Focus on Access: Anne Peters, MD
People who take insulin require consistently affordable and predictable sources of insulin at all times. If you or a loved one are struggling to afford or access insulin, click here.
What do you think of the current state of insulin accessibility in the U.S.?
I’ve been working in the field of diabetes since before we had human insulin. So back when I started training, we just had beef or pork NPH and regular. Eventually we got human insulin and finally we had analog insulin. So I’ve seen the evolution of insulin and its benefits.
However, I can’t tell you how much the issue of insulin access bothers me. It’s just criminal and it’s hurting people. Nobody asked to have Type 1 diabetes. I don’t think it is widely understood how difficult it can be to treat — it is not just another chronic disease that is easily treated with a pill.
My patients have to think all day long about their diabetes and how to treat it. There’s no other disease that I know where you have to make so many treatment decisions and lifestyle choices in any given day. I think it’s absurd that it’s been made impossible for patients to be able to afford the necessary insulin and tools that they need for treating their diabetes.
In addition to the cost of insulin I am also very frustrated that insurance companies keep requiring my patients to switch from Humalog to Novolog and back again. I spend so much time trying to comfort people that they’re not going to go out of control because they are switched. I hate having to waste precious time and energy on this topic. People with Type 1 diabetes should just have the insulin that they’re most comfortable with. However I do understand about cost and contracting but the process should be made easier to involve patient preference.
Why do you think insulin prices are so high?
It is a complex situation and I am not an expert. However much of the driver of cost is the use of analog insulin for people with Type 2 diabetes. And although there is evidence that there may be less hypoglycemia with basal analog insulin A1Cs are not different. On the other hand people with Type 1 diabetes need analog insulin. What I would like to see are health plans evaluating the needs of people with T1D differently from T2D. I would evaluate the best insulin for the patient and recognize who does and does not need analog insulin.
Can you expand on the analog vs non-analog issue?
I think Type 1s should be on analog insulin, but they need to know about cheaper options. I have had patients die because they don’t know they can go to Walmart and Costco and get inexpensive NPH and regular. So I think that survival with Type 1 diabetes requires that we teach everybody with Type 1 that they can survive on NPH and regular. They can, I know how to do it. It works. It doesn’t easily get your A1C down to target, but you don’t die or go into DKA.
I had a patient from an underserved part of town sobbing in my office and I asked what was going on. She said, “I am so afraid that I can’t and won’t be able to afford my insulin and I’m going to die.” She was terrified of this because two friends in her support group had died because they ran out of insulin. Nobody in this country should be terrified they’re going to die because they can’t get insulin with Type 1. I told her how to get NPH and regular and I gave her a backup plan and what to do if she ran out. She said, “We didn’t know about this. None of us knew that we could just go to Walmart and get NPH and regular insulin.”
What is it like working with the underserved community?
I have a clinic for people with T1D in LA County for underserved patients. It was started in 2000 as a clinic for Type 2s, and we ended up seeing many Type 1s for patients who were having diabetes management issues so a separate clinic was created.
The challenges our patient face there are huge. Access is a big problem and patients flip in and out of being eligible to be seen there. There’s not a single patient in my Type 1 clinic who doesn’t already have complications. And they’re in their 20s, 30s, and some in their 40s, but they all have complications already. Some of them have amputations by the time they’re 30, some of them are on dialysis, some of them are blind. Not having access to insulin or healthcare is deadly with Type 1 diabetes. It’s unbelievable. I think everybody with Type 1 has to not only have insulin, but access to healthcare.
Some of my patients let themselves go into DKA, because once they go into DKA and they’re in the emergency department, they send them out with insulin and that’s one way to get insulin.
How have things changed?
I think that insulin access has become a very, very big issue for my Type 1s in terms of, how much they have to pay and fear of running out. To me, it’s all about the fact that the cost has gone up so much and that the insurance plans have become worse at paying for it.
I spend a lot of my time dealing with how to make insulin affordable for my patient rather than trying to manage my patient’s diabetes. Sometimes almost an entire visit is spent just trying to figure out how to make it affordable. It’s a conversation I didn’t use to have, I used to be able to just manage patients.
Who’s to blame?
It seems to me there are many people involved in ratcheting up the price. You talk to the pharmaceutical company and they have all these explanations, the rebates and this, that and the other thing — I never understand the whole argument. And then I hear, from the pharmacy benefit managers, and everybody has some reason why it’s not their problem and yet it’s a huge problem. Again, I’m not optimistic about this, I think that it’s going to remain a problem.
I think that Pharma needs to have a conscience with regards to this. The way that drugs are sold in this country is a form of rationing. The richer you are, the better access you have, the longer you’ll live, the more medications you have. If you’re not well-off, you don’t get it.
It seems to me, there’s so many people who are trying to profit from the fact that Type 1s need insulin, that it’s mind boggling. Why can’t they just do it like Canada? But, they can’t and they’re not going to. So, insulin is going to remain expensive. Hopefully insulin won’t go up in price further, but it’s already too high. Everyone with Type 1 has to figure out how to get a supply of insulin constantly and how are they going to do that in the context of their life.
What in your opinion is the best solution to insulin access issues?
To me, access to healthcare may be a bigger issue than insulin pricing because again, if you give me a patient with Type 1 diabetes, I can manage them with non-analog insulin and we can make it work. You can just make do, but if you don’t have any access to healthcare, it’s really impossible. Everyone should have access to healthcare, but my patients with Type 1 need it more than anybody else.
So, there needs to be an infrastructure, an access to the kind of the healthcare that works for people with Type 1. I’m very enthusiastic about the tools we increasingly have, but it’s only truly, a tiny percentage of people who can use them. We need a basic form of healthcare that allows for survival with T1D.
And while the cost is less for NPH and regular, there are still people who don’t understand how to access them. Whatever we do, we have to make sure that anyone with Type 1 can figure out how to get insulin. Right now, they could stay alive on NPH and regular, but they don’t know how to do that. The way I look at it, we have to start where we are. We are at a place where it’s incredibly expensive outside of having insurance to get analog insulin. So we need to adequately educate people with Type 1 about how to use NPH and regular so they can survive regardless of insurance status. At the same time we need to advocate to reduce the costs of analog insulin and improve access to healthcare for all people with T1D.
Focus on Access Editorial Disclosure: The position presented above is solely that of the author. Other than fact-checking and formatting, Beyond Type 1 has not edited the content of this post. Additionally, Anne Peters is a member of Beyond Type 1’s Science Advisory Council.