Thursday, December 1, 2016

2 Months of Insulin = 4 Bottles & $955.13

Hard for me to share this pic, but in order to for me to encourage others to share their experiences so real change can occur re: affordable insulin for all, I have to do the same. 
Backstory: I'm good - I'm sharing because things have to change when it comes to insulin prices – for people with and without insurance.

Back near the end of October, I realized I'd finally met my yearly deductible and my insulin would now be free. 
My Dr. sent over my RX, and 2 bottles that would have cost $517.75 out of pocket, cost me $0.00. 
BUT 10 days later I realized that the RX was for the wrong amount. 30 units a day, instead of 60. BIG DIFFERENCE. 
My Dr's office called in the proper RX and it was filled on the November 18th. 
4 bottles (plus the two from October,)  until the end of the year.
 I thought I'd have one more "free" refill in December that would be covered 100%.  
 Unfortunately, my insurance says that my next refill is on January 2nd, 2017 - and it’s out of pocket.
 I'm thoroughly confused and I've spoken to my Pharmacist twice about it. But according to my insurance company's D math - that's the date. WTF. 
I'm lucky - I have samples of unopened insulin sitting in my butter compartment, and courtesy of my Dr.

Those samples save me lots of out-of-pocket - having them makes a huge difference in the cash I can actually keep in my pocket – I am blessed that my doctor provides me with them and I know it.
FTR, I will be calling my pharmacy at the end of December to see if they can push another insulin RX through before the end of the year. - fingers crossed, but at least I have lots of back up.
4 bottles of insulin - a two month supply in total, of a drug that literally keeps me alive and that would have cost me $955.13 in total, or $238 per bottle, WITH INSURANCE - had I not met my 2016 deductible thanks to wrist and hand surgery. 
I paid $0.00 because as I've mentioned several times, I've met my yearly deductible.

$238.78 a bottle for fast acting insulin (FTR, the name of the insulin is blacked out because my insurance charges me the same amount of money for Apidra, Lily, and Novalog,) insulins that are no longer on patent, but whose prices have gone up exponentially since 2002. 
$5,730.78 a year out of pocket for insulin, (probably a bit more because my RX pricing goes down the closer I get to my deductible,) for my/our elixir of life. 
I haven't even included test strips, or my pump supplies.

And I’m one of the lucky ones.
1. I have insurance
2. My Endo provides me with generous amounts of life saving samples of the drug (insulin,) that keep me alive, because he’s appalled at what my insurance charges me for insulin. 

I am so grateful to and for him. 

And I am so angry.
Angry that in the United States, insulin prices to go up for a multitude of reasons . 

Here's what I told the Lilly reps when I met with them privately in October to discuss in cost of insulin.
SIDEBAR: Kudos to Lilly for reaching out and meeting with Advocates one on one.
They were the only insulin company to physically meet with me on the east coast and hear my wants and needs - And I appreciate that very much .
They also met with others in the DOC around the country, re: insulin pricing. 

I told the folks from Lilly that I don’t want to demonize pharma or the companies that make insulin and other lifesaving drugs, because I don't.
 I'm not against profit and I know what companies who make insulin have done for nonprofits and people with diabetes.
But things must change because people can’t afford the very drug(s) that keep them/their loved ones alive - with insurance or without. 
And I DON'T CARE WHOSE FAULT IT WAS/IS - I WANT IT FIXED - And I will remember who led the charge to make things right. WE ALL WILL - every single one of us living with diabetes.
I stated that I don’t want hear about the Affordable Care Act, because insulin prices have been going up since 2002 - long before the ACA came to be - stop blaming blaming OBAMA. 
I mentioned that insulins that have long been off-patent, cost most of us more now, then when they were new. 
Insurance companies blame pharma, pharma blames Pharmacy Benefit Managers, PBMs blame everyone else. Toss in restrictive state laws and it becomes a vicious circle of blame. 
There’s enough blame for everyone to go around - and at this point, all parties involved need to stop pointing fingers and make things right.

Insulin Patient Assistance Programs help, but they don’t help enough. 
Those programs  don’t always provide the patient with enough insulin and many don’t qualify for the programs, let alone know these programs exist - see the link to the Diabetesmine link in the article below for all the reasons why. 
Also, these programs take time and paperwork. 
People with diabetes have enough damn paperwork. 
We spend countless hours on the phone with our insurance companies, our pharmacies and our Doctors. 
Nine times out of 10, we are the ones who catch costly mistakes made in our insurance billing - and it takes months to right those costly wrongs. 
And when you need insulin, you need it ASAP and everyday - waiting isn’t an option.
Try explaining to your insurance company about's tile floors that shatter glass insulin bottles, or why you suddenly need more than your normal amount of insulin due to harmones, the flu,a stressful patch at work or within your family, etc. 
They don't get it and they won't pay for it. They make you pay.
Click HERE for a breakdown of various insulin assistant program links/pros and cons. 

A meeting took place in few weeks ago with Pharma and Advocates in D.C came together re: Insulin pricing. 
Unfortunately, I didn't receive an invite to the meeting, but Diabetesmine wrote and excellent post on the meeting, and  I encourage you to read it
It’s comprehensive and does a beautiful and detailed job of explaining the big picture. 

For those of us who didn’t attend the Insulin Roundtable meeting in D.C. and for those who did, there are many ways your voice can be heard. 
For starters, pick up the phone and call your state lawmakers and share your story. 
Use the #DiabetesAccessMatters hashtag on Social Media. 
Call your insulin companies up and in nice, authoritative, calm, and kind voice - tell them your needs and your issues with insulin pricing. 
Get up dates from diabetesPAC  and see what diabetes issues are front in center in DC.
Sign the American Diabetes Association Petition to Stand Up For Affordable Insulin.

It’s easy, free and it can only help.
We all must come together and share our struggles about living with diabetes and the cost of diabetes, in order for change to happen.


Rick Phillips said...


It seems that a knowledgeable doctor might be able to hope you out if they felt you need more of this insulin than you might be using. An increase in prescription amount might cause the insurance company to increase the number of allowable vials per month.

This item has been referred to the TUDiabetes Blog page for the week of November 28, 2016

k2 said...

Thanks Rick!
My Dr did just that re: the RX, unfortunately Insurance company is being stingy.
Like I said, I am incredibly lucky that my doctor also provides me with insulin samples.
I wrote this post because I think it's paramount that people share their stories re: insulin and medication pricing - even if they feel embarrassed.
If we don't share what's going and collectively work todogether, change won't happen.

Sandy said...

Seems if the pharmacy screwed up hey should be the one deleting HUGS two. Title purchase & correcting it to 6 total. But I'm sure u've explored that avenue!! Things have to change!! My reps r going to get sick of seeing my name cuz I'm writing letters all the time!! But seems like another letter to said reps is indicated!! Good luck in ur quest to get it fixed!!

Happy Holidays!!! Santa should start dropping off vialssof insulin!!!