What's All the Fuss About Insulin Price Caps?

Insulin price capping bills have been hot news lately. For those of you that may have seen the headlines, but don't necessarily know exactly what these bills mean for diabetics, this post is for you! A breakdown of what they mean and what else we still need to help address the current problems being faced.

Most of these bills cap insulin at $100. Is that for everyone?

In brief, no. Most bills proposed so far, including the one in Colorado, only cap the copay for individuals with health insurance. Another important factor is that this law is not applicable under all forms of insurance. So, not everyone with insurance may qualify. Plans that are subject to federal regulation may be ineligible for this price cap, such as self-funded employer plans that are regulated under federal ERISA rules and the health insurance plans offered to the armed services (TRICARE), and Medicare. Individuals also cannot visit other states to qualify for capped insulin costs - if you're from Nebraska, for instance, and go to a Coloradan pharmacy, you will not be able to qualify for $100 insulin.

So...Who pays for this?

Contrary to what some have stated, no, taxpayers are not funding this cap. Unfortunately, neither are pharmaceutical companies. Insurance companies will have the cost pushed onto them. Does this mean premiums could rise for individuals? Possibly. However, it's very important to note that insurance companies do not pay full list price for insulin, either. Let's explore more on that below.

How much DO insurance companies spend on insulin when providing it to patients covered under their plans?

Ooh boy... this is a complicated question.  Insulin arrives at the pharmacy either directly from the pharmaceutical company, or through a prescription drug wholesaler who has obtained the drugs from the pharmaceutical company. There are negotiated payments from the wholesaler to the drug company, from the pharmacy to the wholesaler or drug company, from the insurance company to the pharmacy, from the insurance company to the PBM*, and between the pharmacy and the PBM*. Then there are the rebates the drug companies give to the PBM, and the PBM gives a portion of that rebate to the insurance company. This all changes the cost from the time the insulin leaves the manufacturer until it reaches the customer at a retail pharmacy. It means prices can vary wildly for individuals purchasing insulin, but it also means that insulin companies pay far less than list price for a vial of insulin.



What are PBM's?

* PBM = pharmacy benefits managers. Let's talk more about those, shall we? This is where the insulin pricing system gets very complicated, because there are five entities making money from the singular transaction of a customer purchasing their insulin at the pharmacy. PBM's are third party intermediaries who negotiate prices between drug companies and insurance companies. Well, they're supposed to be third party - but this line is getting very blurred. The three largest PBMs are Express Scripts, CVS Caremark and OptumRX. OptumRx is owned by United Healthcare, Cigna recently merged with Express Scripts, and CVS Health acquired Aetna. Kind of crazy, right? PBMs’ stated goal is to reduce costs from pharmaceuticals for the insurance companies while improving health outcomes for the members of the insurance plans. Insurance companies receive rebates from the pharmaceutical companies via the pharmacy benefit managers. PBM's in exchange, take a share of the profits from prescriptions that are sold to members of the insurance plans. PBM's are thus often invisible to consumers and can drive up the costs of prescriptions without consumer awareness. So, to recap, drug companies and wholesalers provide insulin to the pharmacy, and then PBM's help negotiate the sale of insulin from the pharmacy to insurance companies, who then provide it to consumers).

To obtain a preferred spot on a PBM’s formulary, drug companies are often forced to bid against their competition by offering greater and greater rebates. Drug manufacturers are then being forced to maintain or increase pricing as a hedge against discounts and rebates taken by the middlemen  (PBM's) to keep the manufacturer’s products competitive for coverage by health insurers and sale through consumer prescription drug plans. Thus, the individual without insurance, or with a high deductible plan, pays a higher list price on insulin, while the insurance company does not necessarily.

I had to take a break after writing that... it's a LOT of info. 

So who do these bills benefit?

Well, they do a lot of good, absolutely. When I was a student and the only plan my school offered was high deductible, it would have helped a lot to have prices capped at $100, because since my deductible was $4500+, I would have to pay that before my insurance helped to pay. AND... medications such as insulin do not always count towards your deductible! So even spending a crazy amount on the cash price may not do much good. So, they really help individuals with those kind of plans.

Is the total amount you spend on insulin capped at $100?

Sadly no - it's $100 or less per insulin you fill. Most diabetics still need 2 types on insulin a month. Lawmakers in Colorado are actually seeking to close that loophole and clarify the cap language, however, so this could change. 

So if you don't have insurance, you don't qualify for the $100 cap?

Yep, unfortunately that's correct. However, some bills proposed, such as one in Tennessee, would cap prices at $30 for those with health insurance and without. This would be very beneficial!

What else needs to be done?

Many lawmakers who have proposed these bills so far acknowledge that it's a temporary fix. These bills are doing incredible good and helping to ease the pricing burden on consumers, and it was a fast way to help alleviate some of the crisis that many of us who can't afford insulin face. The fact still stands that the majority of people who ration their insulin (26% of diabetics, it's estimated) are not insured, but steps are actively being taken to try to address this on a level that more places responsibility on drug companies. It's a complicated issue with the PBM's for sure... although considering the major insurance companies own the major 3 PBM's, maybe it's a lot more simple that we realize. At any rate, there's still work to be done - so don't take these bills as a sign that we can stop advocating for affordable insulin pricing any time soon.

Update on My Life in 2020!

I've been absolutely horrible with blogging in the past year! This is an absolute shame, as so much has happened and this has been such a big year of transition for me in many aspects of my life. So instead of basing this post on something entirely diabetes related, I figured I'd try to jump back in with just a brief overview of everything that's been going on!

