Friday, May 12, 2017


On Wednesday night I came home late and to the news that Lilly had announced price increases for a multitude of drugs, including insulin (7.8% price increase,) and I was pissed. I emailed Lilly at midnight, spoke with them yesterday afternoon for 38 minutes. 
Marinated and thought about what to write. 
Every single person I know living with diabetes struggles to pay for their disease - even those with the best insurance. And I'm angry that the price to keep us alive continues to go up.
And I'm angry about other things too. 
But this isn't just a Lilly problem, other insulin companies have will be increasing their prices in the very near future and have publicly stated as such. 

I'm angry that people with diabetes are once again being hit by the financial implications of a disease we never chose or wanted. A disease I am doing my absolute best to live with - and hopefully helping others to do the same.

I’m angry because I’ve lost so many people I love in my bio and DOC family to diabetes.

I’m angry because high ranking White House official publicly perpetuated diabetes myths and stereotypes by blaming people living with diabetes - and used us as an excuse when it came to the return of pre-existing conditions clauses and high risk pools.. 

I'm angry that my friend with three children with diabetes was driven by tears of anger and frustration to write THIS

For pete's sake we can buy the same insulin in Canada for under 40 dollars.

I'm angry at health insurance companies, PBMs, and drug companies blaming one another while continuing to take our money.  

Im angry that all three can hike our prices just because they can and continually point the fingers at one another. As far as I'm concerned, they're all at fault and it must stop. 

And quite frankly, I’m angry that whatever good that's come out of the past 5 years of Lilly’s engaging with the DOC, up to and including the insulin access workshop three weeks ago, Monday's announcement of Lilly and other companies cross industry participation in Express Scripts GoodRX program, may have thrown under the bus - as were the Diabetes Advocates who attended the Insulin Access Workshop - and that makes me LIVID.
I'm proud of the communication channels that have been opened and I don't want those channels to be closed - but the announcement of yet another price increase that will impact millions, means those channel are clogged and in need of a good cleaning.

My anger and frustrations aren't focused on the PR/Patient Engagement side - I'm angry, you're angry, the PR team knows it.

The PR team aren't the Decision Makers at Lilly and their job became a lot harder this week and they have a lot of muck to clean up.

Sidebar: Years ago, I worked for a Corporate 300 technology company in Communications.  
My department was never a privy to price increases - that info was handled by Investor Relations,  Finance and Legal - they never divulged price hikes because of insider trading and investor fraud. Those of us in Corp Com and PR found out about the price hikes when they sent out their own press releases on the subject. I believe the same rules apply to Pharma.

No, my anger is directed at the Lilly Kingfishes. CEO's BOD, the Financial, Legal, and Investor Relations departments. And the Investors.

These are the folks who are involved in price increases. 
These are the folks who decided that now was a good time, a time when people in the United States are dying because they can’t afford insulin, and during a shit show happening in the United States with the implications of AHCA, the destruction of ACA, causing very real fears and emotions to run high. 
These are the folks decided that May 2017 was a great time increase prices.


And there's a lot to learn from this classic example of a billion dollar corp’s right hand 
( CEO, Board of Directors, Legal, Finance, Investor Relations) most likely not knowing what the left hand (PR, Social Media, Patient Engagement,) is doing - and most likely not caring. 

FTR and for those who have asked, I don’t believe that the Insulin Access Workshop was a PR stunt  - though it had the potential to generate some good PR and programs. 

Same goes for Lilly re: announcing their participation in the

Seriously, what company would announce that they were participating in a program (including Sanofi, and Novo,) that reduced the price of insulins and other medications on the list by 34% price decrease for under insured/ uninsured - and then announce a price increase? 
That's CRAZY. 

Clearly there was some MAJOR communication issues between departments. 

Sidebar: Do I think that price of insulin with the 34% decrease in the GoodRX program still makes insulin too expensive? 

You bet I do. But between you and me and maybe it was wishful thinking, it was a good first step.
And I was hoping that it would force PBMs and Health Insurance companies to make the the next move. 
And now the positive that could be, has been dimmed because of Wednesday article re: the insulin price increase. 

Bottom line. People are awake and angry. The price of insulin is too damn high. 
Lilly’s head honchos, and their Financial, Legal, Investor Relations teams, need to get their heads out of their investors asses and hold the people who actually use their products in higher esteem - they need to put us first - or more realistically, they need to put investors and customers on the same playing field, instead of one side always being the victor. 

Those same people also need to educate themselves on what's going on with the patient engagement side of their company. 

Lilly, Sanofi, Novo Nordisk, investors need to make noise re: the unrealistic price hikes - peoples lives and well being are at stake - and they are either part of the solution or part of the problem.
Also, this isn't just an an insulin issue - if it's happening with all our medications, it's happing with investor meds too. 
They have the power to make real change - and we will be watching.

Right now, Lilly needs step up because the spotlight is glaring on them - things are only going to get hotter. 
People are angry - the price of insulin needs to go down, and Lilly, Novo Nordisk, and Sanofi need to make it right.

And the conversations need to continue - no holds barred.

Sidebar: Next time anyone feels the need to question diabetes advocates who sit at the table and advocate with industry face to face, remember this. 
EVERY SINGLE DIABETES ADVOCATE I KNOW works their asses off to advocate for change - it's 24X7, it's time away from our families, from our jobs, from our lives.
It's mostly thankless but we persist through good times and the bad, because we want to help people living with diabetes - and we're not going to stop. 

1 comment:

Rick Phillips said...


I am upset as well. You named them all except one. I am upset with me and my fellow T1's. For too long as a community we have chased incremental changes in pump technology forgetting the one basic thing. If we cannot afford the insulin that is in the pump the whole system collapses. The most important thing we can do is call our HR office's and tell them insulin costs too much. If we are using the ACA we should write our plan administrators and tell them the same. If we have medicare and use the prescription benefit we need to write the pharmacy provider and tell them the cost of insulin costs too much. And if we pay cash at the retail counter we need to tell our pharmacist it costs too much.

Fot too long we have been quite about the cost of insulin. Now we need to tell everyone.