Thursday, November 3, 2016

A discussion with Eli Lilly about insulin prices.

I had a face to face meeting with Eli Lilly yesterday, speaking specifically about insulin prices.

This is what they want you to know: The spike in insulin pricing was spurred by the Pharmacy Benefits Managers. That in itself wasn't a surprise to me, but there are a few details I want to share that I haven't seen reported before.

This is the story:

4 years ago Eli Lilly got a call from one of the major Health Insurance Benefits Managers saying they were no longer going to carry/cover their insulin anymore. That’s it. They were just dropping them off of the plan. Obviously, Eli Lilly was backed into a corner. It was either negotiate with the Benefits Manager or not have their insulin available to a giant part of the patient population in the US. They negotiated with them and gave them deep rebates on their insulin.

“Deep rebates?” You ask.  “We didn’t see deep rebates.”

Eli Lilly explains the process like this: If they sell a $100 bottle of insulin to Pharmacy Benefits Manager for $40, the Pharmacy then sells the bottle of insulin to us for $100 and the Benefits Manager pockets the $60. They feel validated in doing so because they say they are using that $60 to pass savings onto the consumer by way of lower insurance premiums and the like.

That’s bullshit. If this is true, this is coercion. And it should be (is?) against the law.

Coercion: The practice of persuading someone to do something by using force or threats.

It seems as though to “fix” the problem, insulin companies felt the logical thing to do would be to inflate the list price of insulin so the Pharmacy Benefits Managers FEEL like they are getting a deal. So hypothetically, rather than sell a $100 bottle of insulin for $40, they could sell the PBM’s a $235 bottle of insulin for $100. Then they are making a profit. PBM’s are happy. Eli Lilly is happy.  Who isn’t happy?

Oh. Us.

The insulin companies play down the list price because they say that isn’t what most people pay. Most people enjoy discounts through their insurance company.

Oh, but wait. The new trend with insurance companies are high deductible plans…so a lot of people are paying list price for months and months, most almost the full year, until their deductible is met. Our family of 11 just met our deductible in October. (Thankfully, our pharmacy benefits are not subject to meeting the deductible first. Yet…)

And the wave has just begun to crest. High deductible insurance plans are on the rise, and selling at an alarming rate, because it is all America can afford. (I use the term “afford” loosely.) Last night Doug and I were reviewing our benefits options online, and in bold letters on the website it said, 
(I shuddered when I read it.) I believe we are only seeing the tip of the iceberg when it comes to accessibility to insulin and the like. It’s scary to say the least.

What about Canada?

When I asked why we could walk into a pharmacy in Canada and buy the SAME bottle of insulin for $35 that sells for $235 in the states, I was told it was because the Canadian Government demanded that price.

“How can you send it over there for just $35?” I asked.

“We’re losing money.” They said.

“So you figured, we’ll just have Meri make up the difference?” (I’ll get back to this shortly.)

The conversation then switched over to what I referred to as “generic” insulins coming on the market this coming year. The correct term, I found out, is “Bio-Similar” because it’s more complicated then just producing a pill of some sort. Eli Lilly is coming out with a Bio-Similar of Sanofi’s Lantus in December. Because it is just as complicated to make as the any other insulin, the cost difference isn’t really going to be apparent. Sanofi is retaliating, so to speak, by producing a “Bio-similar” of Eli Lilly’s Humalog. Already, CVS says they won’t cover Lantus anymore, and will only cover the generic, (wait, Bio-Similar) that Lilly is making.

“How is any of this going to help us!?” I asked.

“Compitition can drive down prices. It will be a good thing.”

“But insulin has been completely immune to the competition pricing wars, how am I supposed to believe it will begin now?”

It seems some (one?) insurance companies are already agreeing to put the “Bio-similars” under the generic pricing tier for co-pays. That will help some people. But how long with that last?

My next question was this: “So insurance companies will likely say, ‘We’re not covering Humalog anymore, we are going to use the Bio-Similar Sanofi is producing instead.’ If this happens, and the American Population can’t readily get their hands on Humalog, who is going to pay for Canada’s Humalog?”

Obviously they didn’t answer. It was a rhetorical question anyway.

