Shireen: Elizabeth Pfiester is the founder and executive director of T1International, a global diabetes advocacy organization fighting for health rights. Elizabeth has been living with type one diabetes since age four. And she believes that where you were born should not determine where you live or die with diabetes. On this episode, Elizabeth Pfiester, founder and executive director of T1International shares her journey to becoming an insulin activist and founding T1International.

She highlights key issues in insulin access and what organizations, like T1International, have been doing to increase access to care for individuals with type one diabetes. Stay here to learn how you can advocate for yourself and other individuals with type one, to increase equitable access to insulin and diabetes care.

Podcasting from Dallas, Texas. I am Shireen, and this is the Yumlish Podcast.

Yumlish is working to empower you to take charge of your health through diet and exercise and produce the risk of chronic conditions like type two diabetes and heart disease. We hope to share a unique perspective and a culturally relevant approach to managing these chronic conditions with you each week.

Welcome, Elizabeth.

Elizabeth Pfiester: Thanks for having me.

Shireen: An absolute pleasure. Elizabeth, want to start out by asking you, how did you get involved with advocacy surrounding access to insulin, specifically, and then the founding of T1International?

Elizabeth Pfiester: Yeah, so I was diagnosed with type one diabetes at the age of. Um, it was difficult.

It was a challenge. I was in the hospital for a few weeks and had to learn, well, my parents had to learn how to give me insulin injections, to test my blood sugar regularly. Um, it’s a, it’s a really challenging condition to live with it. It affects really every aspect of your life and, uh, has a lot of ups and downs and a lot of – a lot of maintenance.

Um, but I was lucky enough to grow up with supportive parents and to have access, and to be able to afford most of the things that my family needed to keep me healthy, uh, because type one diabetes and other types of diabetes as well, require regular testing of blood sugars, insulin, or other medication, lots of regular access to healthcare and support.

And so, um, as I grew up and I started to study international studies and international development, when I went to college and university, um, I, I learned that not everybody in the world does have access to things like insulin and supplies and that people, still today, in 2021, um, are dying because they don’t have access to what they need because it’s too expensive or it’s, they’re not able to access it.

And so that just really was upsetting and made me feel quite outraged and made me realize how lucky despite having a lot of ups and downs with my own diabetes. How lucky I was to, to be able to have those things and to not have to worry where my next vial of insulin was coming from. Um, so that really, that sort of outrage and seeing the injustice really made me want to learn more and more about what life with diabetes is like in different parts of the world. And I started to connect with different people and just learn more and more. And T1International really started out as a blog, which is kind of a clearing house for all the information that I was learning, because I wanted to be able to share what I was learning and, um, put it sort of out there in the world.

And then eventually realized that more than just sharing information, I wanted to be part of Making things better, and, uh, kind of came to see that there wasn’t a strong patient voice. There, there are advocacy organizations that exist and there are organizations that exist to provide insulin and supplies to people who need it.

But there wasn’t quite a patient led organization that was fighting for long-term sustainable change that was free from influence of the pharmaceutical industry, or other interests, that was purely trying to really fight for patient rights. And so kind of evolved into filling a gap. Um, there’s a huge need and, kind of was just kind of, a lot of things pushed in the direction of turning T1International into a nonprofit. We’re a registered charity in the UK, and we’re also, um, a 5 0 1 C3 nonprofit in the USA, doing work focused on US insulin access issues because there is an insulin price crisis going on in the US and then we also focus globally where, as I said, people are, are still, um, unable to access their insulin in many places.

Shireen: I’d like to dive deeper on that. So can you tell us a little bit more about the state of insulin access here in the United States and also globally?

Elizabeth Pfiester: Yeah. So as I mentioned, there’s an insulin price crisis happening in the US. Um, Since the 1990s, the price of analog insulin, which is the more quote unquote modern insulin.

Although, um, it’s been around for decades, that insulin has increased over a thousand percent, the price, the list, price of that insulin. So people, um, if I was still living in the US – I’m lucky that I live in the UK – if I was still living there and I didn’t have insurance, I could be facing a list price for one vial of insulin of around 300 US dollars.

