Tag Archives: insulin

Let’s face it: We’re already being Shkrelied.

By now, we’ve all heard about Martin Shkreli, the former hedge fund manager who realized he could make more money in the pharmaceutical space and, through his firm Turing Pharmaceuticals, purchased the drug Daraprim. Daraprim is used to treat malaria, and more importantly, helps in treating AIDS patients as well. Prior to Mr. Shkreli’s purchase, Daraprim was selling for around $13.50 per pill. After the purchase, Mr. Shkreli increased the price of Daraprim to $750.00 per pill.

The very idea of doing such a thing, in pricing a drug that patients need, at a certain price simply because there is money to be made, is a very scary proposition for diabetes patients. Kelly Kunik did an excellent job of explaining why HERE.

But the honest truth is, sadly, that this is already happening to People With Diabetes.

I’m not going to call out anyone. I’ve written about costs of drugs and devices HERE and HERE. The truth is that we are already paying a great deal for drugs and devices that keep us healthy and, you know, alive. Unless they’re not great money managers, these companies are making a great deal of profit. They’re certainly generating a lot of revenue. In many cases, they’re generating a lot of revenue for things that haven’t changed much, if at all, for years.

When you’re generating at least over 3.5 billion dollars for your drug in the United States alone, each year, for years at a time, the notion of “We need to price our drug at this level to help fund our development and research” rings hollow. Certainly, research and development must be funded. But if your drug is generating a billion dollars in profit each year in the USA, for example, for ten years, for example, that’s ten billion dollars. If your drug costs a billion, billion and a half to develop, get FDA approval, manufacture, and bring to market, how long does it really take to make enough money on your current drug before you’ve paid the bill for your next drug?

And let’s not forget that sometimes the people making money are the insurance companies who cover our medications or devices. The insulins on my drug provider’s formulary list have changed three times in five years. That is not happening out of patient need. It’s happening out of corporate greed. The drug provider cuts a deal with a drug maker or manufacturer, puts the drug on the formulary list, takes the drug maker they could not cut a deal with off the formulary list, and in each case, take their own slice of the pie.

I haven’t even gotten to the question of generic insulin yet. But each year that goes by with no generics or low cost options for a 95 year old drug, ever increasing prices for existing medications, and no reasonable explanation of why gets me a little bit hotter under the collar. Oh, and by the way, no one in the federal government is stepping up to try and rein in the gouging of patients, even if doing so might actually help save a few dollars for Medicare and Medicaid, and by extension, our federal budget.

I’m grateful for the contributions that device and drug makers have made toward improving our lives with diabetes. That we must pay such a dear premium for these contributions, simply because we’re stuck with a disease we can’t get rid of, should be too high a price to pay in a world in which a great deal of money has already been made on these things.

In the end, it may have been Shkreli’s instant robber baron tendencies that caused such a public uproar, causing him to lower the price of daraprim a bit after the initial announcement. A competitor making a similar drug has lowered their price to just $1.00 per pill, further cutting into his new venture. I fear that large companies with careful, experienced number crunchers and public relations machines may be doing a much more savvy job of getting us to the same point, without many realizing it.

I hate to say it, but when I look at the numbers, it looks to me like People With Diabetes are already being Shkrelied by the companies we rely on for insulin, insulin pumps, and the like. I think it should be okay for us to say so, or at least ask why. And we deserve an honest accounting.

What has to happen?

I’ve wanted to ask this question, and know the answer to it, for a long time, even before I started blogging:

Why does the cost of insulin continue to skyrocket?

What I’ve found out so far is very little. At least very little that allows me to point my finger in a definite direction and say “this is why”. It’s complicated, and if I were to begin to point a finger in a particular direction, that’s where I would start. We can’t find the forest of cash for the trees.

The information on drug research, side effects, production costs, costs to file with regulatory authorities like the U.S. Food and Drug Administration, efforts to build marketing campaigns and pay sales reps to visit endocrinology practices is…. Non-existent. Nobody knows how much it costs to bring a new insulin onto the market (and keep it selling), and depending on how each phase of research, development, and rollout goes, the costs might vary.

Let’s not forget about the rest of the overhead. In Novo Nordisk’s latest financial results, 11.2 percent of their 4 billion dollars in revenue from January through June went to administrative costs, which includes things like pay and benefits, but not only pay and benefits. That’s 448 million dollars.