But really, when I think about it, there is no way they are literally “losing money” on sending insulin to Canada. There HAS to be a benefit, or they wouldn’t send it. (I sent an email asking for clarity. I'll let you know if I receive a response.)

Two days ago Bernie Sanders sent out a bunch of tweets burning (Bern-ing?) insulin companies for their price hikes.

How ridiculous is it that we want to open boarders for us to buy insulin from other countries because other countries have governments to negotiate and we do not.

We need to fix the problem at home.  OUR HEALTHCARE SYSTEM IS BROKEN.

Eli Lilly asked me to point you guys to their assistance program, (link is HERE,) but I feel as though that’s a Band-Aid. Let’s work to fix the problem at the core.

Is anyone working to fix the problem?

Lilly insists they are. They already made a trip to Washington last month bringing light to the problem the Pharmacy Benefits Managers are giving them. The PBM’s are being put under a microscope and I think that can only be a good thing. Hallelujah! I’m thankful Lilly is taking strides to incite change. I encouraged them to be vocal about what they are doing. Our community feels so helpless right now.

We need hope.

Lilly is working with the other insulin companies to eventually meet with government agencies for change. They admit though, as large as they are, they are nothing compared to the insurance industry.

“Then you need allies!” I said. “Work with other manufacturers of life-sustaining drugs. Insulin and other drugs that keep people alive should be in their own class. There should be laws to increase accessibility and protect pricing .”

What would the rule be? Maybe, if a patient starts to die after 48 hours without the drug, it goes into a “Life-saving Drug Class.” And because of this, patients would be protected from price gouging. The more people fighting the better. I think Lilly, Novo and Sanofi are doing themselves a disservice working alone. The bigger the voice, the better chance for change.

And what about us? We want to help! One of the things Lilly brought up is the fact that we need more voices, no one is fighting. He pointed to six years ago when insurance companies began to say they weren’t going to cover one insulin, and patients needed to switch to another insulin, most patients just switched. There was no big fight. (Never mind these families were backed into a corner and most didn’t know they could fight, but whatever…) The Diabetes online community is ready to fight now. We need a place to channel our voices. Where can we do that?

They didn’t have an answer for me, but later we were encouraged to speak to our congressmen and senators. Bernie’s onboard. We need everyone else on board too.

My main message to Eli Lilly yesterday was this: The ramifications of what is happening are more far reaching than they think. They believe people aren’t paying the full list price of insulin, but they are. Many MANY people are, and family’s lives are in ruin because of it. High deductible plans have run rampant the last couple years. Deductibles are just going to get higher. People are suffering, and it is real and far more prevalent than they think. I appreciate their savings plan that offers assistance, but this is too big for that to make the difference we need. Change needs to be wrought now, there is too much at stake for my children, and my friends, for us to let things continue as they are. I shudder to think what the state of our country will be in a few years with health care going in the direction it is. The wave has begun to rise and it’s building steam…what will the crash of that wave bring? I personally know families that can’t afford insulin. Literally they have to skip a mortgage payment to pay for insulin. I personally know people who ration their insulin. They use less than their bodies need because they can’t afford it.

That keeps me up at night.

It is wrong.

I’m sorry that the insulin companies were forced into a corner and had to make hard choices to keep their products in the market. But those choices had consequences…as all choices do.

And in this circumstance, those consequences are dire.

We need change. And we need it now.

(Disclosure: Eli Lilly did not ask me to write a blog post. Every opinion in this piece is mine and mine alone. I think that's pretty obvious, but I thought you should know. Also, when I met with them they bought me a Diet Coke. Disclosure complete.)


  1. Thank you. I worry that too many patients think of corporations as benevolent souls that we don't want to anger. But you are right... we need change, and we have to work in our own best interests. Thanks again.

  2. Thanks Meri - lots of information here.

    Information that Congress needs to know and get together to get some fixes applied to the Affordable(?) Care Act. Insurance is in no way affordable these days.

    CVS forced me to switch from Humalog to Novolog in 2016, and I'll be forced to switch to Basaglar from Lantus in 2017. It is very interesting that the CVS/Caremark website used to allow me to see the actual costs of medicines and how the cost was split between me and CVS, but now that information is hidden and only the co-pay/percentage to be paid by me is now visible. The CVS Pharmacy Benefits Manager is a person that I really want to meet and explain how what they are doing is affecting my life (type 1 D 32 years) and my daughter (type 1 D 10 years).

