40 Years with Type 1: What I’ve Learned

NOTE: Since this was published, Eli Lilly has announced they’re capping the price of insulin at $35 a month! However, that doens’t change the fact that they’ve been price gouging for years and still should be ashamed of themselves. OK, now carry on!

My goodness. It’s been four years since I’ve posted to this blog.

To the best of my knowledge and recollections, Friday, Feb. 24, 2023, marks the 40^th anniversary of my type 1 diabetes diagnosis. It’s absolutely been a whirlwind and educational on so many levels. Here are a few things I’ve learned over these past 40 years.

1. Yes, I can eat that.
   There’s nothing worse than getting a nice cupcake or ice cream cone and hearing some jackass say “Wait! You have diabetes! Can you eat that?!?!?!?!?!?!” I can eat whatever I want. I take insulin based on the grams of carbs I’m about to eat at any given time. I like to enjoy life’s indulgences, and you and your shitty attitude won’t take that away from me.
2. It’s never been easy; it’s just become my routine.
   I used to have a Snapple with me all the time. I used to eat the same, exact thing for breakfast every day. Today, my routines are a lot less stringent because I have the flexibility of improved technology (read: my insulin pump and CGM) which help keep me alerted to when my blood sugar is dropping. But the routines are important to helping me maintain controlled blood sugars.
3. No, it’s not a beeper!
   Yes, the company that made my insulin pump (Medtronic) thought the design should match late 1980s technology. But for some unknown reason, they haven’t tried to update it too much. I still get the looks and, on occasion, I’ll get an idiotic question like “Is that a beeper?” The answer to that question is usually an icy stare and something along the lines of “No, it’s my pancreas.” That usually shuts them up.
4. T1International is doing amazing work.
   This is an organization I’ve tried to help with advocacy work. Their goal is to lower the cost of insulin worldwide, while not accepting funding from pharmaceutical companies. Their motives are pure and their work is a godsend. I’m thankful for T1International.
5. This isn’t what Dr. Banting imagined.
   When he first isolated insulin over 100 years ago, Dr. Frederick Banting and his team (Doctors Mcleod, Best and Collip) sold their patents to the University of Toronto for $1. “Insulin does not belong to me, it belongs to the world.” His vision was for anyone with diabetes being able to get insulin without being bankrupted. Unfortunately, Eli Lilly, Sanofi and Novo Nordisk had different ideas.
6. I’m thankful for the DOC.
   I’m late to join the diabetes online community, but it’s been a source of strength and support and information and a lot of other things I wish I had over the early tenure of my diagnosis. We’re all there for each other, whether type 1 or type 2. This is a fight for all of us.
7. Co-pay caps aren’t the same as price caps.
   When politicians propose legislation to address the price of insulin, they typically create co-pay caps. However, this doesn’t solve the problem. The people most at danger because of the skyrocketing price of insulin are young people, who, when they turn 26, are forced off their parents’ insurance plans and are forced to get their own insurance. (For some reason, in America, a person’s access to insurance is tied to their job. This is just insane.) Think back to when you were 25 or 26 and in your first job. You got the least expensive insurance plan available because you were probably not making a ton of money at the time. Those inexpensive insurance plans are, usually, high-deductible, high co-pay plans. An insulin co-pay cap won’t help someone who, at the turn of the year, has a $5,000 deductible or a $5,000 co-pay. They have to work through these deductibles and the $5,000 co-pay before they can get to the government-mandated reduced co-pay. The 20-somethings are being forced to ration their insulin, which can have dire effects. (For example, death.) For the ones who don’t die, though, the problems could be down the road. Elevated blood sugar levels can lead to serious long-term health issues, including but not limited to diabetic retinopathy, circulatory issues that can lead to amputations, and more.
8. There are plenty of pols who want to help.
   I’m thankful I got to meet Pennsylvania state Senators Katie Muth and Tim Kearney, and state Reps. Danielle Friel Otten and Mike Zabel (who invited me to speak before the Democratic policy committee on the price-gouging the insulin manufacturers and pharmaceutical benefits managers have been engaged in) back in 2019. I’m thankful for my former state Rep. Todd Stephens, and my current state Rep, Melissa Cerrato, who each spoke with me about this issue.
9. 43 U.S. Senators voted down a co-pay cap.
   They all have at least one thing in common: They are all members of the Republican Party. This is a fact. I’d bet they also all have something else in common. I’d imagine if we were to investigate the political donations for these 43 current and now-former senators, they’ll have all received money from the pharmaceutical industry’s lobbying arm, PhRMA.
