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BootCamp for Betics Blog

The insulin price fiasco is even worse than we thought.

8/28/2016

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Hell yes, insulin prices are skyrocketing. And the trajectory is so much steeper than we thought. Last week's news made a really amazing effort to shed light on the insane costs of being diabetic, and, as a result of last week's reports, a bunch of change.org petitions to lower insulin prices popped up and got passed around on Facebook and other social media.


Which is awesome. It’s really nice to see people caring about insulin prices.


The JAMA study's data from which the news reports got their numbers is entirely correct and you should definitely read it if you get an opportunity (It's a study about type 2 diabetics. It didn't include type 1s). But I am concerned that the news reports have not clearly explained the meaning of JAMA's figures in a way that is relevant to the diabetics who actually take insulin (and their loved ones). So I'd like to set the record straight and help clarify the figures.


Why?


Well, I figure if you're gonna be pissed off on behalf of the diabetic(s) you love, I want you to be pissed off based on a more clear interpretation of the data.


The actual average price of insulin per insulin-dependent type 2 diabetic in 2013 was $2661.52, not $736.09, as many believe based on last week's news reports.
​

Wait, WHAT? Why am I saying the average yearly price of insulin in 2013 was $2661.52 and all the other news articles are saying it was $736.09?


Let me explain.


This JAMA study tells us that insulin cost an average of $736.09 per type 2 diabetic per year in 2013, This average cost is distributed across ALL diabetics, whether they’re taking insulin or not! But, only 29.2% of Type 2 diabetics actually take insulin. Do you know what this means? 


It means that 29.2% of type 2 diabetics are absorbing 100% of the insulin cost.


Look, if you're an insulin-dependent type 2 diabetic with a kick-ass health plan, your insurance company might absorb a good portion of this cost on your behalf. But, if you don't have a health plan, or if you have a high deductible before drug coverage kicks in, or if you pay a high coinsurance percentage, or if you're stuck in the donut hole, you might become desperate enough to start thinking about other less healthful options, such as rationing insulin by skipping doses (yes, this is actually happening, and it really shouldn't be) or using the cheaper but less effective insulins.


So sure, the study had numbers in it. And the numbers were correct. But the study didn't calculate the values that are most relevant to people who are going broke thanks to their insulin bill (which wasn't the purpose of the study anyway, so don't be mad at the researchers. They didn't do anything wrong).


So, here’s what’s actually relevant to us: The average cost of insulin for an insulin-dependent type 2 diabetic increased from $742.14 in 2002 to $2661.52 in 2013.


And guess what else. Prices have increased a LOT since 2013. Based on the published cash prices for insulin on GoodRX.com and using the JAMA study’s average figures for yearly insulin consumption in mL, an insulin-dependent diabetic on analog insulin (the good stuff that actually works) can expect their “average” insulin costs in 2016 to be anywhere between $2662 and $5459 or more per year. If you don't have a good health plan to cover these costs, you are screwed.


Here’s some extra math, for those of you who like math:
​

The JAMA study indicates that in 2002, the average price of insulin was $4.34 per mL, and that in 2013, the average price of insulin was $12.92 per mL. The study also indicates that in 2002, insulin-dependent type 2 diabetics took an average of 171mL  per year and in 2013, insulin-dependent type 2 diabetics took an average of 206 mL per year.


So, if you care about a diabetic, and if you've been getting all pissed off about the price of insulin increasing but you haven't yet fully grasped how ridiculous the price increases are, just do the math yourself using the figures above, and then join me in my full blown rage, or cry, or shout expletives, or call someone and cry, or whatever.

​
And, if you haven't done so yet, go sign one of those change.org petitions! Because for pete's sake, we 'betics can't afford these disgusting insulin price shenanigans.
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Insurers Heavily Restrict Diabetes Coverage in 2017

8/17/2016

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Dear Betics,
​

Nothing makes me madder than having to arduously fight the insurance bureaucracy to stay alive. And the NPR report I read today has my heart racing with indignant rage on behalf of diabetics everywhere who KNOW what a struggle it is to cry, beg and plead with the insurance company in an effort to coerce them into doing the very thing they’re charged with doing: keeping you alive and well.

If you have diabetes, you probably (like me) burst into tears at least three times per year after ending a call with a customer service representative who insists your life-saving diabetes treatment isn’t covered by insurance. Before you continue reading, get your game face on, because this is going to piss you off.