That seems excessive. And maybe it is. Maybe it’s not. The point is, we don’t know what’s excessive and what’s not in a financial statement for a company that grossed 4 billion dollars in the first six months of the year and published all of its financial line items in a one page document.

Eli Lilly did a much better job, I thought, of detailing their latest quarterly financial statement, but then again, they’re on the other end of the spectrum, and I had to search a little to find Humalog sales listed in the 28 page statement. In case you’re wondering, it was $1.3 billion year-to-date. For a drug that’s nearly 20 years old. Even if it cost a billion dollars or more to develop and produce these drugs, they have certainly more than paid for themselves by now.

But let me back off here. Maybe I shouldn’t point at Lilly and Novo. It’s not just about how much money is being made.

Actually, it’s about the right of a patient to get medication they need to survive, at a price that won’t have to make them have to choose between staying healthy and putting food on the table. Make no mistake: As insulin gets more expensive, this type of decision is already being forced upon a growing number of People With Diabetes here in the USA.

How companies (by companies, I mean drug makers, insurance, hospitals, etc.) reach the point where they charge as much as they do, and we get closer to the breaking point budget-wise, is a matter of great confusion. I really don’t know if this is by design, or if I just don’t have a good handle on the numbers. Here’s what I know:

Insulin should be more affordable.

When I’m tasked with solving a problem like this, I often think back to when The Great Spousal Unit and I bought our house. We knew we were ready to buy, but we didn’t even know if we could even get a mortgage, let alone whether we could afford one. So my solution was to find out what needed to be done to buy a home, and complete each step along the way, until we either moved into our house or knew where we didn’t qualify.

So in this case, I begin with the overarching statement: Insulin should be more affordable. Now the idea is, what needs to be done to make insulin more affordable? What are the steps? Can they all be accomplished? If they can’t all be done, what can’t be done? Why? How do we break down the barriers? What would have to happen to make insulin more affordable?

Why is a drug discovered nearly a century ago more expensive than ever?

Why is a drug approved in 1996 more expensive today than it was when it was approved?

I don’t know if I will get anywhere. But I really want to have a better working knowledge on this subject. I don’t know how long it will take, but I’m going to try to find out as much as I can.

In the meantime, feel free to give me your knowledge, if any, on why the cost of insulin is getting farther and farther out of reach. I’ll let you know if I find out anything.
There are programs dedicated to helping those who have difficulty meeting the cost of insulin and other diabetes drugs and supplies. Including programs run by Novo Nordisk and Eli Lilly & Co. Rather than re-inventing the wheel, I’ll refer you to this helpful post on the subject from Christel at The Perfect D:
Need Help with U.S. Diabetes Supplies and Medications?

A lot of zeros.

Like many, I’ve seen and heard the recent NPR story:
Why is insulin so expensive in the U.S.?

The story is based on research from Dr. Jeremy Greene from The Johns Hopkins University in Baltimore (still trying to get an interview), where he is a professor of medicine and history of medicine. He did some research on the history and cost of insulin, and published his findings in The New England Journal of Medicine.

The truth is, we all know insulin is very expensive here. And we all have our own opinions on why we think insulin is expensive here (where are the generics?). After reading a few of these stories this week (because diabetes stories with an impact aren’t reported for months, then the same story is reported by everyone in a few days), and then reading comments below each piece, I started to become overwhelmed.

Partly, it was because of the numerous “facts” presented by commenters; and partly, it was because of the fact that I felt the really difficult questions haven’t been asked or answered on this yet. Regardless, I started to feel information overload coming on.

For me, when that happens, I usually try to pull back and simplify the subject at hand. I may not solve the problem this way, but it gives me a good starting point. So that’s what I did. I did some initial research into market share for the three big companies selling insulin in the States. I also researched how much insulin costs me, about how much I use on a monthly and yearly basis, and then I extrapolated that (which is fancy talk for multiplied) by the number of people taking insulin in the USA. I wanted to be conservative in my calculations.

This is not scientific… this is just designed to take a typical Type 1 customer (me), and consider the cost of the life-giving medication that I need every day. How much are me and my D-peeps, and our insurance providers, shelling out for insulin?

According to Dr. Greene’s research paper, there are currently 6,000,000 patients taking insulin in the United States.