10. Insulin shouldn’t be so expensive.
    Eli Lilly, Sanofi and Novo Nordisk should all be charged and found criminally liable because the price of insulin is responsible for the deaths of Alec Smith and Jesse Lutgen and Jeremy Crawford and Jesimya David Sherer and Jada Renee Louis and Josh Wilkerson and Kayla Davis and Stevie Alford and Meaghan Carter and Micah Fischer and Allen Rivas and Antavia Worsham and Shane Patrick Boyle and Monique Gabriel Moses. Look at that list. They should all be alive and thriving today. The high cost of insulin is responsible for their deaths.
11. Three pharma companies are causing serious harm.
    Eli Lilly, Sanofi and Novo Nordisk produce the majority of the insulin on the market worldwide. Since the 1990s they’ve each developed synthetic insulins that are far more stable and are just all-around better products than the original insulin that Dr. Banting and team first isolated in the early 1900s. They’ve also systematically raised their prices in lockstep with one another. The synthetic insulins like Humalog and Novalog that were available and profitable when they were sold for $25 a vial now cost over $300 a vial, even though no changes have been made to the products.
12. Technology is an amazing thing!
    I started on my insulin pump and CGM a little over eight years ago, and they’ve been an absolute game-changer. I’m thankful that the technology can help me, my wife and my son live a far easier (although still challenging at times) life. And because of this technology, I’ve been able to engage my brain to allow me to accurately estimate the number of grams of carbohydrates in some pizza or pasta or, God forbid, Chinese food. So it’s helped make me smarter, too. Or something.
13. I sometimes go months without changing my lancets.
    I’ve developed serious callouses on my fingers because of it. I’ll try to do better in the future.
14. An A1c is just a number.
    I’ve been lucky to have had tight control over my sugars for years. I’ve had A1c results in the low- to mid-6s for a long time. I know a lot of people with diabetes aren’t as lucky as I am. A bad A1c is just a notification that some changes are needed. As people with diabetes we have to be open to adapting what we’re doing in order to improve the overall long-term health we have, now and for the long run.
15. Insulin shouldn’t be so expensive.
    The price has gone up 1200% since 1996. Seriously.
16. Some days just suck.
    Sometimes I wake up and my sugar won’t go down, causing rage bolus after rage bolus. Sometimes my sugar won’t go up, no matter how many carbs I eat and eat and eat. Some days it’s just impossible to stay “in range,” where I like my sugars to be. All you can do is keep relying on what you know and keep breathing. Not every day will be like that. Just get through it.
17. It’s a miracle I made it through my college years.
    I think I tested my blood sugar a total of three times over my four years away at college. It’s an absolutely miracle I made it though those four years without any long-term issues.
18. No, I didn’t get diabetes because I ate too much sugar.
    Stop asking stupid questions and assuming that I got diabetes as a consequence of some behavior.
19. I have hypo “tells.”
    “You’re doing that thing” is one of the ways my wife tells me she knows my sugar is dropping. “Could you check your sugar?” Sometimes I lie about what the sugar reading is, but Meg is super smart, dogged and determined. I’ll tell you more in a minute.
20. Insulin shouldn’t be so expensive.
    Seriously. It’s so obvious the insulin manufacturers, the PBMs and the insurance industry just look at people with diabetes as a commodity. They can keep raising their prices knowing that I’ll have to pay. They can keep reducing their benefits knowing that I’ll still have to pay. It’s unconscionable and they should be ashamed of themselves.
21. My wife has been my hero.
    I mentioned how she knows my tells. Megan, my wife, is a superhero who’s saved me time and time again, and has stuck by me even when hypo me says things that aren’t very nice. (Hypo- and hyperglycemic Brian can be a dick.)
22. Scars, scars and more scars.
    I saw a social account from someone in the DOC that they think of the scars their infusions and CGMs caused as “their constellations.” I liked that. I have constellations all over my body.
23. I don’t know if the cure is “just around the corner.”
    When I was first diagnosed, the Juvenile Diabetes Research Foundation (JDRF) and American Diabetes Association (ADA) used famous diabetic spokespeople like Mary Tyler Moore and Bobby Clarke to give a human face to diabetes. They all spoke about how the cure was “just around the corner.” There are lots of reasons that they don’t say that anymore. Particularly because both the JDRF and ADA are funded by the pharma companies that need people to stay on insulin in order to remain profitable. If a cure were found, it would mean real trouble for Lilly and Sanofi and Novo Nordisk. So it’s in their interest to keep us just sick enough that we need them forever and don’t have an option for a cure. Thankfully, due to stem cell therapy specifically, a cure could come. But don’t expect the JDRF or the ADA to advocate for it anytime soon.
