Tag Archives: insulin

The curse I dare not speak.

Don’t worry… I have nothing weird to share today. I’m just going to riff for a bit about something that’s been on my mind, but I don’t like sharing.

As the months and the years go by, I’m worried that insulin resistance is becoming a larger part of my life.

I’ve alluded to this before, but the basics are this: I eat less today, including less carbs, than I’ve ever eaten as an adult. Yet my insulin needs are higher than ever before.

I’ll bet almost every Person With Diabetes feels like they take too much insulin to stay alive. I certainly do. How can you not?

Well, for about six months now, my insulin needs have increased by about 20 percent, on an nearly daily basis.

When I say I’m requiring more insulin, I mean I’m adding more insulin in terms of meal boluses and correction boluses to continue to keep my glucose in a safe range. It’s just… a lot of extra insulin, nearly every day.

My A1c is still very good. But to keep my A1c where it is, I need the extra insulin, and that bothers me more than I can tell you.

It bothers me because extra insulin gives me the feeling that I’m not taking care of my diabetes well enough. If I really think about it, I am taking care of my diabetes. However, when you come to the realization that this is really happening, you start to ask why, and at that point, it’s a short walk to blaming yourself.

I’m also bothered because extra insulin indicates the possibility of extra weight gain. Hell, let’s be honest… at my age, with my ever-slowing metabolism and the fact that I can’t work out as hard as I used to, extra insulin almost certainly means weight gain. Dammit.

So, what do I do? I have to face this like I face everything else.

First, I’ve got to realize that I’m lucky: I have access to insulin and a good insurance plan through work that makes getting insulin expensive, but still possible. Next, I have to rule out any outside reasons why I might need more insulin right now.

Once I do that, I’ve got to do the best I can, so I can mitigate the effects of the extra insulin I’m using. To the extent I can anyway…

There are a lot of things we’ve got to deal with, a lot of things we have to swallow as we go through our lives with diabetes. None of them are things we look at and say, well, that’s not too bad. They all suck.

But to the extent we can make them suck as little as possible, even if they suck a lot, we can still claim the power over how these things make us feel. Especially when we feel powerless to stop them.

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Underwhelmed.

It’s back in the news… insulin pricing.

Helped along by a few well-meaning tweets from Senator Bernie Sanders, and maybe a little by the Epipen debacle by Mylan, insulin makers are finally coming to patients and discussing cost in more detail. See the excellent reporting by Mike Hoskins at Diabetes Mine HERE and HERE. It’s good that they’re at least talking about the ever rising cost of this drug. I mean, it’s good, right?

Excuse me while I yawn.

There are countless reasons why insulin costs as much as it does in the United States. One thing is certain: no one wants to break down those reasons for you in any kind of concrete terms. In the case of “pharmacy benefit managers”, they won’t even come to the table to discuss it at all. And in the case of Novo Nordisk, Eli Lilly, and Sanofi, they’re going to talk, but they’re not going to help you understand how much of the cost of insulin goes to them and how much goes to everyone else in this game of legal graft.

This story has really been in the news for some time… I even wrote about it a year and a half ago, after NPR did a story on it. Yet we’ve continued to see the cost of insulin soar higher.

The amount of revenue generated through insulin pricing is in the tens of billions of dollars per year, most of it coming from here in the United States. It’s more than enough for everyone with skin in the game to be rewarded handsomely. Those are just the facts. Like it or not, insulin is a cash cow for drug makers and “pharmacy benefit managers”. Sure, it costs a lot to produce or acquire, but with Type 1 patients especially, they will always have a market for their product. It’s a drug of necessity, not a drug of convenience. I’m not sure there’s any motivation at all for producers or “pharmacy benefit managers” to take action on price.

I hope the discussions that are taking place between the drug manufacturers and patient advocates result in positive steps that will reduce the overwhelming cost of insulin for patients who need it to survive. But I have to be honest: I’m feeling underwhelmed.

Look, discussion is good. It means we’re not forgotten, or worse, ignored. Discussion often leads to things, positive things. I do worry that, as an HIV/AIDS advocate once told a gathering of diabetes advocates, they’re just “checking our box”. Check the box, move on. I don’t think the attendees at the meeting in Washington in November are the type of advocates who will stand for just having their box checked. I hope not.

But for now, I’m in a wait and see mode. Respond to calls for response on insulin pricing issues offered by advocates. Contact my congressman and senators, maybe my state’s insurance commissioner. Spend too much for insulin. Rinse. Repeat.

Underwhelmed.

