Browsing the diabetes online universe lately, we’ve seen numerous examples of people experimenting with various types of insulins — some seeking lower-cost options, and others trying out newer insulins or different combinations often when they’ve decided to disconnect from their devices for a change.
We were happy to connect ourselves with fellow type 1 Rob Howe in Texas, the former basketball pro who runs the Diabetics Doing Things podcast. He recently took on a 30-day challenge of disconnecting from his insulin pump to try out a pair of old-school insulins, R and NPH. He was prompted to do this following a discussion in the DOC (Diabetes Online Community) about whether these older brands, available for cheap at Walmart and CVS, are good enough — when someone can’t otherwise afford or access insulin to stay alive.
No one — including Rob — claims that using older insulins is a solution to high insulin prices, or that it’s a long-term solution for PWDs in need.
Rob also makes it clear he’s not advocating that anyone should change their meds without first talking their doctor, but he does want people to know that these more affordable options exist. And that if someone chooses to use them, they can navigate these brands from the 80s and early 90s with due diligence. Rob was kind enough to share his personal experience using them, in hopes of getting that message out more broadly.
DM) Hey Rob, how exactly did you get the idea to start this 30-day challenge that you recorded via YouTube?
RH) Last fall, I was in California with Medtronic Diabetes, and over dinner I asked about the most common complaint of T1D patients. Without hesitation, they told me cost was the most common complaint and that most T1Ds pay around $2,500 per year for pump therapy, and much more in years where they have to purchase a new pump.
All this is on top of insurance premiums, prescription co-pays, primary care visits, endo visits, etc. So I honestly had one too many glasses of wine and said, “What if I did a ‘Super Size Me’-style experiment where I lived completely off over-the-counter insulins for 30 days?” They all collectively gulped but thought it could be beneficial, and the idea stuck with me so I decided to do it in 2018.
This issue of affordability and access has certainly become a hot button lately, hasn’t it?
Yes, 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 hand, 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.
Have you personally faced this issue of questionable access to insulin?
Yes, 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 (an 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.
What did you learn from that experience?
That 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.
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 Walmart 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: you can live well as a T1D on R and NPH insulin from Walmart.
Had you ever used those ‘over-the-counter’ insulins before?
Actually, no. When I was diagnosed, I was on Multiple Daily Injections of Novolog and Lantus, which are the brand name versions of the over-the-counter drugs, but I’d never used them. They’re fairly similar, but have a few nuance differences in terms of timing, peaks, etc., which are supposed to make them more effective.
How were you tracking your results?
Two ways. I’m using the One Drop meter and app, which is really the only bright spot on the over-the-counter treatment option, since it doesn’t require a prescription. I use it normally, so I didn’t have to change anything there.
I’m also tracking my results on the Dexcom G5 (continuous glucose monitor), which is great because I used that to review a 24-hour chart and go through the nuances of my day in a new video posted to my YouTube channel every night during the challenge. The Dexcom is the only part of the challenge that was not over-the-counter, but I’m using it strictly for data collection purposes and I think it adds a lot of value.
So your challenge wrapped up on Feb. 7. What was the experience like?
Honestly, it hasn’t been all that bad. With the exception of a few highs early on, it’s been about what I expected. And while giving syringe injections isn’t super fun, it’s more inconvenient than an actual problem. My hypothesis going into this was I’d be able to live within a .25 variance on my A1c (which was 6.3 before the challenge) and now that I’m a few days into it, I think I’ll be able to pull that off.
What has the response been like from the T1D community?
I’ve been super encouraged by all the messages, comments, tweets and emails I’ve received. It’s amazing to me how different all our treatments of the same disease are, and many people have said how much they’re learning about the over-the-counter treatments. I’ve also heard responses from people who’ve said losing insurance is their worst nightmare, and that seeing me able to live relatively well in the first few days has given them a lot of confidence. I’ve even had some type 2 diabetics email me to ask about my experience with the insulin. It’s a new conversation for me to have with the Diabetes Online Community and I’m enjoying it.
What’s the key takeaway for you? And what do you hope will come out of this?
Here is a video I created on YouTube that recaps my 30-day challenge.
As T1Ds, we have a lot of real dangers to think about on a daily basis, but treatment shouldn’t be one of them. I want T1Ds and T2Ds to know that there are safe treatment options available for them should they lose insurance or come upon financial strain. It’s not the most glamorous treatment, but I hope to show that you can live well for less than $150/month.
Fewer fear-based decisions and more life, is what I hope for my T1D brothers and sisters.
Thank you for sharing this experience, Rob!