Diabetes Advocate Quinn Nystrom Running for Congress

Quinn is a longtime type 1 who’s been vocal on the issue of insulin affordability in recent years. Her efforts began as a teenager, when she wrote a diabetes book, and during her youth she spent much of her time contacting federal lawmakers about important related topics.

Now, she’s a lawmaker in the making. We were thrilled to speak with her at length recently to get the full story:

Hi Quinn. First off, after so many years of grassroots advocacy, can you share what pushed you to run for a seat in the U.S. House of Representatives?

To be honest… in summer 2019, I got a call from some political strategist friends of mine, who asked me (about running). I at first laughed because I thought they were joking, but then we talked about it. I thought about all of the phone calls and emails I get, and all the times I’ve been lied to by an elected official… So, even if it was an uphill battle, even if there’s only a small chance that I can win, I cannot let down the Diabetes Community. I have to take this chance to get off the bench and try. That’s what pushed me over the edge, to decide I was going to run.

Of course, this is not just about insulin or diabetes. This is about… the high cost of prescription drugs in this country. It’s personal to me, my brother, and all of us with diabetes. But I hear from people all the time about struggling to afford the EpiPen, medicated eye drops, cancer drugs, psychiatric drugs, the list goes on. I feel like people need my strong voice and advocacy experience as a member of Congress.

Let’s back up for a moment, to your diabetes diagnosis…

My diabetes story starts when I was 10 years old, in 1996. My parents brought my older brother and me into the living room, and told us that our younger brother Will was in the local hospital. He was in preschool at the time, and he’d been diagnosed with type 1 diabetes.

To be frank, I didn’t know anything at that point about diabetes other than my limited knowledge from reading about The Baby-Sitter’s Club book series’ character Stacey, who had type 1. So we went and met Will in the hospital, and I sat with him on the bed and made a promise to him that I’d do whatever I could to help find a cure for diabetes, and help improve his life with diabetes.

Obviously, as a 10-year-old girl, I didn’t know exactly what that meant. But I was determined to do what I could. So starting early, I was knocking on doors in my small Minnesota town raising money and taking part in the annual walk for diabetes. I also dealt with the ignorant comments from people in school and out in public: too much candy, didn’t exercise enough, and those types that we all hear. I started going into classrooms to talk about what diabetes was and wasn’t.

How did it feel to be diagnosed after your younger brother?

As a 13-year-old girl, I sort of thought this was Will’s disease and I wasn’t really ready for that as an adolescent girl. My focus every day was to blend in, as a teenage girl. The last thing I wanted was this chronic, incurable illness where now I’d be forced to go down to the nurse’s office at lunch, before and after gym class… to be this “special needs” student.

I didn’t want that, and I was resentful and mad at everyone. I really went into a deep depression for about a year. What changed that was my mother deciding to send me to the diabetes camp called Camp Needlepoint, about a year after my diagnosis. At age 14, I didn’t want to go to a medical camp where everyone was diabetic. But it changed my life, and it was the first time I was around other people and teenage girls just “like me,” who’d learned to accept this illness and get on with their lives.

It was a really powerful lesson for me. We may not have had a choice in getting diabetes, but we have a choice in how we were going to react to it.

You ended up writing a book about diabetes as a teenager?

Yes. When my brother and I were both diagnosed, I had looked for a book that would better understand what it’s like to actually live with type 1 diabetes. I didn’t know anyone aside from my brother with type 1, growing up in a small town in Minnesota. That always frustrated me. So when I got a bit older and was more comfortable in speaking out about diabetes, I was complaining to my mom about this, and she said, “If you’re going to complain, why don’t you just write the book then?”

I’d been wanting to for a while, so I did that. The title, “If I Kiss You, Will I Get Diabetes?” is inspired by my senior prom date who actually asked me that question. You don’t have to buy the book to know that he and I are not together…

How did you get started in politics?

Going into college I was really set on a career in diabetes advocacy. I had started doing federal advocacy work at 16, when chosen as National Youth Advocate for the ADA (American Diabetes Association). I’d really fallen in love with that work and working with the lobbyists alongside the ADA, so that was really the career I was looking toward. I majored in communications and minored in political science and that’s what I thought I would go into.

What’s it been like stepping up to run for a national seat?

There is of course a big learning curve when you decide to run for Congress. For instance, this district is very large and diverse… with agriculture and resort communities. You’re trying to figure out how to best represent and listen, to take in people’s issues and best represent everyone.

Knowing that you’re not going to please everyone, you need to be fair and try to be their voice to elevate the issues. That’s something that has always been important to me: in figuring out how to allow more people a seat at the table, even in just being a candidate.