In 2017, diabetics who get their meds through CVS Caremark or Express Scripts are in for some blood boiling adjustments to diabetes (and other) drug coverage.

NPR’s got the full story, and you can read it here. For my part, I’ll summarize the CVS diabetes drug denial list for 2017 (because it’s bigger than the Express Scripts list), and discuss why denying people the drugs they need to stay alive is so awful.

Both companies are choosing to remove brand name drugs from their formulary and instead are choosing to cover generic versions. Fine. We’re all accustomed to that. That isn’t news. Substituting generic for brand name happens ALL the time. I’m not upset about that.

Here’s what I AM upset about: the prescription insurers are choosing to replace some of your current meds with biosimilar medications (this happens from time to time with all insurers, but not to this degree). Replacing a drug with a biosimilar is NOT the same thing as replacing a brand name drug with a generic drug that has the exact same ingredients. In this particular context, biosimilar means, “Drugs that are designed to do the same thing, mostly, but each drug is actually different from the other, and they each have their own interesting side effects, and there are some people who can tolerate a certain drug but CAN’T tolerate its biosimilar competitor drug(s).”

To see the full list of formulary changes for CVS Caremark and Express Scripts, visit these sites:
​(Consider taking a xanax before you click, though. Oh, wait. That isn't covered.)
​

CVS Caremark Full List of Formulary Changes
Express Scripts Full List of Formulary Changes
​

For the purpose of this article, I’m going to use CVS Caremark as my example. Below is a table of CVS Caremark’s diabetes treatment changes and what should have been considered (see notes/comments) before implementing the restrictions.

Med(s) that won’t be covered in 2017

The substitution med(s)

Why this is bad

NESINA

ONGLYZA

KAZANO

KOMBIGLYZE XR

OSENI

JANUVIA

TRADJENTA

JANUMET

JENTADUETO

Sometimes, people have bad reactions to drugs. When this happens, physicians often prescribe an alternative biosimilar medication. Sometimes, the alternative medication works! But, because of these restrictions, alternative options aren’t available, and the patient is forced to choose between suffering life-altering side effects or just not taking the medication at all. Either way, health suffers.

BYDUREON and BYETTA

TRULICITY or VICTOZA

According to the FDA, Victoza/Trulicity can cause Thyroid C-Cell tumors and pancreatitis.

According to the FDA, Byetta/Bydureon can cause kidney problems and pancreatitis.

These are two biosimilar drugs with VERY different side effects.

So, if I need this type of med and I have pre-existing kidney problems, I’d probably choose the Victoza.

But, if I need this type of med and I have pre-existing thyroid issues, I’d probably choose the Byetta.

Unfortunately, if I have CVS Caremark as my prescription insurer, I don’t have a choice.

INVOKANA

INVOKAMET

FARXIGA

JARDIANCE

XIGDUO XR

The jury’s still out on this type of drug and I have mixed feelings about it, so I’m not going to comment.

APIDRA

HUMALOG

HUMALOG 50/50 HUMALOG 75/25

HUMULIN 70/30

HUMULIN N

HUMULIN R

LANTUS AND

TOUJEO

NOVOLOG,

NOVOLOG 70/30

NOVOLIN 70/30

NOVOLIN N

NOVOLIN R

BASAGLAR

LEVEMIR

TRESIBA

Note 1: While Humalog, in most people, can be reasonably well replaced with Novolog, there are other alarming eliminations, here. First, the chart published by CVS Caremark suggests replacing Humalog 50/50 and Humalog mix 75/25 with Novolog 70/30. Last time I checked, 50/50 is 50% intermediate-acting, and 50% short-acting. Not sure how replacing a 50/50 split with a “biosimilar” 70/30 split is going to result in not completely destroying the blood sugar of the person who switches from 50/50 to 70/30. Likewise, CVS Caremark suggests replacing Humalog 75/25 with Novolog 70/30. While switching to 70/30 from 75/25 probably won’t be as dangerous to a diabetic as the 50/50 to 70/30 switch, it still sounds mighty inconvenient. These insulin mixes are mainly prescribed to people who are non-compliant, disabled OR simply unable to pay close attention to their diabetes because they are being cared for by a third party. In short, if someone is on an insulin mix, they’re already in a very high risk group. Why pick on them?

