Treating Type 1 diabetes without Insurance – The #OverTheCounterT1DChallenge
Editor’s Note: People who take insulin require consistently affordable and predictable sources of insulin at all times. If you or a loved one are struggling to afford or access insulin, click here.
Losing your insurance should never be a death sentence.
A few things to get out of the way really quick:
- I acknowledge that I am very privileged. I have had access to healthcare and financial means that provide me with above average care for my T1D and I’m very grateful for that.
- I made concessions to the typical over the counter experience (like wearing a CGM) in order to provide better data collection for the challenge.
The Cost of Life with T1D
2018 is an interesting time to be a person with Type 1 diabetes. On one hand, we are making significant progress in both research and advocacy, with social media connecting T1Ds across the world like never before. On the other, the cost of prescription insulin has tripled from 2002 – 2013, for no other reason than the pharmaceutical companies can hike the prices, and in the United States, this issue seemingly couldn’t resonate less with lawmakers.
The consequences of this injustice are utterly tragic. Stories are widespread of T1Ds perishing while attempting to ration insulin or trading supplies on the “black market.” Certainly there are programs aimed to provide insulin for those who can’t afford it, but even they have been unable to stop multiple deaths due to the high cost of prescription insulin in the United States.
These deaths break my heart because they could happen to any T1D. We all walk a fine line.
Leaving Insurance Coverage Behind
At the beginning of 2017, I left the comfort zone of my advertising agency job to start my own company. For years I’d wanted to enter an entrepreneurial venture, but always hesitated because the healthcare options in front of me left me with more questions than answers. I stockpiled as much insulin and as many pump supplies as I could, and devoted myself to ensuring that my new venture would be successful enough to get me insurance before I ran out.
I almost didn’t make the insulin stretch. Without the help of a stranger (angel in disguise) from Instagram, I would’ve run out of insulin before my insurance kicked in (there would’ve been a 3-4 week gap).
So why am I telling you this story? Because I wasn’t asking the right questions, and when you are away from the safety net of being able to talk to your doctor about different treatment options you can often miss an opportunity to save your life and treat your T1D for less than $100 USD per month. That’s right. Less than $1500/year, or 5 vials of prescription insulin without insurance.
The first T1D I ever knew commented on an article I shared about the high cost of insulin in late summer 2017 and told me that his doctor had him switch off of his pump and Novolog to treat his T1D with R (regular) and NPH Insulin in order to maintain a stricter regimen so he could remove some variables in pursuit of a lower A1C.
I consider myself a pretty educated T1D, heavily involved in the T1D community with tons of access, and I had never heard of this treatment. When I was diagnosed, I had insurance, so I started on Novolog and Lantus injections. The days of R and NPH as a primary treatment were a thing of the past, out of sight and out of mind.
But my friend told me he got his insulin from Wal-Mart with no prescription and didn’t use insurance. I was skeptical, thinking he must be compromising good control in some way, so I asked him to lunch to explain it to me.
What he told me is what many of you know: it is possible to live well as a T1D on R and NPS insulin from Wal-Mart.
But as I scoured the internet, I kept running into more and more articles about the high cost of prescription insulin, and almost no content focused on the options patients have when cost becomes prohibitive. So I decided to try to change that.
At a dinner with Medtronic Diabetes, after maybe one too many glasses of wine, I asked my team what their most common customer complaint was, to which they all responded without hesitation: “Cost. Type 1 diabetes treatment is expensive and it is a heavy burden on many of our patients.”
So I spoke my idea into existence. I told them I was going to put my insurance card and pump away for 30 days, and live completely over the counter, in a “super-size me” style documentary experience. I’d make a video every day and document the results, so if anyone found themselves in a pinch financially or without insurance, they’d have a step by step guide of my experience making the switch.
I’m not sure if they thought I was serious, and maybe neither did I. But on January 8th, 2018 I started the #overthecounterT1Dchallenge with this video:
31 videos later I knew the truth.
My primary finding: you do not have to die if you lose your insurance or cannot afford prescription insulin.
In fact, you can live the same lifestyle with a few adjustments.
I won’t lie, R and NPH have a ton of downsides and imperfections. They are about as invasive and inconvenient as T1D gets. In fact, from my perspective, the cost of the treatment was the only pro in my pros and cons list. But in a back-against-the-wall scenario, even for an extended period of time, you can live on over the counter insulin.
Here are the products I used on the #overthecounterT1Dchallenge:
- Novolin R Insulin – $25 per vial (I used 1 full vial in the 30 days)
- Novolin N Insulin – $25 per vial (I used 1 full vial in the 30 days)
- Test Strips from One Drop today – $39 per month for unlimited strips (I used over 250 in the 30 days, because R and NPH require more attention due to bouncing between highs and lows)
- ReliOn Syringes – $12 per box of 100 (I used ~150)
I have to mention that prior to starting this challenge I had specific recommendations from a CDE, and during the challenge I had constant contact with a CDE through the OneDrop app, neither of which required insurance. One of the CDEs pointed me to this article from BootCamp for Betics, which walks you through the specific steps for switching from pump therapy or prescription injections to R and NPH as well as other over the counter treatments.
So … what?
As always, knowing is only half the battle. In order for this to have any impact whatsoever, we need to spread awareness of the low-cost treatment options for T1D. We owe it to ourselves and our brothers and sisters to ask the hard questions, starting with “What would I do if I couldn’t afford prescription insulin tomorrow?” These questions are uncomfortable, but by addressing what can be done, I believe we can save the lives of T1Ds who are at the end of their insulin supply and don’t have anywhere to turn. It’s my hope that by asking these tough questions, we won’t have to read anymore stories about T1Ds who perish because they can’t afford the one thing they need most to survive.
Support #insulin4all, and let’s take active steps in fighting for global insulin reform – because everyone deserves access to better, newer, and safer insulins. Hopefully we can build a future in which we won’t have to ask what are options are if we can’t afford the medications our doctors prescribe.