The freedom to be healthy means being able to access the care and medications we need without worrying or sacrificing other parts of our lives. For people with diabetes, who need insulin to make it through the day alive, that freedom is a daily struggle. Though insulin costs just a few dollars to make, it has been sold for more than $300 per vial.
Kristen Whitney Daniels, who serves as the associate director of the U.S. Federation of the Sisters of St. Joseph in Brentwood, New York, is also a Type 1 diabetic and a leader with T1 International’s federal working group, advocating for affordable and equitable access to insulin. She knows firsthand what it’s like to have to ration insulin—and how just health care policies can transform people’s everyday lives.
“The American public in general is facing these high costs that are forcing them to make decisions between food, going to college, getting a car, what jobs to work…” Daniels says. “I’m really passionate about making sure that people have the freedom to be healthy.”
Health care advocates like Daniels know that movements are sustained by celebrating successes like the Affordable Care Act, which NETWORK helped to pass, and the recent cap on insulin costs for seniors instituted by the Inflation Reduction Act, led by the Biden administration. But Daniels explains that successes aren’t just winning on policy—they also include bringing new people to the table and spreading the message in new ways.
Listen to this week’s episode to learn more about advocating for our freedom to be healthy.
Also: The nuns—and friends—are going back on the bus this year! Daniels will be joining NETWORK as a rider on the 2024 Nuns on the Bus & Friends Vote Our Future tour this fall. Learn more here at nunsonthebus.org.
Additional Resources
- The Inflation Reduction Act’s insulin cost caps
- Kristen Whitney Daniels
- T1 International Federal Working Group
- Nuns On the Bus & Friends
Transcript
Sr. Eilis McCulloh: Welcome to Just Politics, a podcast collaboration between NETWORK and U.S. Catholic, where we talk about issues at the intersection of faith and justice. I’m Sr. Eilis.
Joan Neal: I’m Joan.
Colin Martinez Longmore: And I’m Colin.
Eilis: Today, we’re talking about the freedom to be healthy. Here’s a sobering fact: According to a 2023 report published by the CDC, about 9.8 million U.S. adults between the ages of 18-64 reported that they did not take their medications as prescribed—or more likely, they rationed their medications.
Colin: More significantly, this number directly correlates with their poverty level. Which basically means, the less well-off you are, the more likely you are to ration your medicine.
Eilis: Yes–and when you think about it, it makes sense. The cost of prescription medications is staggering. Too many people in the United States must choose between putting food on their table and keeping a roof over their head, and purchasing their medications.
Joan: That’s right, Eilis. It’s a stark reminder that Big Pharma’s profit-driven practices are denying people their basic right to health, which is an issue in NETWORK’s Equally Sacred Checklist.
Colin: Today, Joan is speaking with Kristen Whitney Daniels. Kristen serves as the Assistant Director of The Federation of the Sisters of Saint Joseph. The Federation represents all the Sisters of Saint Joseph of the United States who share a common founding. She is also a fierce healthcare advocate who advocates with T1International, a not for profit organization that advocates for people with type 1 diabetes. She has testified before state and federal government and was even a guest at the State of the Union. Please welcome Kristen.
Joan: Today we are thrilled to welcome to Just Politics, Kristen Whitney Daniels, the Associate Director of the U.S. Federation of the Sisters of St. Joseph in Brentwood, New York, and one of our partner riders on this year’s Nuns on the Bus & Friends. Kristen, welcome to Just Politics.
Kristen Whitney Daniels: Hi Joan, thank you so much for having me. I’m delighted to be here.
Joan: Wonderful. So before we begin, Kristen, can you please tell our listeners just a little bit about yourself, including your work with T1 International’s Federal Working Group.
Kristen: Yeah, I’d be happy to. So some of my work is with the Sisters of St. Joseph. I work with the national organization. I work on communications. I work with youth ministry and also helping out with some of our justice initiatives.
But my passion project has really been volunteering within the disability and type 1 diabetes community. For the last five years, I’ve been a part of T1International, which is an organization that advocates for affordable and equitable access to insulin. And one of the main things that I really love about volunteering with this organization is that we don’t accept any pharma money or any money from organizations that would change our voice when we’re advocating.
So, I have held various roles. One of them was the chapter leader for Connecticut Insulin for All, which I was very proud of our work there. We passed one of the most comprehensive bills for capping the copay cost of insulin and diabetes-related supplies. But I’ve also been working as the co-lead of T1International’s federal working group. So I’ve been working on federal policy as well. And I’ve been doing this role for about two years now, working with various legislators on anything from patents to price caps to working on the Medicare negotiations. So, I’ve been busy!
Joan: You certainly have. Well, that’s wonderful. It’s certainly great and important work.
So, as you know, NETWORK has been working on ensuring equal access to affordable, quality health care for everyone for a very long time. And as part of our elections work this year, and actually in previous years, we utilize our Equally Sacred Checklist where we advocate for the freedom to be healthy.
