On Lilly's unconscionable insulin price increase

There’s a story about a man who was worried about his wife. She was losing her hearing and she refused to go to the doctor. The man had a close friend who was a doctor and he asked for his advice. The doctor advised him to talk to her while her back was turned and then see how close he needed to get before she would respond. This would tell him how significant the hearing problem was.

The man returned home and sure enough he could see his wife across the house; her back turned to him, doing the dishes.

At the doorway he sang, “Honey, I’m home!”

The wife did not respond.

A step forward.

“Honey, I’m home!” 

The wife continued with the dishes. She did not respond.

A few steps forward.

“Honey, I’m home!” He said hopefully.

Again, no response.

Four steps forward this time.

“Honey, I’m home.” He said firmly, resolutely.

No response.

Taking three more steps, standing right behind her, he whispered, defeated, “Honey. I’m home.”

At which time the wife whirled herself around and yelled, “And for the fifth time. I KNOW!”

Sometimes, it’s hard to tell where the problem lies.

Apparently, Lilly Diabetes is having that problem right now.

They are looking outwardly at everyone else, blaming everyone else for the prescription pricing problems we face in the United States, when really; they have a serious problem of their own.

Their problem is they aren’t taking responsibilities for their actions.

“We have no choice. We have to work this way. The PBM’s made us. It’s how the United States Healthcare System works.”

But we all know Lilly Diabetes is a business. And the bottom line comes first. I don’t care what they say.

Last month I sat in a room full of Lilly executives and they looked me in the eye and made it very clear they know what a travesty insulin pricing is. They KNOW people are suffering. They KNOW it’s a problem. They sat empathetically and listened to our stories, tears in their eyes, nodding their heads. Saying they hear every word. There are individuals and families who can’t pay for insulin. People have died because insulin is too expensive…

Which makes yesterday’s Lilly Insulin price increase all the more disgusting.

The fact that they KNOW their actions are yielding unconscionable consequences, and yet…they continue on the same path with those same actions, taking no responsibility for the havoc that lies in its wake?

Disgusting.

Blame the game, not the player?

Sorry Lilly, you agreed to play. You made a conscious decision to go out onto the field, and you are making a hefty profit because of it. Your agreement with PBM’s is advantageous for PBM’s, yes…but it is just as advantageous for you…. or you would not be playing.

Really, how much does it cost to produce a vial of insulin?

Humalog has been around for 20 years. It is not the newest model. It isn't the hope diamond. It is life support for millions of people with Type 1 and Type 2 Diabetes. (For my children? Take insulin or die: no choice.)

And Canada pays $35 a vial? You can’t tell me it costs more than that to produce a vial, or you wouldn’t sell it to them for that.

Lilly is taking advantage of the system in the United States. Do they glory in the loopholes? Do they revel in the fact that the government has done NOTHING to stop the gouging going on?

But it’s not Lilly’s fault. They can. If it is legal, and they can…why not? (#sarcasmfont)

This quote from the CNBC article hurts the most:

When pricing its products, Lilly takes into account "the value they bring to patients and the healthcare system, as well as current marketplace conditions and the need to fund the development of the next generation of innovative medicines," (Lilly spokesman Mark) Taylor said.

They are pricing according to our desperation for life, and it makes me sick.  What is the value of life? Lilly is going to find out. How far can they go? They know we will go as far as we can to keep the ones we love alive, so they will continue their path.

They are a business after all. 

This entire insurance game needs to stop. A friend on Facebook: “We had a baby last year. Uncomplicated birth, the cash price was $3200. The hospital refused to let us pay that because we were insured. The insurance price was $8000 and our deductible is $10000 so we paid more than twice as much just because we are insured.”

Hospitals, providers, and pharma provide inflated pricing just to make the insurance companies feel like they are getting a deal. They are blind to the consequences to the patient, and their financial wellbeing.

Also, what if we fought to buy our drugs over the border? I know it would be a temporary win, but if we stop playing the game here, and buy from Canada or Mexico, maybe we can force their hand to incite change.

Yes, as stated in my last blog, going to our employers and asking to put insulin on the preventative drug list so Insulin isn’t subject to deductibles is great. It can be an immediate help.

But it’s a Band-Aid.

