the wonderful 8th Annual Diabetes Blog Week each year. This year I'll be writing every day for a week from May 15th - 19th.

The topics are:

Monday - Diabetes and the Unexpected
Tuesday - The Cost of a Chronic Illness
Wednesday - The Blame Game
Thursday - Throwback Thursday: What Brings Me Down
Friday - More Than Diabetes
Wildcard - Diabetes Bloopers

I'm ready to go! See you on Monday!

8 years

8 years of having Type 1 Diabetes. I remember only the date as a nagging place I repeat. 'January 9th, January 9th, January 9th, why does that ring a bell?' I mumble in my brain. It's not on the calendar as an important date. Can you believe that - IT'S NOT ON THE CALENDAR! I thought it would forever and ever amen be on the calendar when I walked out of the hospital eight years ago. I thought I would never forget the day, and the date. Here we are, eight years later, and I cannot recall why the date is important. Funny how time covers it all up.

We are in the teen Grace years now. In all it's glory. 9th grade in High School. Rocking the dance competition team, going out with friends, endlessly on the phone, doing homework by herself and getting invited to parties like it's her job. And we do the diabetes stuff. Every day. Sometimes mindlessly. Sometimes mindful. The 28 BG two nights ago, as Grace staggered into our bedroom at 11 PM, announcing that she would like something to eat right NOW, thank you very much. Yeah, that woke me right up. And I sit at her bedside, remind her to look at me, it will be alright. "I know" she says, as she eats granola bars and juice. "Thanks for sitting with me" as I turn out the light a half hour later. "Go to sleep, I will check you in the middle of the night." "Thanks Mom." You betcha, kid.

Grace talks with her endo about being a teen. She rolls her eyes and gives her opinion. And her endo, bless her heart, sees her through it all. She asks if she smokes and Grace responds "No, I don't and I don't do drugs either." making us both smile snarky smiles. That girl of mine. Her endo gets her. Asks her if she wants to look at her last couple weeks of BGs and Grace responds "Not really, I lived them, I know what they were." I smile on the inside. Damn right you did, girl.

And as we leave the endo office I remind her that one day she will do all of this herself. She looks at me and says that she knows, and most importantly, she responds with "I know what to do, Mom." I know you do honey, I know you do. Then she says "But you'll help me all the insurance crap, cause I WILL need help with those jerks." I laugh and promise that I will. The other things - bolus, basal, pump changes, temp basals - she knows.

There are many days when I don't ask her about diabetes at all, and I don't know a single BG. Can you even believe that? It's called independence, and trust. I scan through the PDM on the kitchen counter every few days and see what she did. Damn it, the girl was spot on. Increased this, decreased that, subtracted carbs cause she was on the low side, cut temp basals. I don't ask her about what she did. I ask her how her day was, if she has homework, what so-and-so said in class today, how she's making it through Geometry. When I do ask, I say "How were your numbers today?" and most often she says "I can't remember, so they must have been fine." Exactly, my dear, exactly. Let them fade away.

I tell her it's her Diaversary on Monday, as it just occurred to me a few days ago. She says "It is? Wow, that went fast!" Yes, it did sweetie, yes it did. Eight years of learning and living and becoming you - strong, resilient, funny and smart. Able to go about your life every day, giving diabetes it's due, but never letting it run your life.

Happy 8th Diaversary, Grace.
Keep on rocking in the free world (look up Neil Young, you will understand).

7 years
6 years
5 years
4 years
3 years
2 years
Year 1

World Diabetes Day 2016 - T1D Looks Like Me

Diabetes Camp - Year 7

7 years of going to diabetes camp. It's Grace's summertime ritual. She looks forward to going all year. Six days of communing with fellow Type 1-ers. Six days of hanging out with her DBFF (Diabetes Best Friend Forever), Lily. These are the days that get her through all the rest of her days. These six days sustain.

She sees Lily at check-in time and she smiles the biggest smile. She has gifts. She hugs and they fall right into their best-friend-ness. The kind that doesn't have any awkward beginnings. The kind you have with an old friend where you just jump right in. They've spent the last seven summers together. I believe they were best friends from the moment they met, seven years ago. They clicked that first summer and been together ever since. It's magic.

Grace had a great week - they swam, hiked the long trails at camp, had campfires and s'mores, went to carb counting and nutrition sessions where she says she learned a lot, did arts and crafts together, had scavenger hunts and singalongs. She changed her own Pod (she does anyway) and kept her own logs of what she ate and dosed all week.

She comes back energized. She comes back OK with diabetes and living her life. She comes back knowing more about what life is like all along the age spectrum. She sees older teens with D and sees what their lives are like - full, rich, involved - and she thinks about what her life will be like.

Seven years of camp. Worth every minute.

Happy 14th Grace!

14 years old and your Mom is a day late on your birthday post. Par for the course right now. Your life is crazy - you are SO busy - that posting to the blog falls to the last thing on the list.

14 and you are wonderful.
14 and you possess an attitude.
14 and you are independent. SO independent.
14 and you are starting to come into your own.

You are an amazing daughter, full of so much life and love.

We love love love love love you.
Here's to a grand 14th year!