Diabetes Patients 'Screaming' About Insulin Costs

Mark Harmel, MPH, CDE; Irl B. Hirsch, MD


April 18, 2016

Editor's Note:
The cost of insulin rose nearly 200% between 2002 and 2013, according to a new study.[1] Increases are tied not only to the rapid-acting insulin analogues and basal insulin, but also the older regular insulin. Pharmacy benefit managers (PBMs) are relatively new players in the market, and they are changing the game. The question is, are PBMs mainly focused on keeping insurance drug costs down, or are they looking to get a share of the profits at patients' expense?

Dr Irl Hirsch is raising questions about how the system works. His recent talks at medical conferences have stirred up audiences, and now he shares his concerns here.

Medscape: You talked about insulin pricing[2] at the American Diabetes Association's (ADA's) annual meeting last year, and you recently gave an updated talk at an ADA postgraduate course. What has kept your interest in the topic, and what is new in your most recent talk?

Dr Hirsch: Patients can't afford their insulin, and I'm dealing with this on a daily basis. I have patients yelling at me as I'm walking into the examination room, even before I sit down. Patients are complaining that they can't afford their insulin. Many of them have had diabetes for decades, and this is the first time that they can't afford their insulin.

The ones who are really screaming are the Medicare patients with type 2 diabetes who haven't been on insulin for that long and, because they fall into the "doughnut hole," can't afford their insulin. The newly insured patients who didn't understand what it means to have a high deductible are struggling because they're paying the full price. And, some patients have seen their insulin copays increase to a level where they can't even afford the copays.

All of these are different examples of new struggles that are getting worse. The situation has forced everybody, including myself, into spending a lot more time trying to understand how we've gotten to this point and how the dollar flows once I write a prescription. The situation has gotten very complicated, because each patient has a different story based on how they pay for insulin.

Medscape: Many people know that you have type 1 diabetes. What are you seeing in your own insulin costs?

Dr Hirsch: I'm a physician, so I can afford it, but I don't like paying a lot more than I used to 5 years ago. I can tell you the exact amount. I used to pay $20 for 3 months of insulin; now I'm paying $150. This is just my personal copay. I can do that, but not everybody can.

If you're a type 2 diabetes patient and you reduce your insulin, the worst that will happen is that your blood sugar will be high. However, if you reduce or eliminate insulin with type 1 diabetes, we're basically going back not 10 years, but 95 years to before the discovery of insulin.

To be fair to the insulin manufacturers, I don't think that they had any idea that things were going to end up the way that they did. Right now, the system is out of control, and I think that it is going to get a lot worse before it gets better.

Medscape: Does the issue go beyond pricing, which is set by the three big insulin companies? What happens in that middle stage, after the insulin is made but before the patients get their vial or pen of insulin?

Dr Hirsch: A lot happens, and it's very complex. The critical point, which I don't think we had 20 years ago, is the PBM. The PBMs get rebates from the insulin companies, so they're the ones who control which insulin goes to the patient. It's all based on what they can profit from with those rebates. The insulin companies have had no choice but to increase the price of insulin so that they can at least keep their profit margin. PBMs get the price from the pharmaceutical companies and then channel the medication to either the pharmacy or directly to the patient through mail order.

In the middle are nontransparent rebates from insulin manufacturers that have been described in a recent New York Times opinion article[3] by Kasia Lipska as being "suspiciously similar to kickbacks." The bottom line is that we do not know what the rebates are between the insulin manufacturer and the PBMs. We have no idea.

Medscape: There have been reports of PBMs requesting that patients switch from one rapid-acting insulin brand to another. Are you seeing this?

Dr Hirsch: This is a huge, huge topic. Most of us would agree that research does not support any major differences between Humalog® (insulin lispro) and NovoLog® (insulin aspart). For the past 3 years, in January, my office has been overwhelmed with all the new prescriptions switching from Humalog to Novolog (or vice versa), either because people's insurance changed or because their insurance company's preferred rapid-acting analog has changed.

I want to tell you about another situation, which to me is more of a medical concern, and that is when the PBM says that they'd rather have you on Levemir® (insulin detemir) than Lantus® (insulin glargine), or vice versa. The PBM believes incorrectly that Lantus and Levemir are identical, so the PBM is acting as the physician in this case and making a change in basal insulin.

The reality is that I don't really care whether the patient has to change the basal insulin, but because the two insulins are not the same, I need to know about it so that I can make adjustments accordingly. The problem is that we've had many situations where these insulins were switched as if they are the same thing, unit per unit—and I wasn't even told about it. The patient was just given a new insulin and was told to use that instead. That is completely wrong and, in my opinion, that is malpractice.

Medscape: Do you think this practice of switching insulin is keeping prices down?

Dr Hirsch: The PBMs keep telling us that if it weren't for them, insulin pricing would be much worse. The reality is that because the insulin companies have to rebate the insulin to the PBMs, they have to increase their prices so that their profit margins stay the same. It's a vicious circle, and everybody is involved. I don't see any way out of this, at least in the United States, where the government is not involved in how this is priced.

You may remember when Lantus was approved in Canada. It was many years before Canadian patients had access to the insulin, because the Canadian government and Sanofi could not negotiate a price that was thought to be fair.

Another example is Germany, where Novo Nordisk did not feel they had a fair price for Tresiba® (insulin degludec). This basal insulin has been priced at a "premium," making it even more unaffordable—and at least in Germany, a line in the sand was drawn. The truth is, it is a better insulin in terms of nocturnal hypoglycemia, but we've reached a breaking point where at least German society is saying that it isn't worth the benefit.

