Why Diabetes Patients Are Getting Insulin From Facebook

IRA FLATOW: This is Science Friday. I’m Ira Flatow. Close to 10% of Americans have been diagnosed with diabetes, according to the CDC. And that’s, what, one in 10? With those odds, you probably know someone with this disease. And if you do, you know that diabetes patients need to be treated with insulin and get frequent injections of this hormone that will help regulate their blood sugar. And if not, they face serious complications like blindness, nerve damage, or kidney failure.

But in a sure sign that our country’s health care system is broken, many of these patients have trouble getting access to lifesaving insulin through official channels like pharmacies and hospitals, even when they have health insurance. And in such cases, these patients are turning to what one recent study called underground exchanges– black market platforms like Craigslist and eBay and Facebook to get the drug they need. In other words, they’re depending on the kindness of strangers to stay alive.

My next guest is one of the authors of that study, which surveyed patients about their use of these exchanges. She’s Dr. Michelle Litchman, a nurse practitioner and researcher at the University of Utah College of Nursing in Salt Lake City. And remember, we want to hear from you. If you have diabetes and you have to borrow insulin from a friend or a family member or you’ve turned to a social community for cheaper access to the drug, give us a call. Our number, 844-724-8255, or tweet us at @scifri. Welcome to Science Friday, Dr. Litchman.

MICHELLE LITCHMAN: Hi, thanks for having me.

IRA FLATOW: What tipped you off to researching this question? How did you know all of this was going on?

MICHELLE LITCHMAN: Sure, there’s two things. So one, I’m a nurse practitioner at a diabetes center. And I started talking to patients about the fact that they had gone online and found somebody that they wanted to exchange supplies or insulin with. And also as a diabetes researcher who examines how people use online communities to support help, I was also seeing posts about this. And so the clinical and the research site came together. And we pulled a team together from the University of Utah, College of Nursing, U Health, and University of Colorado to explore this issue.

IRA FLATOW: I thought it was very surprising to see that you found over 50% of survey respondents said they donated to insulin.

MICHELLE LITCHMAN: That’s true.

IRA FLATOW: Wow.

MICHELLE LITCHMAN: So it was insulin and it was also supplies, so glucose strips, glucose sensors. We pulled them all together.

IRA FLATOW: Tell us a little bit–

MICHELLE LITCHMAN: But definitely insulin was one of the them.

IRA FLATOW: Tell us for people who don’t know how insulin works. How did diabetic patients use it?

MICHELLE LITCHMAN: Sure, so insulin is injected either with a syringe or through an insulin pump. So it’s injected subcutaneously, or right under the skin. And then that helps to manage glucose levels that are rising because people cannot make enough insulin, or any insulin at all.

IRA FLATOW: I asked for callers to call in about the problem. I want to go to some calls because we have lots of them. Let’s go to Michael in Oakland. Hi, welcome to Science Friday, Michael.

MICHAEL: Hi, Ira, thanks.

IRA FLATOW: Go ahead.

MICHAEL: So I am not myself a diabetic and have not been involved in any of these networks. What I am is a Canadian, and I wanted to raise concerns about a widely held solution for the insulin and other expensive drug problems in the United States, which is to import them from Canada.

And I can tell you as a Canadian when the researchers in this activity historically, and even recently during Bernie Sanders’ campaign trip into Canada just a month or two ago, it causes local shortages in the supply. The reason we have low drug prices, or at least lower drug prices, in Canada is not because the drug companies are beneficent. It’s because the provinces negotiate the prices and the supply with the drug companies. And that’s what they supply at that price.

IRA FLATOW: Michelle, do you agree with that? Is that what’s happening in Canada?

MICHELLE LITCHMAN: There’s definitely people that were in our study that were accessing insulin through Canada, even Mexico and Puerto Rico. And so our neighboring countries here in the United States are definitely being affected.

IRA FLATOW: Let’s go to Noel in Connecticut. Hi, Noelle.

NOELLE: Hi, there.

IRA FLATOW: Go ahead.

NOELLE: So I am a 29-year diabetic Type 1 and over the course of 29 years with the disease, have seen the price of a bottle of insulin go from $25 for me up to $400 when I’ve had my insurance with a high deductible plan. And so I have friends that are diabetic. We kind of go on who’s got the high deductible this year. And there’s some hoarding that goes on and some sharing that goes on. And the same thing with supplies– I have the pump, and right now I can’t get my insulin supplies because I owe them a good amount of money. So my doctor has been able to get me some samples of things that I’m trying to just, like, cover myself with.

IRA FLATOW: Let me ask Michelle about it. Is this typical, Michelle? Is this how the underground works?