Note 2: Eli Lilly has created an insulin similar to Sanofi’s Lantus (called Basaglar, which has been approved by the FDA as a “follow on” but is not yet available in the US), but there’s no way I want to try it until a few other brave souls have put it to the test. Not everyone likes trying the newest drug on the market, and even though it’s a wanna-be Lantus (the first ever, in fact), I’m not willing to be a guinea pig.

Note 3: I personally hate Levemir because it doesn’t work for me. It’s supposed to work for 24 hours like Lantus, but I discovered that I had to split the once-daily Levemir dose into 2 doses, 12 hours apart, because Levemir just didn’t last the full 24 hours for me. Other people have the opposite experience (where Levemir lasts 24 hours but they have to split their Lantus dose).

My point is, different drugs work differently for different people. And some of the drugs this prescription insurer has selected to cover AREN’T going to work for some people.

ALL DIABETES TEST STRIPS except for the ONETOUCH brand

ONE TOUCH

I use the Contour Next blood sugar meter, which requires the Contour Next test strips. Does this meter have a bunch of awesome features? No. Does it have a touch screen? No. Is it pretty or fancy? No. But. Do you know what the Contour Next blood sugar meter does? It integrates with my insulin pump! Whenever I test my blood sugar, my Contour Next transmits my blood sugar reading wirelessly to my insulin pump. Then, my insulin pump tells me how much insulin to take. AND the insulin pump logs my blood sugar and it logs how much insulin I took, so that my doctor can analyze my blood sugars and my insulin doses at my quarterly appointment. Isn’t that nice? This meter has seriously improved my life. Before I had this meter, I had to try and remember to write down my blood sugars, but I often forgot my log book, and then I tried to use a blood sugar app, but then I’d lose track of my phone, etc. My blood sugars have improved as a result of using this meter/pump combination and my doctors have stopped yelling at me for not recording my blood sugars. It’s been awesome! If I can’t use my Contour Next anymore, what am I supposed to do? OneTouch products don’t integrate with my pump.

Also, my insulin pump/meter experience is not the same as everyone else’s. I have friends who SWEAR by the Omnipod insulin pump. Dude. You can’t use an Omnipod meter with OneTouch test strips. And the Omnipod meter also doubles as the remote control for the Omnipod pump. So I guess Omnipod users who have Caremark won’t be able to use their insulin pump anymore.

(In a relatedly dickish move, United Healthcare decided to stop covering all insulin pumps except the Medtronic pump, which is *really* going to destroy some people’s lives. More on that in another article.)

Look, I see biosimilars as treatment options, and I hope I will always be able to get my hands on the best drugs & treatments that will help me, as an individual, control my diabetes. I want options. I NEED options. And so does every other diabetic.

Unfortunately, the insurers see biosimilars as an opportunity to negotiate lower drug prices, which I can certainly understand (diabetes meds are hella expensive), and I *know* there are factors involved in these decisions that I’m not privy to, but, as a patient on the receiving end of these new restrictions, I feel like I’m being stuffed into a regimented care plan box, which will inevitably result in an uncomfortable and less healthful life. I need the freedom to use the treatment options my doctor and I decide will keep me alive for as long as possible. I don’t know how to solve the myriad of problems insurers face with regard to ever increasing drug prices. But I want prescription insurers to realize that what they’ve devised as a viable solution to THEIR problem has created a BIG problem for ME. And I implore prescription insurers to actually care about this.

Look, you guys. It’s an obnoxious battle to try and keep my blood sugar in target range every single hour of every single day, especially when I’m trying to eat healthy, exercise regularly and still maintain a flat baseline. I use three different pieces of medical equipment to stay alive. I use the test strips and insulin that work best for me, as an individual. And I *really* depend on this stuff to stay healthy. It’s difficult, but I’m not gonna complain, because at least I’m lucky enough to be alive. But. I can’t understand why I constantly have to fight my insurance company for the stuff that keeps me alive. This shit wears me down. Makes a diabetic want to just hold up her hands and say, “I give up.”

So, to CVS Caremark and Express Scripts, for restricting diabetes treatment options, and to United Healthcare, for restricting insulin pump options, and to the drug companies who charge way more for drugs in the US than they charge anyone else, I have a challenge for you. I’d like to invite you to spend a few days with me (or better yet, sign up for my Diabetes Education Course) so that you can better understand how potentially devastating your new 2017 restrictions are.

With as much diabetic love as I can muster in this dire situation,
Kara
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