It’s time for our government to protect its citizens.

I’m so mad I could spit.

I watched an interview yesterday on CNBC with the CEO of Mylan, which is coming under fire for enormous price hikes on their Epipen product, which helps people suffering severe allergic reactions stay alive. Now it’s pay up or stay alive. Sound familiar?

CLICK HERE for the interview, then come back.

Well, it looks like common sense isn’t lacking for just male CEOs in this country. At first glance, you might think this is a woman who doesn’t get it. But she gets it, far more than she tries to show in this interview. Only what she gets is different from what the rest of us who depend on a drug to stay alive gets.

Don’t give me platitudes about how the entire healthcare system is failing us without giving us detailed examples of how your company is not part of the problem. And announcing a “rebate program” for patients doesn’t count. It’s a way to hold people at arm’s length, making them fill out more paperwork, make more phone calls, dangling the carrot just out of reach. It’s also probably a tax write-off for you, though probably not as big a tax write-off as moving your “headquarters” out of the USA was. Believe me, there are MANY people who are more frustrated by this than you are. “Facts are inconvenient to headlines”? Really?

This goes back to my post from last October. This CEO’s constant misdirection on the topic of drug overpricing shows that Mylan doesn’t really care if someone dies because they can’t afford an Epipen. Why should they care? If there are ten patients with severe allergies in a room, and one of them dies because they can’t afford an Epipen, what does that mean? If I’m Mylan, it means I have to ship less product, but since I’ve raised the price of my product 600 percent in the past few years, I’m still making more money than when I had ten patients paying the lower price. Win-win!

“Pharmacy Benefit Managers” (yes, I put quotes around that faux title) that work for prescription providers like CVS/Caremark and Express Scripts are to blame too. They’re trying to get as much money as they can, and they’re pretty successful, even if no one can think of a single reason why their jobs are needed in the first place.

Recently, Slate.com has weighed in on drug overpricing to note that this kind of practice is costing insulin-dependent diabetes patients dearly too. Welcome to the party, Slate… where have you been?

So the questions are the same as before. What can be done? How do we get Congress to act? How do we get companies to stop forcing patients to choose between rent or complications, keeping the lights on versus dying?

It is abundantly clear that companies don’t care about anything except revenue. They will not budge, nor will they stop this unethical and unpatriotic practice until they are forced to do so.

I just can’t go into another post about what the diabetes community needs to do to reverse this setback for patients. We’re all tired of this, we’ve seen more than enough examples of excessive greed, and it’s starting to wear on us. But I can tell you what is needed:

The United States Government must get involved to protect patients reliant on drugs to stay alive.

This means the three branches of our federal government… the Legislative, the Executive, and the Judicial, must work together to determine and support policy and pricing that protects patients from seeing these kinds of increases in the future. Our government actually does have the power to do something about this, and if they’re unwilling to act, they’re as much to blame for needless complications and deaths as the drug companies and the prescription providers.

Here are a couple of ideas. I’m just spitballing here, but what the heck, it’s my blog. Let me know what you think:

Limit price increases. Simply put, enact legislation that limits how much of an increase can be implemented for drugs. All drugs. Period. With no exceptions. This is the one item where people might cry “socialism”, to which I say no one ever said anything about no profits for companies. Mylan was already making a huge profit on Epipen before their recent increases. Lilly was already making a huge profit on Humalog. Novo was already making a huge profit on Novolog. And Express Scripts was already making a huge profit on all three.

Are your company’s headquarters outside of the USA? Then the U.S. Government should set the price. Mylan (and many, many other companies, including Medtronic) have gone through a process known as “inversion”, where most or all of a company’s execs and offices remain in the USA, but all their paperwork lists them in a lower tax country, like Ireland, for example. Fine. You want to do that? The federal government should now be allowed to set the price on all medications you sell inside our borders. Actually, let’s amend that to say the Feds should set the price on all items sold to patients in my country. You were making a profit already. Enough of a profit to buy a company in another country and then make that company’s “headquarters” your own so you could skip out on paying U.S. taxes. I don’t see why we can’t say, pay taxes in our country or you have no voice on pricing. American capitalism should only extend to American companies. I know, you’re probably worried that they wouldn’t release new drugs in the USA. Trust me: they’re not going to walk away from the biggest economy in the world, regardless of what they say.

Show some guts elected officials. It’s pretty much down to you now. You are going to have to step up and protect patients. Choose to support us through your words and your actions. This is an issue that affects every registered voter in America.

Show us you’re worth voting for. #PatientsoverProfit

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?
 

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