MICHELLE LITCHMAN: Absolutely. So what we saw in our study is that people either had a personal network– family, friends, neighbors– or they started going online and in different diabetes online communities. And they found other people who could support them with the medications and supplies that they need. And I think one of the things that’s really important here is that people with diabetes were not trying to make a profit off of another. So they weren’t selling things to make a profit. They were genuinely trying to help another person because they didn’t want to see a peer with diabetes suffer the consequences of not having the things that they need to survive.

IRA FLATOW: OK, let’s go to some more experiences– Joe from Cincinnati. Hi, welcome, Joe.

JOE: Hi, Ira. Thanks for having me.

IRA FLATOW: Hi, go ahead.

JOE: Yeah, I’ve been a Type 1 diabetic for about 35 years plus. I was diagnosed in March of ’84. And my last job, I had a really high deductible, like someone mentioned. And I had to actually buy some insulin and some supplies for my insulin pump through a Facebook group. That has since been shut down, but there was definitely an underground marketplace for people who– I mean, I had a good job. I just didn’t have that good of insurance.

And that was about three years ago. I recently have gotten much better health care. And someone reached out to me on Twitter and asked me if I could help a woman who lives in Ohio not far from me. Her husband had run out of insulin and was actually very close to having to go to the ER. And so I was lucky enough to have three vials of insulin that I had with extra. And I mailed all three vials free of charge. So they were really, really grateful. And I was happy to help.

IRA FLATOW: Thanks for sharing that story. Michelle, when Facebook hears about these groups, what happens? Do they shut them down?

MICHELLE LITCHMAN: So there has been a policy in place in which if Facebook finds out that this exchange is happening within a group, they do get shut down. And so then it prohibits people from being able to access what they need. And I want to comment really quickly on the high deductibles. In our study, we found that most of the people that responded to the survey were not at the level of poverty. Most people had a decent income. And over 95% were insured. And so there’s definitely an issue with the high deductibles. There’s definitely an issue with how much copays are with regards to the tier.

IRA FLATOW: Is this unique, this shortage and the ability to find it underground? Is this unique to insulin, or are other diseases and drugs finding homes there, too?

MICHELLE LITCHMAN: So with regards to diabetes, there’s definitely other drugs that are also being shared online. So as we look at innovation and there’s new diabetes medications and also technologies, continuous glucose monitors and various insulin pumps, as we innovate, people are going to want to have those new things that are really making people healthy. But innovation is nothing if you don’t have the means to access those things to survive.

IRA FLATOW: We have a tweet from Kate who says, I’m a nurse who has to ration insulin. Also turned to Reddit to get insulin. I’m now on good insurance, but it was difficult for a time. I now donate extra supplies and insulin to people who may not have had it. It sounds just like what our caller went through.

MICHELLE LITCHMAN: Absolutely. I think a lot of people have a pay it forward kind of attitude when someone helps them. When they’re able to, they decide that they’re in a place where they can help another person. And so it’s very reciprocal, this altruism that we’re seeing.

IRA FLATOW: Well, what do you think personally about this? You’re a health care provider. Do you approve of these patients getting insulin in any way they can?

MICHELLE LITCHMAN: Well, so I think we have to understand the risks related to this underground exchange. So one of the issues is we don’t always know how insulin or supplies are stored. Are they at the correct temperature? There’s also issues related to expiration and whether or not, for example, an insulin vial has already been opened. There’s an expiration that’s tied to that. But there’s also risks on the other side. So if the alternative is to ration or the alternative is to not take medications at all, there’s definitely risks tied to that, which include going to the hospital, maybe being in a diabetic ketoacidosis or even death. And we’ve seen those cases of death, where people have rationed or not taken their insulin because they couldn’t afford them. And there’s been cases all over the news where there have been people who have passed away because of this.

IRA FLATOW: Are you saying there are people out there who will give you bad insulin knowingly or tried to take advantage of you somehow?

MICHELLE LITCHMAN: So we saw a– I don’t think it’s taking advantage. We saw one case where somebody knowingly took insulin that had not been refrigerated, and that was disclosed to them and they took that insulin knowing that risk. One of the other things that we saw was that somebody had received a continuous glucose monitor transmitter that wasn’t functional. And so they just couldn’t use it. But out of all of the cases that we surveyed, there were only three reports of any type of adverse event. And it was essentially disclosed to them in advance, and people chose to take on that risk.

IRA FLATOW: Let’s go to San Francisco. Carrie, welcome to Science Friday.

CARRIE: Hi. I have had Type 1 diabetes for 25 years. I am also a nurse. And it is kind of like every time I switch jobs or am in between one thing and another, I have to get insulin from other people, even though I am not uninsured because of the way that our health care system works with the patchwork. The paperwork can take– last time, it took three months for me, even though I was paying COBRA the whole time. This time, it has taken two months, where I have no access to the coverage that I’m paying a lot of money for.