I looked at the cost of insulin from my prescription provider for Lantus, Apidra, Novolog, Levemir, and Humalog. According to my prescription plan, the cost of a 100 unit insulin vial (my cost plus my employer’s cost) breaks down as follows:

Lantus (made by Sanofi-Aventis): $250.01
Apidra (also made by Sanofi): $204.56
Novolog (made by Novo Nordisk): $204.65
Levemir (also made by Novo): $250.01
Humalog (made by Eli Lilly & Co.): $204.01

Humalog is not my insulin of choice, but it’s the cheapest in the list, so let’s go with that as a benchmark. In fact, let’s just round that number down to $200.00 to make the math easier. And to make it even easier, let’s say that I use one 100 unit vial of insulin every month. At that rate:

$200.00 per month X 12 months per year = $2,400.00

Now, let’s go a bit further (but not too much), and multiply again:

$2,400 per year X 6,000,000 insulin users in the USA = $14,400,000,000

That’s a lot of zeros, people. And this is just the United States we’re talking about. In fact, research from 2013 suggested a worldwide insulin market of $21 billion dollars in that year alone. And we know that there aren’t any fewer people living with diabetes in this country, or around the world today.

But still, let’s take that conservative $14.4 billion number and break it down by market share across these three companies. Again, there is no way this is science, but it should give us some sort of ballpark estimate of the amount of gross revenue that Sanofi, Lilly, and Novo are generating. The only data I could find on market share goes back to 2011, and is contained HERE. Since that is all I have, that is what I’m going with. Again, I’m just ballparking here. I’m not trying to arrive at the actual-to-the-dollar accounting involved, because how could I? Here we go:

In 2011, Sanofi-Aventis had a 37% value share of the market. Of our $14.4 billion, that would be:

In 2011, Novo Nordisk also had a 37% value share of the market. Of our $14.4 billion, that would be:

In 2011, Eli Lilly had a 26% value share of the market. Of our $14.4 billion, that would be:

Let’s be honest here, and recognize it takes lots of research and development, plus a lot of clinical trial testing, plus building out production of the drug, providing documentation to patients and doctors, and a lot of other things to bring a new insulin to market. What would that cost, exactly? A billion dollars? Two billion? If it cost three billion dollars for Lilly to bring Humalog, my lowest costing insulin to market, they almost certainly would have made a profit on their investment in one year alone. In this country alone.

You know, we still haven’t solved the “Why are there no generic insulins?” question. But really… why would there be? If you’re a director of one of these drug makers, or a shareholder, and you, or someone you love, doesn’t live with diabetes; or you can afford insulin regardless of the cost; why would you not want to fight tooth and nail to keep low cost alternatives out of the hands of patients?

This is where I like to remind people that making a profit is good… until it starts to affect someone’s well-being in a negative way. Then this practice must be stopped. Just like patients should trump proprietary, patients should also trump profit. Believe me… there is still plenty of money to be made.

Guess what? It costs a lot of money to buy insulin to stay alive too. I think… I hope… we can find a—dare I say it—Happy Medium here. I’ll be okay with drug companies making money on insulin, if they’ll be okay with me affording said insulin so I can stay alive. For a long time to come.

A few D and non-D thoughts.

Because this is my blog, here are a few random diabetes and non-diabetes ramblings, in no particular order:

– Ever notice a difference in how your diabetes works with different insulins? Don’t answer that. I don’t want to know… yet. The fact is, they all work. It makes sense if they don’t all work the same. The trick is in finding what works best for you, and then not using what you’re using as an excuse for results that don’t make you happy.

– Additional note: Don’t tell me they all work the same, then tell me I have to pay three fucking times more for one than I have to pay for another. There’s a point where copyrights of manufacturers and the rights of so-called insurers need to be tempered by the needs of patients who need said insulins to survive. Three fucking times more means the balance is skewed too far toward the manufacturer and/or the insurer, and not enough toward the patient.

– I’m very excited to be speaking later on today with the brother-sister team of Hayley and Ethan Maurice, who earlier this year climbed Mount Whitney, tallest peak in the contiguous United States, raising thousands for JDRF. I’m eager to find out how things have been going since their backpacking adventure, and get a little inside scoop on how things were during their climb too.

– Part of the reason why I’m speaking with the Maurices today, and not before their trip, is because my life has been scheduled beyond belief for the past several months. I mean, I’ve had something scheduled every single Saturday morning going back to mid-May. That’s the last time I’ve slept past 7 a.m. on any morning. Sorry to complain about it so much, but every time I whine about how busy I am, it kind of lets off a little of the pressure I’m feeling, plus it helps me to focus on what is really meaningful, which is the fact that I’m amazingly lucky to be so busy. And this Saturday morning: I’m helping a friend on the other side of town at 7 o’clock. Then I’m meeting a rep from a pump maker. See what I mean?