Um, and that’s people, people with diabetes need, you know, two, three anywhere up to maybe six or more vials of insulin per month. So that cost is astronomical. And even if you have insurance, we know that the healthcare system in the U S is incredibly complex. And even with insurance, you might, you might face copays.

Um, you might have to meet your deductible before you get a better price on your insulin. And so people are facing these huge costs and it’s, as, as I mentioned, people around the world are dying, but there are people in the United States who are dying because they’re rationing their insulin. They’re trying to stretch the amount that they should be taking into a longer period of time and getting really sick and, um, dying from diabetic ketoacidosis. So, um, it’s a really, really terrible situation. I think in some ways it’s been exacerbated by the COVID pandemic. Um, and, and as I say around the world, the, the cost of insulin may not be as much as the dollar-for-dollar comparison amount in the US, but for when you look at average monthly income in Kenya or Tanzania, for example, people are still having to pay huge portions. Sometimes 50%, sometimes 80% of their average monthly income, just to be able to pay for their insulin and their diabetes supplies. Um, so it really is, uh, diabetes is difficult to live with, but then to have the stress and the huge, huge burden of the cost for insulin and supplies is.

It’s really upsetting. And as I said, really unjust.

Shireen: And so help us understand the root cause of this. Why is it that insulin is so inaccessible and so pricey to the majority of individuals with type one who really needed to survive?

Elizabeth Pfiester: Yeah, there’s a lot of reasons behind this. And at T1International, we have a post called “The Eight Reasons Why Insulin is so Outrageously Expensive”, and we go into a couple of different reasons there.

Um, so things like there are three companies who really dominate 90% of the global insulin market and, uh, there, so there isn’t a huge amount of competition. And even with these three companies, you might think, well, those three companies might compete with each other for lower price, but we’ve seen over time.

Sometimes those prices are going up in lockstep. So one company will raise their price. The next will follow. And it’s really infuriating to see that when, again, most insulins have been around for a really long time and the cost should be going down, but it has been going up. And, um, from the opinion of T1International, and in my opinion, personally, that’s, that’s down to corporate greed.

And the fact that insulin is moneymaker for, for these companies. And they know that people with diabetes will die without it, so they can keep sending up the price. And again, that the system is very complex and it’s very broken. And there are other players like PBMs and insurance companies who are also benefiting from these high costs.

But we feel like at the end of the day, it’s really the, the power and influence of these companies. That’s keeping that cost high. And they also put a lot of money into the government, into political leaders and legislators to, you know, in some ways, have them stay quiet about these issues because then they’re lifting up their – their campaigns.

Um, and then there’s things like patent evergreening and different mechanisms that are used to really tweak, maybe tweak the injection device that you need to take your insulin. So that then again, no other players can come in because they say, well, we have a patent on this. It’s good for X number of years.

Nobody else can come in and try to sort of compete with, with what we’re doing. And so these small incremental changes, which aren’t actually hugely benefiting people with diabetes and keeping the prices high. So that’s a couple of reasons, but, um, there there’s a lot, a lot of reasons why insulin is so expensive and, and tests, it’s down to that influence of these companies.

Shireen: And so what I’m hearing is what’s at the heart of, this is really corporate greed. So you’ve got, you’ve got some of this domination on the supply itself, and then when you look beyond that, they’re making these incremental changes to justify the increase in pricing.

Elizabeth Pfiester: Yeah. And equally patient advocacy organizations are funded in huge part by the industry. And while many of the organizations do really, really important work. Uh, they take significant funding, and therefore of course, no one wants to bite the hand that feeds them. So, um, nobody wants to kind of speak ill of, of their funder, or even say that they should be doing something differently.

Um, there’s actually just today, a report came out from Patients for Affordable Drugs, who is, uh, an organization that doesn’t take pharmaceutical industry funding, and it was kind of digging into different patient advocacy organizations and various conflicts of interest that they have that may be keeping them from doing more on these issues.