24. Being a sports hobbyist with T1D.
    I’ve been doing Brazilian jiu-jitsu for quite a while now. Every class, my focus has to be juggled between learning new techniques, not getting killed while training, and not getting killed because my blood sugar is dropping. It’s a lot of balls to keep in the air every time I get on the mats. But fortunately, I have great training partners and I’ve tried to explain (with varying degrees of success) my needs.
25. Insulin shouldn’t be so expensive.
    Eli Lilly, Novo Nordisk and Sanofi really should be ashamed of themselves.
26. No, I don’t want to hear about your mother’s complications from diabetes.
    Seriously, don’t be an asshole.
27. We shouldn’t be made to eat chalk.
    My go-to low treatments are Starbursts, Starburst jellybeans, and gummy bears. The biggest reason why I prefer them over the usual hypo treatments? It’s because the glucose tablets taste like artificially flavored chalk which, when taken during a hypo, can cause serious nausea. They taste just as good as the previous sentence would lead you to believe they do. Just terrible.
28. For the longest time, on a wing and a prayer.
    In my early days as a type 1 diabetic, I had a real understanding of what was going on with my body. Then I developed the dreaded “hypoglycemic unawareness,” whereby my sugar would drop and I’d have no idea what was going on. For years I had to test and test and just listen to my body. As I said before, when talking about my college years, it’s a miracle I got through those years without any serous complications. I’m thankful I’ve made it to this milestone.
29. Some would call it a conspiracy.
    Seriously. Eli Lilly, Novo Nordisk, and Sanofi have matched their price increases for yeas and years. I think this could be a good thing for Congress to investigate, don’t you?
30. Insulin shouldn’t be so expensive.
    The high price of insulin leads to deaths every year. These deaths are on the hands of Eli Lilly, Novo Nordisk, and Sanofi.
31. Don’t compare your cat’s diabetes with mine.
    I mean it, don’t be an asshole.
32. You shouldn’t need a prescription to get insulin.
    When the synthetic insulins were developed in the 1990s, pharma companies argued that they should require a prescription, even though the earlier versions of Regular and NPH insulin never required a prescription. It’s another part of the conspiracy for which Eli Lilly, Novo Nordisk, and Sanofi will have to answer someday.
33. No, I don’t want to hear about that time when my blood sugar went low.
    How would you like to hear about the most vulnerable, most embarrassing thing that ever happened to you. Hmmm? How does that sound? No? Then shut up.
34. Yes, maybe I was rude because my blood sugar was high. But, then again, maybe you’re just an asshole.
    Just leaving this one here.
35. Insulin shouldn’t be so expensive.
    I hope the CEOs of Eli Lilly, Novo Nordisk, and Sanofi are brought before Congress and made to testify as to what they’re doing, and then, after they inevitably lie under oath, are charged with perjury.
36. Multi-billion-dollar corporations don’t care about innovation.
    The Big Three have been arguing that the high costs are feeding innovation at their companies. Same with the insulin pump and CGM manufacturers. But innovation comes from the hungry. It comes from lean companies that aren’t price-gouging their customers. As Katie Porter’s white board has shown us, the money these companies are raking in is going to executive salaries. Again, these things don’t feed innovation. They feed stasis.
37. Beware of advocacy groups that are funded by the enemy.
    See my earlier post about how the cure hasn’t been just around the corner.
38. Covid and diabetes: Are we at a tipping point?
    Diabetes diagnosis has skyrocketed as an after-effect of Covid. Will the expansion of the patient base cause greater awareness of the unjust pricing practices?
39. Coupons don’t make up for your price gouging.
    Eli Lilly has been known to offer “coupons” as a way to make their products more affordable. Did I mention already that the price of insulin has gone up 1200% since 1996? And that insulin was profitable when it was sold for $25? I think they can shove their coupons right up their ass.
40. Insulin shouldn’t be so expensive.
    Insulin costs about $4 to manufacture. And its list price is over $300 a vial. And it was originally priced (and profitable) at $25 a vial. Eli Lilly, Sanofi and Novo Nordisk should be ashamed of themselves.

So there you have it. After 40 years with this condition, I feel comfortable telling what I know about type 1 diabetes. This road hasn’t been very straightforward — and won’t be in the future, either. But I’m going to continue amazing myself about the mathematical genius of knowing how many carbs a burrito might contain.

But if I leave you with just one thing, know this: The price of insulin is too damn high, and Eli Lilly, Novo Nordisk, and Sanofi should be ashamed of themselves.