Tag Archives: insulin

Why are PBMs escaping scrutiny?

Well, goody… we get to ponder the implications of another increase in the price of insulin here in the USA. Sanofi and Novo Nordisk have raised the prices of most of their insulins somewhere between 4.4 and 5.2 percent.

As you might expect, this has caused a lot of consternation among those living with and affected by diabetes. As I’ve mentioned here previously, the price of insulin (often, the same insulin) has tripled in the past 15 or 16 years here. People who weren’t previously pissed off are now pissed off, and many who are already pissed off are about to lose it altogether.

I get it. But before you sharpen your pitchfork and start to light a torch (even though no one really ever does those things anymore), let’s step back and consider the whole pricing picture.

Because there’s a lot more than meets the eye when it comes to prescription drugs in America.

Let me ask you: among patients, providers, insulin makers, health insurers, and pharmacy benefit managers, who has never shared anything about what they pay and what they pocket for insulin? Which pane in this insulin window has been the least transparent?

It’s the pharmacy benefit manager.

CVS Health, Express Scripts, and OptumRx are PBMs who, combined, manage prescriptions for 180 million or so in the United States. About 75 percent of the market. They set formularies, those pesky lists of drugs that you can get with a lower co-pay, as opposed to the drug that might actually work best for you.

They help to set prices, playing one insulin maker against another in an effort to try and maximize profit. And they’re probably loving the fact that a lot of the outrage on insulin pricing has been focused on the actual insulin makers themselves.

Yet we don’t know how much they earn off of every vial of insulin they move through their massive warehouses. We don’t know if rebates are involved for insurers, and if those rebates are being applied to lower overall costs for participants in their plans. Or if the rebates are being used to mask an arbitrarily high shadow price for the drug I need to live.

Because pharmacy benefit managers are not telling us anything.

We do know that 75 dollars (USD) a month is about the dividing line for most Type 1 patients… the difference between insulin affordability and insulin rationing to lower costs. That means that an increasing number of Americans, insurance or no insurance, are having to make the hard choice between a life-continuing medication and not paying bills or keeping food on the table.

When did this become okay? This is not okay!

Believe me, I share your outrage when it comes to the crazy spike in insulin prices. Just remember to save some vitriol for the prescription providers too.

In..cre…ment…al…Change

So, you might have seen this news from Eli Lilly and Company this week…

Lilly Diabetes Solution Center Now Open to Help People with Insulin Affordability

If you haven’t read it yet, here’s the short version: Lilly Diabetes has set up a dedicated unit with the purpose of helping people who are having trouble covering their insulin costs.

This is just my viewpoint, and you are free to disagree if you like. I’ve considered this announcement with the old Pros and Cons exercise. First the Cons, then the Pros.
 
 
Cons

– When I think of the term “Diabetes Solution Center”, I think of a mythical place where I’d go to be cured of this condition. That would make insulin a hell of a lot less expensive.

– Insulin is too expensive, price increases have been far too frequent, and we can measure Lilly’s revenue from insulin in billions of dollars. Per year. Why not just lower the price?

– You can only access the Diabetes Solution Center by phone. And it’s not a toll free call. In addition, the Diabetes Solution Center is only open from 9:00 a.m. to 8:00 p.m. Eastern time (US) Monday through Friday. That’s 6:00 a.m. to 5:00 p.m. on the west coast, and 3:00 a.m. to 2:00 p.m. in Honolulu.

– Most people, especially vulnerable populations, only find out about price increases when they go to fill their prescriptions. Many pharmacists, because of contracts they sign with Pharmacy Benefit Managers, aren’t allowed to inform patients of the Diabetes Solution Center. That’s what’s known in business circles as a “gap”.
 
 
Pros

– The day before this announcement, Eli Lilly & Co. didn’t have this option available to patients who struggle to afford the insulin they need to live.

– Lilly is spending money on technology and manpower to staff the Diabetes Solution Center.

– I think, and this is just my interpretation, that Lilly Diabetes is finally coming to grips with the fact that insulin affordability and insulin access are major issues. You can opine on how much they have to do with insulin affordability in America, but again… no one is holding a gun to their heads to force them to do this.

– If one person, or two people, or a hundred people are helped so they feel less burden, pay less for insulin, get more assistance in meeting their deductible, the Diabetes Solution Center will be a godsend for those who are impacted.
 
 
As much as it pains me to admit it, we were never going to go from non-affordable insulin to affordable insulin overnight. This move by Eli Lilly & Co. stops far short of what almost all of us want. But at least it’s a move in the right direction. Incremental change is still change.

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.

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

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