And so I have to get insulin from friends. And as other people have brought up, it’s really ridiculous because this medicine, I’ve been on it since 1958. And it was 30 bucks a vial then, and now it’s 350. And it’s just– people are dying, and the insurance companies are making record profits. And I think Medicare for All is one solution that would help because even though I have never been without coverage, I am often without access to my prescription drug coverage anytime I start a new job. Because there’s prior auths and switching and the paperwork.

And I would say it’s happened to me three times in the last five years. And I’m a nurse. I’m pretty savvy at navigating the health care system and advocating for myself. And the only thing that’s kept me out of the emergency room is borrowing insulin from friends.

IRA FLATOW: OK. Thank you for taking the time to talk with us today. Michelle, what about ways to regulate these types of unofficial exchanges? Maybe patients can send extra insulin to a central bank where they can be checked and distributed to people who need it? Creative thinking like that?

MICHELLE LITCHMAN: Yeah, there are some states that actually have laws in place where they can actually do a medication recycle program. Although many states have that law in place, not all states actually enact that. And one of the things that I think is important to realize about those programs is typically they service those who are 200% below the poverty level. And as we’ve heard from callers and as we saw in our study, there have definitely been people who typically have reasonable jobs with health insurance that cannot afford what they need. And so those people would actually be left out of some of these medication recycling programs.

IRA FLATOW: Talking about insulin with Michelle Litchman, PhD, and a nurse practitioner at the University of Utah College of Nursing on Science Friday from WNYC Studios. There are lots of people. Here’s a tweet. Carri wants to know via Twitter, talk about the Walmart insulin. Now maybe, Michelle, you can tell people what this is. It’s older and doesn’t work the same as Novolog and Humalog, but could be a lifesaver for folks with no choice. I am a mom with two kids with Type 1. What is she talking about?

MICHELLE LITCHMAN: Sure. So there’s different types of insulin on the market, and they all work differently. The timing or how they peak are different. And one of the things about the– there’s two different types of Walmart insulin. One is regular and one is called NPH. And there are the older insulins that we’ve had on the market for a long time. And they have timing issues that are a little bit less physiologic than some of the newer medications that the tweeter spoke of.

And with that, we need to pay attention to timing and also dosing of those medications. And so one of them, NPH, typically has to be dosed twice a day, as opposed to newer medications that might need to be dosed once a day that can last all day. And there’s also timing issues with the mealtime insulin regular, where you dose 30 to even 60 minutes in advance of a meal. Where a lot of the newer medications, it’s more like 5 to 15 minutes. So there’s definitely differences.

And so if people decide to move in that direction, it’s really important to talk to your health care provider to make sure that you’re taking the right dose and that you’re timing it correctly. And yes, it is one solution that people can access. There are potentially higher risks of hypoglycemia because of the differencing in timing. And so just really talking to a health care provider about dosing is really, really critical here.

IRA FLATOW: Do you think it’s crazy that we’re talking about in this day and age about rationing something so important to so many people?

MICHELLE LITCHMAN: I do. I mean, this is a lifesaving medication, insulin. And I think that when we see companies that are innovating again and again to try and make better solutions for people with diabetes, medications that work more effectively or technology that works, we have to keep in mind that if there’s these innovations in technology or medications, we need to be able to let people access those innovations. And so, like I said before, these innovations are great, but if access is an issue, who does it help?

IRA FLATOW: Let me see if I can get one last call in here. Well, let’s go to San Francisco. Let’s go to Francisco. Hi, welcome to Science Friday. Quickly.

FRANCISCO: Hi. Good afternoon.

IRA FLATOW: Go ahead.

FRANCISCO: Hi. Yes, I’m a family physician with an interest in diabetes. And I’ve been a diabetes patient advocate and a volunteer for the Diabetes Association for many years. And I’ve just been struck by the comments I’m hearing from patients over the last several years about the outrageous amounts that they are spending for a medicine that is life or death for anyone with Type 1 diabetes and for many people with Type 2. And it just has been remarkable to me that in what is, after all, the richest country on Earth, that we have not figured out how to provide this essential medication for millions of people.

IRA FLATOW: And you’re going to have the last word because we’re running out of time. Dr. Litchman, any reaction to that? You would agree. You just said basically the same thing.

MICHELLE LITCHMAN: Absolutely, I definitely agree. I take care of patients with diabetes every day. And I think that that’s the major issue we’re now running into as health care providers, is people are coming in, saying, I cannot afford the things that you are prescribing me. And so we’re tasked with trying to find solutions for access all the time.

IRA FLATOW: OK. Dr. Michelle Litchman, nurse practitioner and a researcher at the University of Utah College of Nursing in Salt Lake, thank you for taking time to be with us today.

MICHELLE LITCHMAN: Thanks so much.

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