Shireen: How have you worked with T1International and other advocates to increase access to insulin, diabetes, supplies, medical care, and education for all people living with type 1?

Elizabeth Pfiester: So at T1International, we really believe that change comes from community, and it will come from people living with the condition, because those of us who rely on insulin and understand firsthand what it’s like to live with the condition are those who can best make change that’s going to really impact the largest number of people. So through T1International, we really help people kind of use the voice that we know that they already have, and give them tools and training and support to, to make change, whether that’s through, first and foremost, building their community and connecting with others so that they can learn and educate themselves and each other together.

And then also kind of building on that, helping them create sort of tangible advocacy plans so that step-by-step, they can execute these plans to reach their goals, whether they’re their goal is to get legislation passed in their local state legislature, which we’ve had quite a bit of success with, um, because each state is different, and their laws are different.

So we’re seeing things happen. Like Maine just passed a version of Alex Bill, which is based on Alex Smith who died from rationing insulin. Um, the first iteration of that bill was passed in Minnesota, and it does, uh, provide emergency insulin at a very low cost and is like some steps in the direction of holding the pharmaceutical industry accountable.

So we now see that Maine has passed that legislation as well. And that’s down to volunteer, grassroots advocates, really engaging with their legislators and building a community to share their stories and share the impact and why this type of legislation is needed. We also then work and do national level campaigns, and we’re working on the federal level as well as we know that that’s going to, again, impact the most people, but equally it’s about keeping that education going and keeping this issue in the national spotlight to show that this hasn’t gotten better. There are still issues, and we’re going to keep fighting, and we want to reach some of the most marginalized communities, because those are the folks that maybe can’t engage in advocacy because you have to have a certain level of privilege to be engaging in advocacy. In the first place, you have to have a bit of spare time.

You have to have access to a computer. For the most part, we try to find ways around some of those barriers, but we, we do know that. We’re not always hearing the voices that we most want to. So in every bit of the advocacy that we do, we try to make sure that what we’re pushing forward is going to impact those who are most effected, and those who are most likely to ration or to find themselves without the support that they need.

Shireen: So tell us about this #InsulinForAll. Um, what is it about?

Elizabeth Pfiester:  So Insulin For All was a campaign that was started with T1International and another organization called the Pennsy Trust back in 2014.

And the idea was really to highlight the global issues that we’ve just been talking about and some of the most pressing needs of the diabetes community, um, on world diabetes day, which is November 14th every year. And we just really wanted to make sure that world diabetes day was really about the whole world and our global community.

And so that’s kind of the foundations and the origins of Insulin For All. We did Campaigns, you know, photo led campaigns and having people share their stories, and really just trying to bring the global community together. And since then, the hashtag has really grown in some ways. It’s taken on a life of its own.

The Insulin For All movement is that it’s a movement, which is bigger than just T1International. It’s it really spans the whole diabetes community and beyond. And again, very active in the United States it’s even been used for sort of sharing insulin and supplies because people who don’t have access for whatever reason are reaching out to strangers and being helped by strangers, which I think is an outrageous state of affairs that people have to do that.

But it’s also an amazing show, showing of our community and how people can help and support each other. So, uh, yeah, the hashtag is used for all sorts of advocacy and it is really used by the global community to push their advocacy efforts for.

Shireen: I want to shift gears specifically for those listeners here that have type one diabetes, um, how can they be better advocates for themselves and help your fight to give everyone access to these necessary resources?

