People are dying from insulin rationing – even tv dramas are talking about it


#1

Tonight, at 8 p.m. PST, Fox’s TV drama The Resident took on the timely subject matter of insulin rationing. In season 2’s episode 2, “The Prince & The Pauper,” we meet a 13-year-old girl named Abby who has Type 1 diabetes and is fighting for her life. According to the script, Abby’s mother couldn’t pay the $2,000 per month out-of-pocket cost for her daughter’s diabetes supplies, despite working two jobs. Because of this, Abby starts rationing her insulin until she goes into DKA (diabetic ketoacidosis). DKA occurs when the body does not receive enough insulin to break down glucose, so it starts to break down fat as fuel. Ketones are then released into the body.

Stanford endocrinologist Marina Basina describes DKA as “the most serious and life-threatening diabetes emergency. It’s characterized by severe insulin deficiency, severe hyperglycemia (high blood sugars) and increased production of counter-regulatory hormones such as glucagon, adrenaline, cortisol and growth hormone.”

“If unrecognized and untreated,” says Basina, “DKA can lead to severe dehydration, acid accumulation, altered mentation, coma and death.”

Writer of the episode and executive producer of The Resident , Andrew Chapman, who also has Type 1 diabetes, explains, “We aren’t advocacy television, but we have to bring to light what is happening with insulin rationing. People need to know that this drug [insulin] isn’t about curing a disease, it is just about keeping people normal and alive, yet it’s out of reach.”

In The Resident , Abby is on a ventilator, IV and insulin drip; it’s uncertain if she’ll make it. While TV dramas have the propensity to be — well, dramatic — the details of Abby’s story are not only accurate but also more common than one might believe.

In a poll taken in the Beyond Type 1 App with more than 500 people with Type 1 diabetes, nearly 30% said they rationed insulin because they couldn’t afford it. Another 6% said they switched to a non-prescription, over-the-counter insulin, which is cheaper but less effective in controlling blood sugars.

In a story that has been making headlines since June of last year, Alec Smith from Minnesota didn’t qualify to stay on his mother’s health insurance when he turned 26 years old. As a manager of a Mongolian BBQ restaurant he brought in roughly $2,200 a month. This would have been a livable wage except that he also had the chronic illness of Type 1 diabetes. His monthly supplies cost him $1,300, more than half of his paycheck.

According to his mother, Nicole Smith-Holt, they shopped around for insurance plans, but Alec couldn’t afford any of them with the high deductibles. He decided to pay out-of-pocket, being the cheapest option, until he could save enough for a better insurance policy.

“That was the plan,” Smith-Holt said, “but he was never able to even make his first purchase. He didn’t have the $1,300 the first time he went to the pharmacy to pick up his refill. He was planning on coming back in a couple days because he was rationing his insulin with whatever he had left to hopefully get him through until then. He didn’t make it that long.”

Twenty-seven days after losing insurance, Alec died.

Like Abby, he had the classic symptoms of DKA due to rationing his insulin supply. Alec had put himself on a low-carb diet that required less insulin, but despite that, was experiencing shortness of breath, abdominal pain, blurry vision and vomiting.

According to Dr. Silvio Inzucchi from the Yale Diabetes Center, when someone with Type 1 diabetes doesn’t receive insulin, “they’ll begin to fall ill within 12-24 hours after last insulin injection, depending on its duration of effect. Within 24-48 hours they’ll be in DKA. Beyond that, mortal outcomes would likely occur within days to perhaps a week or two” ( Healthline ).

But the danger of rationing insulin is both short-term and long-term. “The short-term is the danger of going into DKA,” says Basina, MD, “The long-term danger is developing complications of diabetes such as heart disease, nerve, kidney, and eye problems as well as recurrent infections.

That means that rationing insulin has the potential to kill someone with Type 1 diabetes immediately, or there’s the outcome of it dramatically shortening their life.

Smith-Holt told Beyond Type 1, “I have been hearing more stories like Alec’s. The more his story gets out there, the more people contact me and tell me that their loved ones passed away this way, because they couldn’t afford their insulin, or their family member has filed bankruptcy. It’s just heartbreaking.”

Insulin was discovered in 1921 and its patent sold for $1 to the University of Toronto in the hope that no company would have a monopoly on it and that people with Type 1 diabetes could have affordable access to it. Nearly 100 years later, that doesn’t seem to be the case, at least not in the United States.

Since 1996, the “big 3” insulin manufacturers Lilly, Sanofi and Novo Nordisk have increased the list price of insulin in lock-step by 1,123%. Although insulin manufacturers have blamed PBMs (pharmacy benefit managers) as well as health insurers for the rising cost of insulin, it appears to be a problem complicated by all parties involved.

“While the insulin supply mirrors that of many other prescription medications,” says Greg Brown in The Insulin Pricing Machine, “the ADA reported that it was not possible to pinpoint any specific reasons for the surge in prices.”

Seeing the insulin rationing drama unfold in The Resident suggests that people are at least taking notice of the problem, though it doesn’t offer much hope for a solution in the near future.