If insulin companies continue to inflate their prices how will any of this help? Lilly’s rising of their prices RIGHT after our “Insulin Price Workshop” is a slap in the face. And it’s conceivable they will raise their prices again within the year.

We aren’t the ones with the problem, Lilly. You are.

Take responsibility for the clusterf-bomb you are helping to create.

Take responsibility for the lives that are in ruin because of your decisions.

Diabetes is hard enough. You’ve succeeded in making it harder.

My children’s futures lay in your hands and you are gambling with their lives in honor of your bottom line.

I’m going to tell my story to all that will hear. I urge my readers to do the same.

“Honey. We’re home.”

Let's work for better.

If the Grand Canyon was created by water, I wonder how my eyes have yet to become canyons themselves.

Last night as the tears flowed uninterrupted, my husband held me knowing there was nothing he could say. He bounced his feet, rocking me into a relaxed state so my mind could sleep, and ultimately find a little rest.

I worry so for my children’s future. These preexisting conditions that they are strapped with will be a monkey on their back for the rest of their lives.

Will they be able to afford insulin?

Will they be free to see a doctor or a specialist if needed?

Or will they be one of the thousands starting “Go Fund Me” accounts to stay alive?

I feel like I’m failing them.

America has made it clear: The almighty dollar is more important than life.

And my calls to our representatives and meetings with Insulin companies are gleaning no immediate change, and such little hope for the future I wish for.

It’s easy to demonize people, especially when their choices have direct affect on our own lives, and the lives of those we love most. But as I sat in a conference room at Lilly in Indianapolis last month, there was little room to judge the humanness of the people who worked there. They looked us in the eyes and said all the right things. They told us they knew that people were hurting, they knew that they needed to do something. They knew that things needed to change and that’s why we were there. The change couldn’t be made alone, they need us to help.

Which when I type it sounds completely absurd, but yet it is true. Part of me wants to yell, “You got us into this situation, now get us out!” But the truth is, the way American Healthcare works…that is what got us into this situation, and there is absolutely no easy way out.

Only our voices can incite change in the United States Healthcare System. We vote for people to  represent us, they work for us.

(Or for special interests. Or for their party. Who knows anymore.)

But as easy as it is to just throw our arms up in the air and swear at executives and government representatives, we need to suit up.

We need to act, and fight, and voice our frustrations in the right places with the right emotions, at the right time. (Which is now, by the way.)

Lilly has long term and short term solutions. One of the short term solutions is their 40% off retail program that wasn’t fully presented to us because our stories cut them short.

“I appreciate that you are trying to do something, I promise I do, but it isn’t enough. Individuals and families are suffering.”

Story after story of fears for our futures. Story after story of struggling to pay to stay alive.

They got it. Tears were in their eyes. Trust me, Lilly understands the deep urgency of the situation.

While they start work on their end, there is something we can do on our end. We can sit with our HR departments and explain how much we are paying for diabetes supplies. We can ask them to change their plans to put insulin on the Preventative Medicine List. This way insulin will not be subject to deductibles. You’re employer has the power to do this, and it has been shown that it will cost less than a dollar per year, per employee to make the change.

It needs to become the norm for employers to challenge PBM’s (Pharmacy Benefit Managers) on plan design. Employers are at the top of the food chain; they have the power to do this. But they won’t do it if they don’t know there is a problem. There is a good chance your employer doesn’t even know what your family is paying.  On their end, Lilly will work to make sure that the PBM’s pass on the discounts they are giving to us. Right now PBM’s are charging us full price and pocketing the discount difference. They need to feel the pressure from all sides. (On a side note, it is my understanding there will be help resources and even workshops on this topic forthcoming, from a variety of sources.)

Tell your story.  It can make a difference.

Especially now.

Call your senator. Tell them your fears for our future. Tell them if you are struggling now, and if you are not, tell them about all your friends that are.

I know it doesn’t seem like much but small and simple acts are what change the world.

Don’t do nothing.

Call someone. Write someone.  Act.

The more voices, the more the impact. Don’t brace yourself and hope for the best.

Please don’t.

This is a pivotal time in our history. Our stories are powerful. Don’t be afraid to ask for better.

Perfect will never happen.

Let’s work for better.      (Thanks Bennet.)

