Tuesday, May 16, 2017

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.

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.


Kelley said...

Yes to this post!

Mike - everydayupsanddowns said...

Wow! Fiercely said. And well said too.

Hope you guys manage to make progress on this. How the same company can hope to excuse 10x price differences in UK vs US is just bewildering.

More power to you sister!

Joanne said...

I'll march to that!

Karen said...

I do see your point, but I also worry that ending conferences would end conversations. I hope for a middle ground somewhere where both sides can work together.

Rick Phillips said...

In the end we have to have conversations in order to make improvements and since the DOC is not one organization but a group of people who have purpose, I am not certain there is a way to get a consensus without talking to other stakeholders. Finally who would we send to talk on our behalf? This is a group of volunteers doing the best they (and I sometimes) can.