Insulin Access Issues Affect People From All Walks of Life – A Post by Laura Nally, MD

This post originally appeared on the T1International blog on March 16, 2020. I wanted to share it here today because it’s a stark reminder that insulin access issues affect all kinds of people: those who do and do not have health insurance, stable jobs, and so forth. Thank you to Dr. Laura Nally for sharing her story about what happened when she went without insulin for a mere four hours, illustrating the serious nature of access to insulin for all.

In 1990, when I was 6 years old, I was diagnosed with insulin dependent type 1 diabetes. In 1996, I could purchase 1 vial of insulin for about $20 without insurance. Today, a vial of the same insulin that I have taken for 24 years costs somewhere between $250 and $400 in the United States. There is no logical or scientific reason for this. To put things in perspective, in Canada, the same insulin costs about 1/10th of the price.

I am a physician and I have health insurance. However, just because I have health insurance does not mean that I can always access affordable insulin when I need it. Recently, at my cousin’s wedding, my insulin pump became disconnected from my body. It had probably become disconnected when I went to the bathroom 2 hours earlier. It was an accident, and this sometimes happens when you sweat a lot. This honest mistake led to a serious medical problem.

I called my doctor immediately to get a prescription sent to the nearest pharmacy. When I went to the pharmacy, I wasn’t due for a refill, so I paid $369 out of pocket for 1 vial of insulin. I didn’t have a choice. I took a large dose of insulin immediately. Unfortunately, it can take up to 3 hours for insulin to work, and in the meantime, I became very sick.

Four hours after I had become disconnected from my insulin pump, I was vomiting on the bathroom floor at the wedding and falling asleep between vomiting episodes. I was confused, my thoughts were clouded, and I could not take care of myself. All of this happened after going just 4 HOURS without insulin!

Why was I so sick? I was starting to develop diabetic ketoacidosis, a life-threatening condition that prevented me from being able to think clearly. I see patients with diabetic ketoacidosis in the hospital frequently; they may be disoriented, confused, combative, sleepy, and even comatose. Even though I was able to recognize the early signs and symptoms, I still became extremely sick within 4 hours. It took me 12 hours to fully recover from this episode. My family woke me up to check my blood sugars, drink water, and take insulin every 2-3 hours overnight.

I am lucky because I knew what to do to treat this condition and that my family was able to help me.

did not have time to call insulin manufacturers and ask for support.

did not have time to figure out how to get a coupon for my insulin online, like many have proposed is a solution.

did not have time to learn how to use Wal-Mart brand insulins, which act completely differently than the rapid acting insulins that I currently take. THIS WOULD HAVE BEEN FAR TOO DANGEROUS.

did not have time to worry about how much I could afford to spend on insulin.

We don’t have time to argue over this issue. We need affordable insulin now. It’s a matter of life and death.

Diabetes does not selectively affect individuals who can afford insulin and have health insurance; it affects people coming from all walks of life, regardless of socioeconomic status.

Many people cannot relate to what it would be like to have your life depend on whether or not you can afford or access a medication. In all forms of type 1 diabetes and some forms of type 2 diabetes, you may be able to survive without insulin for as long as you can survive without water, which could be a few days or up to 1 week. Most people need a minimum of 3-4 vials of insulin per month. If we estimate that 1 vial of insulin can costs $300 without insurance, that would mean out of pocket insulin costs were $900-1200 each month for insulin.

What if a 1 month supply of water cost $900-$1200? Could you survive? For how long? What if you could only receive water once per month, and the amount depended on how much water your doctor thought you needed. What if the doctor didn’t estimate your water needs correctly?

What if there were restrictions on how much water you could receive in a given month by the company that supplies the water? Let’s say you ran out of water too soon and became extremely thirsty, but when you try to get more, you’re turned away because the water you were given last month should have lasted you longer. You will have to wait until next week to get your water. But can you survive until then?

What if the company you get your water from decided to verify that you REALLY need that much water, like insurance companies do with prior authorizations. They will contact your doctor to submit extra paperwork and if the larger supply of water is approved, you will know within 2-3 days. What do you do until then?

Diabetes does not selectively affect individuals who can afford insulin and have health insurance; it affects people coming from all walks of life, regardless of socioeconomic status. It affects our children, our parents and grandparents, our brothers and sisters, our friends and coworkers. No one who is in urgent need of insulin should be turned away from the pharmacy without insulin or the diabetes supplies that they need.

All I Want for Christmas is…Affordable Insulin

So…remember when I said I didn’t have time to rewrite a classic Christmas carol this year? (Please refer to last week’s post.)

Well, that was before inspiration struck.

Regular readers of this blog know that the cost of insulin has been on my mind a lot this year…so when I was thinking about that and a certain Mariah Carey song came on, I knew what had to be done.

Without further ado, please enjoy my rendition of Mariah Carey’s “All I Want for Christmas is You”…with the words changed with insulin affordability in mind. Do read/sing along to this – break out your best diva voice!

I think Nick Jonas should volunteer to sing my new version of this song…

I don’t want a lot for Christmas
There is just one thing I need
I don’t care about the presents
Underneath the Christmas tree
I just want insulin costs to go down
More than you could ever know
People with T1D deserve this win,
All I want for Christmas is affordable insulin

I don’t want a lot for Christmas
There is just one thing I need (and all PWD)
Don’t care about the presents
Underneath the Christmas tree
We don’t need to pay so much
To evil big Pharma (I)
Eli Lilly won’t make me happy
With generic insulin on Christmas day

I just want insulin costs to go down (ooh)
More than you could ever know (ooh)
People with T1D deserve this win,
All I want for Christmas is affordable insulin (yeah, baby)

I won’t ask for much this Christmas
I won’t even wish for diabetes to go (and I)
I just don’t wanna keep on waiting
For those prices to go low

I won’t make a complaint and send it
To Amazon for their new insulin – (it’s lame)
I won’t even roll my eyes
When I file another insurance claim

‘Cause I just want insulin costs right (ooh)
I’m tired of putting up this fight (ooh)
What more can I do
Oh, Baby all I want for Christmas is affordable insulin (ooh, baby)

All the pods are pumping
So much insulin everywhere
And the sounds of disgust over
Insulin prices fill the air (oh)

And everyone is surmising (oh, yeah)
Why are those prices rising?
Santa won’t you bring me (yeah)
What I really need (oh)
Won’t you please make insulin affordable quickly

I don’t want a lot for Christmas
This is all I’m asking for (I)
I just want big Pharma to
Listen to us all, for sure

I just want insulin for all (ooh)
More than you could ever know (ooh)
Help PWD win
Baby, all we want for Christmas is affordable insulin (yeah, baby)

All I want for Christmas is affordable insulin, baby
All I want for Christmas is affordable insulin, baby
All I want for Christmas is affordable insulin, baby
All I want for Christmas is affordable insulin, baby
All I want for Christmas is affordable insulin, baby