– I get the fact that people are feeling a little jealous about the ALS ice bucket challenge. I’ve seen enthusiastic ice bucket challenge videos from people who have never donated to any of the diabetes-related things I’ve advocated for. Hell yes, I’m jealous. But I don’t begrudge them one ounce of their fun nor one dollar of their fundraising. I don’t wish Lou Gehrig’s disease on anyone any more than I wish diabetes on anyone. They are both horrific things to have to live with, and the sooner they’re both eradicated from the earth the better. I’m sad that we in the diabetes world get a lot more attention for complaining about an article in the New York Times than we get for helping to save the lives of children who don’t have access to insulin or the means to pay for it. But as I’ve noted before… when I compete, I don’t feel good, even when I win. When I help, I feel good, even if no one notices. So let’s keep our eyes open for opportunities to help, and if we keep helping, I think an opportunity will present itself and grow like this one did for ALS. If: We are all working together. Supporting each other.

– Speaking of other things I (probably) have no business weighing in on: Is it okay now to call this whole Ray Rice thing a fiasco? Maureen probably had the best take on it yesterday when I asked her whether she thought the NFL had knowledge of the elevator video prior to yesterday. She said: “Sure they knew the video existed. They just didn’t want to pay for it like TMZ did. Good for the NFL for not paying for it; shame on the NFL for not doing the right thing in the first place, video or not.” My take: No one should get a free pass on this issue. Including the fans of my favorite football team. The statistics show that no one is untouched by abuse. I’d be really happy if we could say that no one is untouched by protection from abuse. No one. Ever.

Now I’m off to search for those Medicine X videos from last week. I’m jealous of everyone who was there, but in the most supportive of ways. I can’t wait to hear everything I’ve only heard up to now via Twitter and blog posts. Be safe, be well, and remember: I support you… no conditions.

Stay cool, my friends.

Okay, so obviously, I need to post this. If only to remind myself that insulin becomes useless once it reaches a certain temperature.

About a week and a half back, I had to toss out my reservoir with something like 65 units of insulin left. My site was working well for a few days; then allofasudden, my glucose kept climbing up. Over the 300 mg/dL mark. In the middle of the day, which is very odd for me. When I got home from work, I changed out my set, and wouldn’t you know it, before long, my BG came down into the upper 90s – low 100s.

This sequence of events didn’t surprise me too much: It is summer in Baltimore, and baby, does it ever get hot and humid here. Add to that the fact that our air conditioning unit finally gave out about a week earlier, and it’s no wonder I couldn’t keep the insulin in my reservoir cold.

Fast forward to this week. Again, I have a site that’s working very well, for about 5 days (yes, I often go longer than 3 days… so sue me). And we had a new A/C unit installed about a week ago. I go to bed overnight sitting at a pretty good 96, and I had a granola bar for a snack right before turning in, so I wasn’t worried about going low. I got up for a minute about two hours later, and a quick check of the Dexcom unit showed 124. About what I expected.

Then, about 3 a.m., the Dexcom starts beeping. That loud, “you’re high, you’re high” beep. Now it says 224 mg/dL. Great.

By morning, I was at 266 mg/dL. I took the reservoir out of the pump, and it certainly felt warm to me. I must have been sleeping right on it all night. Those reservoirs aren’t always the easiest things to look through, but what was inside didn’t look like normal insulin to me anymore. So I decided to throw out 70-plus units of insulin this time and change everything over. Today was a sensor change day too, so it was a double blessing while I was trying to get out the door to work.

Novolog, the insulin I’m using right now, has a tolerance up to 86 degrees farenheit (according to their website). By the way, Glucagon is only good up to 77 degrees farenheit. Above those temperatures, bacteria living in our insulin start to break down the protein inside our vials, insulin pens, and yes, pump reservoirs. Also, according to a Mayo Clinic blog post, “Heat can make proteins like insulin harden, which increases the potential for infusion set occlusions”. They also recommend tucking in the tubing instead of leaving it out and exposed to the heat (which is what I’ve been doing).

Man, I used to love summer. Now the hot weather gives me one more thing to consider. I know I will be much more careful through the next few months.

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