Basina offers that “each pharmaceutical insulin-making company has a program for compassionate insulin. You can ask your healthcare provider to help you with filling out an application form and if you qualify from income standpoint, you will get approved for a year supply of insulin.”

Not everyone qualifies for these discount programs though. Another option is to buy NPH insulin over-the-counter when in an emergency and a patient is unwilling to go — or unable to afford going — to the emergency room. This is not a long-term solution though, as NPH has a delayed peak time and stays in the system longer, making glucose control difficult, leading to variability and poor outcomes.

Chapman from The Resident says, “Often in television shows and movies we use people with diabetes as a plot device — they need insulin or they’re going to die, they need orange juice or they’re going to die — it is an easy red herring, flimsy plot device to add drama. We wanted to show it as a real thing, like these are the issues that diabetics struggle with and that diabetics are real people.”

Abby is a fictionalized character, but maybe she’s the very thing needed to bring this issue to the forefront. If art is a reflection of society, then this TV drama is holding up the mirror that we all need to see.

Read Who will profit from the cure of Type 1 diabetes? By Dana Howe


#2

Stacey Simms put up two podcasts recently that covered these two stories. Here’s her podcast about the TV drama, The Resident.

And here’s her interview with Alec Smith’s mother, Nicole Smith-Holdt.

Stacey’s style is smooth and professional. She’s the mother of a teenage son with diabetes.


#3

I’m still confused about Medicare coverage for insulin. I thought Part B covered it at the pharmacy, but CVS tech told me it’s Part D. I’ve been getting all of mine free from my endo, but he is moving out of town in a couple of months and we don’t know how long (or if) before he sets up his practice. I doubt other endos are that free with their samples of Humalog. We will try to see him if he gets his practice going, but he may not have access to the same quantities of Humalog. It’s nice getting all we need for free!


#4

Insulin when used in a pump should be billed under Medicare Part B. Most chain pharmacies and some small local pharmacies don’t want to bill under Part B because they make less money on the transaction. They prefer to bill under Part D because they make more and are used to the process. You get to copay when your insulin is billed under Part D and your cost is higher. When billed under Part B (under a different code from Part D), your cost could be nothing.

Both the local Thrifty White and the WalMart pharmacies gave me the runaround for months on strips that should also be billed under Medicare Part B. At the time, I bought insulin from Canada at half the price but ran into ineffective packaging for our weather. This was 15 years ago. A Medicare/insurance paid-for pump plus a willing small pharmacy enabled me to get my insulin for free through the miracle of Part B. They told me that they make far less money billing that way but they feel they are providing a needed service to their customers. In exchange, I had to promise to buy ALL my Rx needs from them. Not a good exchange for them because I don’t take much more in the way of meds. But it has been a godsend for me.

The bookkeeper at this pharmacy recently told me that they had to pay $10,000 to become accredited with Medicare as a mail order source in order to qualify to bill under Part B. Not sure to whom that $10K went. But have qualms about it. Am very grateful that they bent over backwards for their clientele. I guess this is the spirit of a small rural town showing…


#5

that’s what I thought. I’ll have to ask for a cvs manager next time.


#6

This is very helpful/hopeful info. I’m still a few years from Medicare, but a friend who is on it, and is a T1 on MDI, was recently telling me about the staggering amount she has to pay when she goes into the so-called donut hole. “Better start setting money aside now!” she advised. But does what you’re saying mean the donut hole isn’t an issue if you’re using a pump? Does anyone know?

My friend has been resistant to getting a pump–just seems like too much bother to her–but I’d like to mention this to her if my inference from what you’re saying is correct.


#7

this lays it out, regarding insulin for pumps vs insulin not for pumps. CVS pharmacy in my area is WRONG. I’ll be having a chat with them.


#8

I have United Healthcare supplement. my cost for insulin under Part B would be zero, as they cover the 20% that Medicare doesn’t cover.


#9

Medicare Part B covers external durable insulin pumps and the insulin that
the device uses under durable medical equipment if you meet certain conditions.

The document doesn’t specify what said conditions are, but I’m guessing this refers to the fact that they don’t cover pumps for people with T2.


#10

No, that phrase is not pertaining to Type 2. It pertains to the medical necessity to use a pump in lieu of other forms of insulin deliver, ie, pens/syringes. Type 1’s are not automatically provided insulin pumps. :). There are requirements including testing frequency and a number of other criteria which I’ve forgotten.


#11

Of course, it’s more complicated than that. Many people with T2D do qualify under these rules. Here’s the pertinent section of Medicare rules about insulin infusion pump eligibility. It’s taken from this National Coverage Determination document.

Sorry for the fine print! The short story is this: you must meet Criterion A or B and the General CSII Criteria which specifies a maximum c-peptide level with a concurrent blood glucose check <= 225 mg/dL.