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There is a thorough overview of the Lilly Diabetes Insulin Pricing Workshop HERE, written by Mike at Diabetes Mine.

Please sign up and join The Affordable Insulin Project HERE. Once it is launched it will be a mechanism to help us find a way to reduce insulin costs.

Lilly’s Blink Health, 40% off retail can be found HERE.

The Lilly Cares Program can be found HERE.

A list of your senators can be found HERE.

A link to the DPAC (Diabetes Patient Advocacy Coalition) App is HERE.

And my love for you and our community can be found HERE, always.

Don't think about it.

It’s all I think about, but I try not to think about it.

I get numbers updated on my phone for all three boys, every five minutes, 24 hours a day.

But, like I said, I try not to think about it.

Last night, while I was trying not to think about it, I was thinking about it and decided to check my youngest’s blood sugar to make sure his Dexcom was accurate. It was. But when I entered the number into his pump to make sure he had enough insulin on board to bring down his blood sugar, I saw that his pump was empty of insulin.

A few hours of no insulin leads to ketones, throwing up, lethargy, and miserableness.

I’m glad I thought about it.

I then thought I’d better check the other teenager. His blood sugar was beautiful, but he had way too much insulin on board. He needed food and he needed it right at that moment. If I had waited a few hours, I can’t imagine what would have happened. Dangerous lows in the middle of the night are my worst nightmare.

But I don’t think about that.

I can’t.

Lying back in bed I see that my college student, who is 1,500 miles away from me, is high. He’s rarely high. I send a friendly text to remind him to bolus and then I try to sleep. I sleep so I don’t have to think about it, but I wake up two hours later anyway and check the numbers on my phone.

The college student’s numbers haven’t moved. Is he ignoring me? Is he asleep? Did he just forget to bolus for a late night meal? Or is his pump out of insulin and he doesn’t know it? Will he wake up with Ketones, throwing up, without me there to help?

I call, even though I’m trying not to think about it.

He doesn’t answer, but texts back a few minutes later.

He had a late night Taco Bell and forgot to bolus before he fell asleep.

He literally wasn’t thinking about it.

That brings consequences every time.

I don’t want to think about the consequences.

At 4am I woke up to go to the bathroom. I glance at my phone and see the number 40 next to my 15 year olds name.

I gasp.

I run.

I feed him.

I check him.

He’s ok.

A fingerstick says he's really 70.

Why didn’t the low alert wake us?

I can’t even think about it.

I woke up this morning, grabbing my phone before my eyes had time enough to focus. I check their blood sugars and beautiful numbers shine back at me.

The boys wake for school, they check their sugars, and they calibrate their Dexcoms. They eat, count carbohydrates, bolus insulin for their food, and leave for school.

A lot of work, but we don’t really think about it.

Its just part of who we are now. An methodical rhythm that beats deep within us.

To really think about it would break us.

It’s too much.

It’s all the time.

But the work is expected. Indeed, the work is non-negotiable.

Insulin keeps them alive but it comes with a million footnotes. Fine print that goes unnoticed by the world, but lived ad nauseam by us.

Diabetes is every moment of every day. It’s a thousand actions and reactions to keep my boys' blood sugars in a safe range.  It’s part of everything.

Yet, to survive, we really try not to think about it.

The Avalanche

Lately I’ve felt a pull to reach out. I know that the feeling of “me too” is an important one, and I know that the “power of same” can soothe shaken hearts and lift us during our darkest hours.

Parents of teenagers with Diabetes, I don’t want you to think you’re alone.

I don’t want you to think you’re a failure.

I don’t want you to give up.

Admittedly, it’s harder than I even thought it would be. It seems pretty universal that our children go through this superstar period where they show us how capable they are. They show us they are as smart as we are, and rise to the occasion every time. Every freaking million and half times...

And then one day they stop.

And it’s frustrating for us, and confusing. They know the work is important. Nothing changed from yesterday to today. They know what to do. WHY AREN’T THEY DOING IT??

We feel like they’re broken. We feel like we’ve failed them. We feel the avalanche has begun and we can’t hold back the boulders looming above their heads. Even if we could stop one, there are thousands more. Why can’t we control the avalanche of numbers? Do not our children see? Don’t they feel the danger? The rocks hit their heads and they aren’t even fazed…

They aren’t even fazed.