Elizabeth Pfiester: Yeah. So anyone who wants to get involved can visit T1International.com and we have, um, several different sections on the website, full of resources, ways to join and get involved as a volunteer. You can join your state chapter. We have 38 state chapters across the US, and those are led by amazing grassroots volunteer leaders who through our support will give you training and resources and, um, you can get involved at whatever level you’d like, whether that’s just kind of following along and liking our content on social media or getting in touch with your, your chapter and joining as a member and you know, testifying. Um, and again, we give you tools for those kinds of things, but, um, there’s, there’s various degrees and we have a lot of information and resources on our website, so you can learn more. And our team is happy to help and support that as well. We also have a campaign going right now called “100 Years From Gift to Greed” because this is the hundred-year anniversary of insulin’s discovery. So again, pretty wild that insulin’s been around for a hundred years, but one in two people globally can’t access or afford insulin, which again is a very sad state of affairs. So we are shouting about this and we are saying, we don’t want to celebrate. We want to celebrate the discoverers, but we don’t want to celebrate this anniversary. We want to advocate. So we’re asking people to join in support that campaign and advocate with us.

Shireen: What else should our listeners know about diabetes care, advocacy, and access to insulin?

Elizabeth Pfiester: Oh, there’s so much to learn. There’s so much to learn about the global situation. But I think for me, one of the most important things to remember is that we are a global community. Whether you have type one diabetes, whether you have type two diabetes, whether you have gestational diabetes or anything, think in between, uh, we want you to be part of this movement.

And although our name is T1International, which, you know, originates from type 1 and the urgency of dying without insulin, we all need to stand together because people with type 2 rely on insulin and other medication that is often unaffordable. So I think for me, it’s just really important to say that we are in this together.

And if there are ways that we can make other people in the community who don’t live with type 1, but maybe love someone with type 1 or live with a different condition. We, we know that we’re stronger together and that the only way we’re going to make changes by coming together as a genuine global community.

Shireen: And with that, Elizabeth, we’re toward the end of the episode. At this point, I’d love for our listeners to know more about how they can connect with you, learn more about your work. Where can people essentially go from here? Cause it seems like this is a – it’s certainly a huge problem. It doesn’t seem like this – this problem has gone away.

In fact, it is exacerbated over the past, uh, over the past decades. Um, where, where do we go from here?

Elizabeth Pfiester: Yeah, that’s the big question. And, and I think really, we need more voices and the more people that get involved, the more power we will have and the pharma-companies, our government, um, high-level actors like The World Health Organization.

They’re going to see that we’re not going away. We’re not going to be quiet. We’re going to keep demanding change and standing up for our health rights. So, if that sounds like something that you want to be a part of, again, there are different ways that you can be a part of that, whether that’s just educating yourself and educating your friends and family or, or becoming an advocate, which means, you know, sharing your story and sharing about these, these facts and information. Um, that’s I think that’s, what’s going to create the change both on the federal level in the United States. And again, on the high level globally, we’ve already seen that some of these high-level actors are making diabetes a priority.

And, um, we, we think it’s hugely important that people living with the condition have a seat at the table. So, um, the more people directly affected that join us, as well, the stronger we will be. Uh, but the more people on the whole that come with us, the more we, you can learn from each other.

Shireen: And now, where would you ask our listeners to go to do that?

Elizabeth Pfiester: T1International.com/joinus. Um, but if you just go to T1International.com, it will direct you, um, to all the different pages and resources and pieces of information that might be useful. And if you have specific questions, you can also email us at contact@t1international.com, so we can help direct you or answer any questions that you might have.

Shireen:  To our listeners out there, we want to ask you, and head over to our social media @Yumlish, to answer this question, what steps do you want to take to improve access to insulin for yourself and others around you? Head over to our Facebook, our Instagram, to answer that question. With that, thank you so much, Elizabeth, for joining us. It is certainly a lot of work to do ahead and it’s voices like yours that keep us propelling forward. So thank you for the work that you are doing.

Elizabeth Pfiester: Thank you so much for having me. I appreciate the opportunity to chat.

Shireen: Thank you for listening to the Yumlish Podcast. Make sure to follow us on social media @Yumlish_ on Instagram and Twitter and @Yumlish on Facebook and LinkedIn for tips about managing your diabetes or other chronic conditions. You can also visit our website Yumlish.com for even more information, and to get involved with all of the exciting opportunities Yumlish has to offer.

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