#12

My wife spent months getting her pump supplies covered once she went on Medicare because her c-peptide was JUST over the threshold. Eventually, the doc wrote about other issues such as extreme sensitivity to insulin,. as well as lows, and Medicare then allowed her to get her pump supplies. It’s all about having a doc who will go to bat for you, if you don’t qualify under the general rules. Thankfully, our doc is one that does whatever it takes. we’ve gone thru a number of endos, and the one we’ve had for over the last 15+ years is the best yet.


#13

Your CVS manager will probably lie and try to steer you to Plan D. Am I being too cynical?


#14

The doughnut hole is a feature of Plan D. Plan D is an insurance vehicle you are coerced to buy because of the penalty levied if you don’t buy it and want to some timelater. Part B has no doughnut hole and specifically covers medical equipment and supplies necessary for that medical equipment. A tester is deemed to be medical equipment, hence the strips should come under Part B of Medicare. Same with insulin that is used in an insulin pump, as well as any other supplies you get for that insulin pump and, probably for any approved CGM.

Your friend, if she is over 65 and qualifies for Medicare and buys Part B, should definitely get her doctor to prescribe an insulin pump through Medicare. Then the pump, all the supplies and the insulin will come under Plan B and cost will be reduced or free if she has supplementary insurance that will cover the copay. And, frankly, once she has a pump she will love it because it will make life so much easier for her on various fronts.


#15

There is NO WAY that I’d pay CVS via the wrong plan. It’s going to be Part B or the highway.


#16

Hi Terry,
I did also catch the Diabetes Connections podcast and listened to Alec Smith’s Mom. And once again I was shocked, angry, upset and so very sad that the communication between doctor and patient is not very good.
She said that Alec did ask his doctor about the lower prices insulins out there. And he said how expensive the newer ones were. I don’t understand how this doctor was not picking up on the fact, he had no money. And what really made me angry was he said those insulins would not work with his lifestyle! First and most important, he wasn’t given that opportunity so he has no life now. But most of us long timers, used those insulins everyday. I used Lente and regular and like Alec worked in the restaurant business for many, many years! It was by far not good, insulin leaking when I was at my busiest (meal times) but I made it work. I just don’t understand why his doctor couldn’t take a little time to find out his family/work situation and figure out how to make it work until he could afford the newer insulins.
These older insulins are by far not great but wow, they kept us alive.
I am so mad that stories like these are still happening. I mean with the discovery of insulin meant people with diabetes could live. They didn’t have to starve themselves just to stay alive. And here we are, once again having people with diabetes having to starve themselves because they can’t afford insulin. It is shameful and this along with other issues will be a fighting point for me moving forward. I have meet too many families who have had this kind of outcome for a family member. Not acceptable any longer. We need to put an end to having to ration a life saving “drug”.


#17

Sally, the basic problem is that life isn’t fair. We’d like it to be, but it isn’t. Vote for politicians who want to stop this sort of gouging. I won’t mention any party or names, as that would be delving into a political discussion, but voting correctly is the best that you can do.


#18

Yeah Dave, I get life isn’t fair. My parents always told me that. I got diabetes as a youngster & they told me I have to work hard & fight. And yes, diabetes very rarely plays fair. But really, we can’t get life necessary treatment to those we need it. And why does open dialogue happen between patient & doctor. Yes, life is not fair and I am not asking for a free hand out. But necessary life saving “drugs” should not be so hard to get.


#19

of course! I can’t argue with that premise. but sadly we live in a world just chock-full of inequities and insanities. I feel blessed that I get the care and meds that I need and feel really bad for those who get neither. What’s equally troubling is the percentage of diabetics who willfully don’t care of high blood sugars, despite having access to all meds and tech that is on the market. Having a fatalistic view sometimes results in “slow suicide”. Too bad doctors can’t figure out how to make non-compliant patients care more about taking care of themselves. I discuss this sort of thing with my endo–it’s sad, the stories he tells.


#20

Yes, I do agree that life can suck sometimes. And if we just suck it up and deal with it, things will work out.
My frustration here is how many of these “non-compliant” patients are really trying but they and their doctor are not communicating very well. Does the doctor understand that they are not taking their meds, or testing enough or eating healthier foods, because they don’t have enough money for all of it. So they have to make choices. Does the patient understand the reasons the doctor is asking them to do what they are asking of them? I really hate non-complaint. Many of these people are very scared but they just don’t have the knowledge of someone who can help them.
This is why I say over and over again, when trying to get back on track, pick just one thing. One thing with biggest impact. Maybe testing every morning instead of a few times a week. Or maybe for a week try testing two hours after a meal. Or maybe walk around the block after dinner 3 days a week. One thing can make that “non-complaint” patient a much happier person.
And again, in Alec’s story, a little bit of conversation between patient and doctor could have maybe prevented this tragedy! Yes, NPH sucks and it’s hard to work with but it would have kept him alive until he had an insurance change and could afford the newer insulins. My Lente years were nightmarish but I do live a somewhat normal life. There were a lot more lows due to major peaking issues, but I made it work. And I think if he had tried those insulins, with some major help from his medical team, he could have made it work.
And I will say it again, no one should ever have to go without a life saving drug!