Medscape: How do insulin prices in the rest of the world compare with those in the United States?

Dr Hirsch: We have the most expensive insulin in the world. It doesn't matter what type of insulin—we are by far the most expensive. Even human insulin is expensive. It costs $2 per vial for neutral protamine Hagedorn (NPH) insulin in India, but if you go to Walgreens and pay cash, it's $140. Lantus in India is $12 per vial, but here in the United States, it's between $250 and $300 for the same insulin (Figure 1).

Figure 1. Insulin prices around the world. Courtesy of Irl B. Hirsch, MD.

Prices have skyrocketed during the past 5 years, and what the drug companies will say is, "Well, nobody really pays those cash prices." But the problem is that there are too many people who do have to pay that list price, and they include Medicare doughnut-hole patients and those with high deductibles. Despite the Affordable Care Act, not everybody has insurance. There are many holes in the system. Yes, I can afford to pay $150 for 3 months of insulin, but there are many people who can't.

Medscape: How has this affected the type 2 diabetes community that is concentrated in minority and lower socioeconomic groups? How are they dealing with the costs?

Dr Hirsch: Many patients from lower socioeconomic classes are also obese and insulin-resistant. They require larger doses of insulin, and larger doses equate to higher costs.

When you look at severely insulin-resistant patients with type 2 diabetes and very high A1c levels, some of them have been shown to do better using the older NPH insulin. In situations where extremely insulin-resistant patients need more than 200 U/day, I think that NPH insulin is better. I've been teaching the fellows and residents here in Seattle that once you need that much insulin glargine, it is extremely expensive and hypoglycemia is not the problem. You should try NPH insulin because there is a good chance that you're going to do better with glucose-lowering in that particular situation.

As a rule of thumb, when somebody with type 2 diabetes can't afford insulin glargine, I will send them to Walmart, where they can get their insulin for $25 per vial. A $25 cash price for insulin is actually cheaper than many people's copays.

Medscape: What kind of insulin is being sold at Walmart? Who is making it, and how do you know that it can be trusted?

Dr Hirsch: The insulin is branded as ReliOn™, and it is NPH and regular. It is very trustworthy because they have a contract to work with either Eli Lilly or Novo Nordisk. ReliOn NPH, for example, is going to be the same as Humulin® N or Novolin® N, and ReliOn regular is going to be the same as Humulin or Novolin regular. It's not always transparent who is actually making that insulin, because it changes every year or two.

You can also get ReliOn 70/30 insulin, which is also $25 per vial. For certain populations, it is a very effective insulin to get people with an A1c of 10% or 11% down to < 9%. I just found out last week that there are some Walmart stores in the Seattle area that are charging $50 per vial. That is the exception and not the rule, so shop around and try to find it for $25.

Medscape: Is this a cash price, or do they accept insurance as well?

Dr Hirsch: I'm not sure. All of my patients who use Walmart pay cash because they don't want to put it through the insurance. Often, insurance will have higher copays for the same insulin (Figure 2).

Figure 2. Prices of regular and rapid-acting analogues compared with the price of ReliOn. Courtesy of Irl B. Hirsch, MD.

Medscape: Lantus recently came off of patent protection. Do you think that will drive the cost of basal insulin down?

Dr Hirsch: If anything, the price of Lantus has gone up. They're doing everything they can to switch all the patients to Toujeo®, their insulin glargine U300, because they know that the biosimilar glargine will be coming out later this year. They're also fighting for market share from Novo Nordisk's Tresiba, so they're promoting U300 glargine with discounts, savings coupons, and anything they can do to get patients to use their insulin instead.

Medscape: There is a biosimilar insulin in Europe that will be available in the United States in December. Do you think this is going to affect prices much?

Dr Hirsch: I am told that it won't. There will be a drop of about 10%-20% at most. I think the more interesting question is: What will happen behind the scenes next year that could affect the rebates? I have learned during this past year that what really determines the price of the basal insulin a patient injects when they go to bed is that rebate. That rebate is going to determine the price of insulin because the bigger the rebate, the worse for the insulin company and the better for the PBM. And the PBM is the one who has direct contact with the patient, not the pharmaceutical company.

Medscape: In some ways, we see movement forward with new insulin formulas. But then you talk of moving back to some of the older insulins owing to pricing. Is it really a good idea to go back to some of the older insulins?

Dr Hirsch: I don't want to go backward, but either you go backward or you don't use the insulin. Patients don't have a choice. I don't want to go backward. For the majority of patients, and certainly for all patients with type 1 diabetes, going backward is not a good thing. But for some, it's either that or not taking insulin.

Medscape: So what we can be done about this? Is there a role for some of the professional associations?

Dr Hirsch: The ADA is going to be doing something. The ADA has spoken to all of the insulin companies in detail and has come out with a statement on accessibility and affordability of diabetes medications.[4] I'm also on a task force on insulin pricing with the American Association of Clinical Endocrinologists. Because this is an election year and the cost of medications has turned into a huge political topic, this is going to get more visibility between now and November.

I don't know what is going to happen, but at the end of the day, if we are documenting more ketoacidosis owing to people not being able to afford their insulin, the government will have to finally get involved. Americans traditionally say that that is the last thing they want happening with our system, but that's exactly what occurred with blood glucose test strips when we went into the world of competitive bidding in 2013. The reason is the number of people in this country with diabetes, and the number of people who take insulin.

This is not something that affects just a few patients. It affects more than 6 million Americans.


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