In your introduction just now, you mentioned that you are a T1D advocate. So tell us a little bit more about what it means to be a T1D advocate and why reducing the cost of prescription medications is so important.
Kristen: For me, it is so important that we center the voices of folks who are most impacted by legislation and policy. And for me, that’s why I’ve felt so passionate about working this year. I’m a type 1 diabetic myself. I have been for the last 18 years. But I’ve also been forced to ration insulin. And that is the practice of cutting back on how much insulin I need, in order to really afford my insulin. So that means keeping my blood sugars very high, not dosing. And that’s because I’ve had inadequate health insurance in the past. And also because the cost of insulin has been so high. When I was rationing, I got quoted $2,400 for my supply of insulin. And that was more than my entire stipend for that month.
Joan: Oh my gosh.
Kristen: I know, yeah. It’s obscene how much a medication that’s been around for a hundred years costs. It costs about $3-6 to manufacture this medication. And yet, it costs over $300 for a single vial of insulin. And for diabetics, especially type one diabetics, insulin is our lifeblood. Without it, we don’t survive to see the next day.
And so, I call that kind of like my turning point moment. I didn’t know what to call it. I at first was mostly ashamed of the fact that I couldn’t afford it. I was 26. I figured I was old enough and wise enough to figure out how to navigate the system. And why couldn’t I? It was really like a shameful point for me that I needed to go to a community health center, which eventually was able to get my insulin for only $14. Thank God for them. But it felt like a personal failing until I was able to connect with T1International on Twitter, as we do with social media nowadays. And they had said the word rationing and that people were experiencing it across the country. The estimates are that like one in four people have rationed insulin. And to me, that is unacceptable in a country, and anywhere, that we would have people rationing insulin.
And so that really spurred my work. And, it’s not just insulin. It’s, you know, for even diabetics, it’s all these other related supplies. But the American public in general is facing these high costs that are forcing them to make decisions between food, going to college, getting a car, what jobs to work… we’re forcing people into jobs with better health insurance where they might be miserable, but they know that they have stable health insurance. So I’m really passionate about making sure that people have access, the freedom to be healthy.
Joan: Well, that is so important. And you know, 10 years ago, NETWORK was instrumental in passing the Affordable Care Act. A decade later, we’re still working on affordable health care—because of stories like yours, people who need medication, people who need health care and are in many instances unable to afford to get it.
And so, clearly change happens slowly. We often remind people that advocacy is long haul work. And because of this, it’s important to have a supportive community. People around you that you can hold up or can hold you up when the goal seems so far away. And I’m sure at one of those moments when you were thinking, ‘I’m inadequate to handle my own health care,’ you really needed some people around you to help you to move past that. So what kind of support have you had along the way? And have other advocates or your family and friends supported you in the work that you do?
Kristen: Yeah, I really first want to just thank the NETWORK for the work that they have done on this. I love telling folks that I know in all of my advocacy circles about NETWORK and the work that they’ve done on the Affordable Care Act. That’s usually how I introduce it to people who are not in the faith community, because that really saved me up to the age of 26 when I aged off of insurance. And that’s when I started rationing. And that’s when we see it, in a lot of different communities. And, you know, we’re still fighting for the Affordable Care Act and making sure those provisions stay today.
Joan: Yes, we are!
Kristen: Yes. And I would not be here without my community. And I mean, there’s so many different parts of my community. My family and friends support all of the work that I do. And, you know, part of that means me not showing up to certain things or being on late night calls until like 9 or 10 PM and, you know, working weekends a lot of times to make sure that things get done.
But the disability community and the insulin for all community… there’s just something special about this common understanding that is really hard to explain to people who don’t have, maybe, chronic disease or rely on a medication to live. Because there is this fear that is always behind you, like, what if tomorrow I lose my job and I won’t have access to insulin again? Like, where will I be?
And, advocacy is tough work. There’s no way around it. And there’s a special kind of toughness to working on advocacy that directly impacts your life. It’s what makes our work special, but it’s also what makes our work tougher, knowing that at the end of the day, whatever policies are passed or not passed, like that directly impacts my life. And we can hold each other in that. We support each other. We make sure that we have self-care and, you know, sustainable advocacy.
I really advocate on sustainable advocacy, making sure that we’re taking care of each other first because my hope and my sustainability doesn’t center around policy wins. Because if I did, I would have left the work a long time ago. We need to find other successes, other measures for success. And sometimes that’s saying, you know, we successfully wrote an op-ed that was published, or we had 10 people at a meeting who are new and learned about this issue and are going to continue. And so, we’ve kind of reframed that because a lot of people only see like what’s in the newspaper, what’s happening on social media, but there’s so much behind the scenes that goes into community support.
Joan: I’m so glad you said that because, you know, in the work that we do, it’s often difficult to explain to people exactly, you know, not just what it takes, but why we’re doing it. But there are real people like you who are affected by public policy and particularly by federal public policy. And so we try to keep that front and center as we do the work that we do. We try to make that front and center in our conversations with policymakers as well. So thank you for bringing that forward for us.