Last year in April, I received my very first continual glucose monitor (CGM), my Dexcom. I have to say that it has absolutely been the singular most life changing tool to help me manage my T1D. It's almost hard to explain both my simultaneous adoration for and dependence on this piece of equipment now that I've enjoyed it for over 10 months. The Dexcom is an insertable sensor that is wearable for 10 days and provides 24-7 around the clock blood sugar readings, alerts when I'm low/high, as well as an app that compiles all of my data into my A1C, blood sugar trends, and allows my doctor to easily download my readings. Honestly the best way I could describe having a Dexcom is like going through the entire day without your phone or watch and having no way to track the time except for physically looking at a clock on the wall or asking the time. It does the trick, but there's no comparison for managing things when you have the availability to access information any time you wish. And I can sleep easier knowing I'll have an alert should I ever go low.

In July, I also transitioned to an insulin pump after MANY years of pushback on my part. The Dexcom made a pump seem more palatable, seeing the ease it provided me, so I was ready to make the jump (much to my doctors delight). I'll definitely add that it was a very expensive year for health care costs for me... but would that change my decision? Not at all. Some things are just worth it, and both of these tools have been so instrumental in helping me manage my health and make diabetes a smaller part of my life. My relationship with my pump, the tubeless Omnipod, has been more a love-hate than my Dexcom. Omnipod is wearable 3 days and I do have to be careful to time things well otherwise my pump will expire during the afternoon at work. I also have to be mindful of placement for my princess parties, meaning my legs take somewhat of a beating. It's a lot easier for your blood sugar to spike if there is a malfunction since you receive little bursts of short acting insulin throughout the day, too. Randomly I've been out and my pump would just malfunction and stop working. This has happened on 3-5 occasions since I got it for reasons I and Omnipod have been unable to figure out (random occlusions), so I have gotten in the habit of always carrying a spare insulin pen with me in my purse. I find that if my blood sugar ever spikes from a pump malfunction, I almost always get sick - I don't really know why a high from a faulty pump makes me feel worse than a high back when I was on MDI's. Or, perhaps the good answer is that my sugars are far better controlled now, so I'm just not used to high levels anymore. Compounding things is the awful adhesive allergy I've developed to the Omnipod - after about 4 months, the adhesive started giving me what I have to assume is contact dermatitis that is extremely itchy, painful, and scars me. It's gotten so bad that my skin as a whole has gotten more sensitive to adhesives, even certain fabrics, that will give me a rash. And I have to use a barrier bandage on top of my pump adhesive, and even that has been wearing off in effectiveness, leaving me scrambling to constantly try out new barrier tapes and skin preps. This has been very difficult for me, but I'm trying to stick it out because I just love the convenience of a tubeless pump. If I can, my next goal is to download a closed loop system, and start combining my pump and CGM to allow an algorithm to essentially control my BG. I've heard it's a bit of a learning curve, but I'm up for the challenge.

I also switched jobs... October brought a lot of new Medicare coverage changes to nursing homes, and it was at that time that I was really itching for a change, regardless. I felt I needed to try to move on and push myself into new roles and areas in which I could learn different skills and develop myself as a clinician and person further. So with a good deal of difficulty, I made the decision to change into a new role as a director of rehabilitation with Legacy Healthcare, and I can honestly say it's been such a healthy and fulfilling change for me. My work life balance is wonderful, I've had wonderful feedback from patients, and I still have so much to learn, but I've already grown exponentially and I feel I can use a lot of my life skills from my owning and operating a business for years in my "adult" job. This ability to blend skills has made me feel a whole lot more synced into life in a whole, instead of splitting my life into two separate worlds, and I am just so thankful for that in every aspect.

There's been a lot of minutia aside from that. I've reached out to a couple of news stations and newspapers to try to advocate more for T1D, but haven't really heard back from anyone. Nonetheless, I've been so encouraged because news about the insulin pricing crisis has exploded in a big way, and people are finally starting to wake up and listen to our cries about not being able to afford this life sustaining drug. It's made me so grateful to know that we are passing laws that can prevent people like me, struggling and vulnerable young adults who are underinsured (amongst so many others), from having to resort to dangerous and difficult methods to obtain insulin - which is good also because unfortunately, there's been a lot of crackdown on "black market" insulin, making it hard to obtain it online for people who need it. I don't even know how I would manage now were I in the same position I was in 3-4 years ago. It's a scary thought, but encouraging to know I had so much support from people who helped me never have to go without it.
I've gotten into cons and cosplay in a big way, and recently gotten a sewing machine to try and start making my own costumes. I've also really delved into my enjoyment for dungeons and dragons, become a full-on anime nerd, and been consistently working out for over a year now!

Aside from that, I've also been a little quiet because I've been trying to advocate for T1D more on social media. And, I've been writing my book! It's been my goal for years to compile this blog into an actual book, and a dream of mine to write one since my diagnosis. I've really been sitting down to focus on cleaning it up now, and then (hopefully) pursuing the next steps to actually taking this goal into fruition. Any and all advice welcome!

I'll end this with saying thank you to everyone that has read this blog over the past few years, and helped with advocating for T1D awareness. It means the world to me. I'll definitely try to be a lot more consistent with blog posts this year, and I'm hoping 2020 lays a lot more groundwork for progress for health care coverage improvements and medication prices in this country.