    Also very interesting that when I called CVS to determine how much I will pay for Basaglar - they have no idea what it will cost, because Basaglar isn't in their systems now. And yet, in less than 60 days, CVS will no longer pay for my life sustaining Lantus. And CVS doesn't understand why I am worried about this lack of information. They suggested I talk to my doctor! My doctor! He doesn't want me to change anything as what I am doing now is working well.

    Diet Coke? It should have been a Coke Zero! :)

  3. One point worth noting: both Novo and Sanofi are based in Europe, where the pricing generally matches Canada (or is lower, and typically zero for T1Ds thanks to social security coverage). Both companies are profitable on that European market and both employ a sale force to push the use of their products, which I assume they wouldn't do if they were losing money on each sale... Less intermediaries, of course...

  4. I especially love how all the companies refer you to their "help" for lowering the cost of test strips and drugs. But guess what? None of these work if you have a Medicare plan.

  5. Everything about this makes my heart hurt for our children, friends and family members who are T1D. Its not fair and the United States pharma and health care is as broken as everything else happening right now in this country. Thanks for this blog post, Meri.

  6. PBM, tell me again, does that stand for Putrid Bowel Movements? You give'um heck Meri!

  7. Eli Lily is now suing the Canadian Government, under NAFTA, for 700 million dollars, saying that they are being prevented from making a profit. This is due to the fact that their patent has not been extended on this and other drugs in Canada.

  8. Thank you so much for writing this. We at T1International are working to rally the troops through our Type 1 Diabetes Access Charter ( You can sign to support access to insulin and other supplies for everyone worldwide. Please feel free to spread the word. We're also working on an advocacy toolkit and would love to have people like you using this to support the fantastic work you are already doing. :) -Elizabeth Rowley, T1International

  9. Type 1 for 56 years. Been on Lilly products except for a short change to Novolog last year to save money. The insulin wouldn't work so I had to switch back to Lilly. Using Humalog pens and Lantus via syringe. The Humalog price for 5 pens was over $1,100 with my out of pocket at $345. I'm on Medicare and my RX provider doesn't see a problem. I searched the internet and found Canadian and discovered I could purchase my Humalog pens much cheaper. For what my out of pocket costs for 5 pens were ($345) I can get (15) pens for that or a few dollars less. It's the same Lilly pen made by Lilly. Same markings but way cheaper. Anyone can purchase them by sending them your doctors prescription and a credit card information. Damn government and Obumer care and greed by pharma. I'll continue to purchase from Canadian Insulin because things won't change in this country until both parties in government are purged of their greed to make themselves richer once elected. The Lantus is also available but the cost difference wasn't that great, but as soon as Lantus increases I'll purchase that from Canadian Insulin as well.

  10. I hate this. Oh how I wish my insurance covered Novolog. It works so much better for me. SO MUCH BETTER. So them telling me I just had to fight it more - I did fight, and lost - because my A1C didn't go up dramatically, (from 6.8 to 7 and hey, they're both "OK" so)..I couldn't prove the need for prior auth - I was just pumping 20 % more insulin and spiking more, and battling more, but hey. That's just what I do as a patient,right? For them to blame others and just spike the cost makes me crazy.

  11. Thanks for this post! It's very helpful. I wish we could go directly to the insulin manufacturers and get a bottle of insulin for $50 or $60 rather than through the PBM's. The PBM's are the ones causing this issue. I understand it's because our insurance companies require us to use specific PBM's, but if we could cut out the middle man, the insulin manufacturers and the families would benefit greatly. How feasible is this? We can go directly to manufacturers for other goods. Why not insulin? It might be cheaper for some families to pay out of pocket than to use their PBM. We need healthy and fair competition in this area! Thoughts?

  12. I totally agree, can we band together and form some sort of non profit insulin buying cooperative with Lilly direct? Will need to research this...anyone else research if you can with FDA rules?

  13. It really is a disaster, I recently changed insurance and have to pay all of my expenses up front and get reimbursed on the back end. When I looked at it, it was costing a significant sum. I wrote about mostly the pump side of the equation, but also touched on the expense of just keeping that bad boy full.


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