So Kristen, let’s pivot just a bit. As our listeners may have heard, NETWORK is hitting the road again for this election cycle with Nuns on the Bus & Friends. And you are one of the friends that will be joining us as a rider! And we’re so happy for that. Why are you excited to be on the bus this year and what do you hope to see and experience?
Kristen: I am so excited and just so honored that I would be asked to be on the bus! This sounds silly… One, I have always dreamed of being on a tour bus. It’s been like a little kid dream that I’ve just wanted that. And I remember seeing Nuns on the Bus when I first started working at the Federation six years ago and thinking how cool the whole idea was. The branding is so great, and the idea of, one, breaking down these barriers between sisters and the public. I live in the Catholic world, I live in the sister world, but I forget sometimes that this is not what people are used to seeing, that there’s sisters on the forefront of these issues and that they’re doing work behind the scenes that I don’t always know about and most people will never hear about. So breaking down those silos and bringing that to the public and showing that yes, there is this Catholic social teaching, there are people who care so deeply about everyone and want to make a change… I thought it was the coolest thing ever. And I was like, maybe one day I can go to an event or maybe I could even like walk on the bus.
So the idea of being one of those friends on the bus is like a dream come true. It really is. I know that might sound silly, but it’s just so surreal to be thinking that I’m joining everyone this fall! And it’s an amazing lineup. Like I said before, I feel so honored to be among people who have been doing this work for ages and eons and have kept at it.
Joan: Well, we are so excited to have you with us. Your voice is really important. And so I’m glad that it’s going to be a win-win experience for you.
Kristen: Yeah, and I’m really excited to meet people in the communities. I don’t always get to do that. Working at a national organization, you know, I sometimes get to travel to the communities and that’s some of my favorite work. So being able to do that, meet people where they’re at, talk about such important issues and you know, having these honest conversations… I think too often in the Catholic Church, we have these taboo topics that we’re told we’re never allowed
to discuss. And instead of pushing those to the side and having people have to think about it by themselves, we’re saying, no, let’s discuss this together. Let’s talk about it. Let’s bring it to the forefront. And so I’m so delighted to be part of that.
Joan: That’s so important, thank you so much.
Well, as we conclude our interview, Kristen, it’s been wonderful talking with you this morning. We’re asking each of our guests as we finish this season, what gives you hope? I know this is a time when each of us has to pose that question to ourselves. So what gives you hope?
Kristen: That is such a great question. It is such a tough question, I think, especially in the advocacy world. And I think it’s a great question that we should be asking ourselves every day, because if we don’t have hope, it’s sort of the idea of, okay, well, why are we doing this?
You know, I have a nephew and a niece and a nephew on the way. And for them, they’re kind of my guiding light of making sure that I leave this place better than how I received it. And making sure that they have a future, period, but also a good future moving forward.
But, you know, in terms of what keeps me going, what gives me hope is trying to approach things with awe and wonder and openness. That can sometimes be really difficult. And in advocacy work, a lot of it is based on anger and frustration and pain. And I also have to remember that there’s a humanness to this.
Joan: Yeah, the advocacy means something important to people’s lives.
Kristen: Yeah, it’s important to my life. It’s important to other people’s lives. And I have to remember that this is such a beautiful gift to be able to do this and to be in a safe spot. You know, I have health insurance right now. I am able to afford my insulin. And so I kind of view it as paying my way forward, making sure that nobody else is impacted.
And I also see so much resiliency in the generations below me. I don’t know exactly how we label all the generations following the millennials, but they’re so active. They, when I get to work with them, I’m just, again, in awe. I’m like, yes, you all are so much more informed than I was in high school and are ready to make the good change. And I’m ready to work alongside of them, people below me, people above me, people in my direct community, so that we can work together for a better tomorrow and a better future.
Joan: Wonderful. Kristen, it’s been such a delight to talk with you. God bless you for the work that you do. It’s such important work and your voice is so important and we are again really excited to have you with us on our Nuns on the Bus & Friends tour this year.
Kristen: Thank you so much, Joan. I appreciate it and I cannot wait to see you this fall!
Eilis: And that wraps up our discussion for today. The conversation about the freedom to be healthy is ongoing and crucial.
Joan: Absolutely, Eilis. The high cost of prescription medications and the influence of Big Pharma are barriers we must address to ensure everyone has access to the health care they need.
Colin: It’s a stark reminder that health care is a right, not a privilege. We all have a role to play in advocating for a system where no one has to choose between their health and their basic needs.
Eilis: We hope today’s episode has shed some light on these important issues and inspired you to take action. If you want to dive deeper into this topic or find resources to help you get involved, check out the links in our show notes.
Colin: And don’t forget to subscribe to Just Politics on your favorite podcast platform so you never miss an episode.
Eilis: You can also follow us on social media for more updates and engaging content. We love hearing from you, so feel free to share your thoughts and questions with us.
Joan: Thank you for tuning in to Just Politics, where we discuss topics at the intersection of faith and justice.
Colin: Until next time, stay informed, stay engaged, and keep advocating for a just world.
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