I have three teenagers with Diabetes that aren't even fazed.

At first I thought the process of unfazement was stupidity.

But I’ve found the real word I’m looking for: resiliency.

Resiliency: The capacity to recover quickly from difficulties; toughness.

They are coping with the avalanche the best way they know how. By this age they understand what diabetes is. They understand what it can do to their body. They understand the importance of the work. They understand it will never go away…

And so they cope with their teenage superpower: apathy. Because internalizing it all could break them. They aren’t ready for that kind of reality yet. So much to worry about going through puberty…keeping oneself alive on top of everything else can just be too much.

It wasn’t that long ago that we stepped back and gave them the freedom they desired. They earned it. They were awesome. But some of them....most of them...need us to step back in. Our vacations from diabetes were glorious for sure, but vacations are just that…temporary breaks.

Maybe we need to check them when they wake up in the morning, and when they go to sleep at night.

That’s two checks that may not have happened if we didn’t step in.

We may need to begin 2 am checks. The nights are half the battle. We can win it for them.

Maybe we need to remind them to bolus after dinner, even if they roll their eyes.

Maybe we need ask them how much insulin is left in their pumps.

We need to be there for them even if they don’t want us there.

My boys are still my babies. And my babies need help.

There’s an avalanche after all…

And I’ve been lazy. I’ve watched that avalanche and scolded them for not working to avoid it…instead of jumping in and lending a hand.

They need my help.

And scolding isn’t help.

Disgust isn’t help.

Disappointment isn’t help.

The definition of help is offering resources or assistance to make it easier for someone to do something.

I know some kids don’t want “help.”  But I can tell you that now that I’ve stepped in again there is marked relief on my boys’ faces. Yes, it’s frustrating that I have to think for them…but they need me.

They need my help.

They need my reminders.

They need my reassurance.

They need me to take a couple of the boulders to the face for them.

I can take it.

I can help model that resilience. In Psychology Today they say that resilience is that ineffable quality that allows some people to be knocked down by life and come back stronger than ever. Rather than letting failure overcome them and drain their resolve, they find a way to rise from the ashes.

Rising from the ashes? Ouch. That isn't an easy prospect when one is alone. 

But...they're not alone.

We’re better together.

To all of you parents wearing worry as your cardigan…we can do this.

Hard times don’t last forever.

One day they’ll surprise us again.

It’s going to be ok.

We’re not alone.

They're not alone.

Let’s help with our superpower: love. (And our sidekick: the parent face.)

Eli Lilly insulin, 40% off retail.

I’m late relaying this information, but it is important, and might help you or someone you know.

Insulin prices have tripled in price in the last 10 years. It’s not right, and it’s complicated. But Eli Lilly has extended an olive branch of sorts to indicate they are listening and know the cost of insulin is hurting individuals and families.

The olive branch comes in the form of a 40% discount off the retail price of their insulin. For those that pay cash for insulin, or have high deductible plans, this just may be a way to get through these troubling times.

Eli Lilly Diabetes has partnered with a website called “Blink Health.” If you go to the website HERE and register (for free,) you can purchase your insulin with the 40% discount and then bring your electronic receipt to almost any pharmacy to pick up your insulin. It’s really supposed to be that easy.

If you get to the pharmacy and find that your insurance actually does cover the insulin, or you can get it for less, the website will refund your money.

You can do this with almost any insurance, unless you’re on a government sponsored insurance plan. (Apparently there are too many regulations for this to be allowed.) The only unknown is if your insurance will allow you to put this purchase towards your deductible. That is something you will need to call your insurance to find out. Technically, this purchase on Blink Health works outside the insurance industry so you won’t need to provide any insurance information to purchase the insulin. You will need to have a prescription on file with your pharmacy though.

You can leave any questions you might have in the comments section and I’ll do the best I can to answer them. I have contacts at Eli Lilly Diabetes if the question is out of my depth.

I went on the website today and found a vial of Humalog insulin to be $174.34. There is also a $5 discount that will be applied for your first order.

This in no way solves the insulin-pricing crisis, but it helps. And that is what we asked for: help. Thank you Eli Lilly. I hope Novo Nordisk and others look to follow suit.