Healthcare is my bread and butter, so people often say to me that they recognize I can go in and make a difference on that topic, but they also want to be confident in me on education, labor issues, environment, rural broadband, and so many other topics. I’m very aware of this. I don’t think you can be an expert on every topic, so I need to surround myself on subject matter at first to learn from people and get up to speed quickly on those issues. That allows me to learn about needs in our district, and how to address them.

Can you expand on the insulin pricing and #insulin4all advocacy you’ve been part of?

Just before finishing my term at the local level, I was knee-deep in insulin affordability advocacy work on the state and federal levels. That was pretty much my full-time job. People would contact me all the time, about not being able to afford insulin.

They were literally rationing and dying because of it, and I was doing all in my power to keep these people alive. It felt like I was beating my head against a cement wall, because I couldn’t believe that we live in the most prosperous country in the world, but we have people dying because of the medication they need to survive is unaffordable. The price of insulin has increased 1200 percent in 20 years, according to experts, and it’s such a black-eye that we allow this in our country.

I led the #insulin4all chapter in Minnesota and was working alongside the best advocates I’ve ever worked with here, including several trips to Canada and one with Sen. Bernie Sanders in 2019 when he was a candidate for president.

How did the politicians you met with react?

In spring 2019, I met with my recently elected Rep. Pete Stauber (R-MN) about this issue. He was a Republican, but I was hopeful. So I asked him to sign on to legislation to lower the price of insulin, and he said yes.

He told me he would keep a campaign promise of protecting people with preexisting conditions, and he looked me in the eye and promised he would. My third and final ask was for him to hold a patient roundtable on healthcare back in our Congressional district, because there are so many people who can’t afford their healthcare and can’t afford to come to D.C. to meet with him. He said he would do that, too. He even told me his nephew has type 1 diabetes, and his best friend had died of [a complication related to] type 1, so this disease really impacted him. So I felt like we’d had a great meeting and that we had a diabetes advocate in him, and I left there very hopeful.

Unfortunately, shortly after, he voted against protecting people with preexisting conditions, against the prescription drug prices lowering legislation. I followed up multiple times, but he wouldn’t hold a forum for people on healthcare costs. Instead he did hold a closed-door meeting with healthcare execs, who coincidentally funded his campaign.

What about raising the money needed to run for office?

I’ve had to learn how to fundraise. That’s always the elephant in the room. We have a system where you do need to raise a lot of money, and that’s new to me. I’ve grown up raising money for diabetes organizations, but never to this scale. That’s been a whole new learning experience for me, at this level.

What impact are you expecting coronavirus to have on the election?

Because of the pandemic, so much has changed. The national conventions have been moved virtually and there are email and mail-in ballots being used, with a 2- minute video that everyone would get to see. All of that’s unique to campaigns now, because we are all grounded and no one knows if we’ll be doing parades or even door-knocking like we normally would. Our bread-and-butter for fundraising has been in-person fundraisers, which we haven’t been able to do. It will be very interesting to see how the rest of this election season plays out.

We also saw the big news about Minnesota passing the first-of-its-kind Alec Smith Emergency Insulin Act. Can you talk about that?

What a tremendous achievement to see that get over the finish line and have the governor sign that legislation, especially in the midst of a pandemic. There’s so much difficulty getting any bill through, because of partisan divides. Both sides had opposing ideas and couldn’t agree, and there was a lot of push and pull before finally getting to a bill that could be passed.

We ended up having to compromise, in that Pharma was paying for the insulin in the program and that instead of a 90-day emergency supply like the DFL wanted, the Republican bill included a 30-day supply. At the end of the day, to get a bill passed, a lot of concessions were made.

Now, I don’t think Pharma companies are evil beings. But I believe the price is too high and they are a part of the problem. I’m grateful we got a bill passed because it’s going to save lives and ultimately, that’s what we care about.

We wanted progress over perfection. This is a first-of-its-kind in the country, and I hope it shows other states that they can get some form of this bill passed. I also feel we can come back and build upon the success of this bill, offering improvements and doing even better. I’m very proud of the diabetes advocates in Minnesota who never gave up.

What do you think of the insulin copay caps being passed now in states across the U.S.?

I do think these are good steps, and they do help people. In Minnesota, we’ve wanted to put this issue in the press and pressure people on all sides. It’s not just pharmaceutical companies, it’s also pharmacy benefit managers (PBMs) and insurance companies. We took the approach of applying pressure to the entire supply chain.

As to price-caps, we got three Minnesota-based insurance companies to agree to do monthly insulin copay caps, for $20 or $0 a month. Now, again, I think that is great news and I’m included in that because I get my insulin through an Affordable Care Act (ACA) plan. Last year, my supply of Novolog was $579 per month; but this year, it was $25.

That’s an improvement, but we also know that these copay caps only impact a small amount of people. As an insulin affordability advocate, my greatest concern is that these copay caps and these Pharma assistance programs — while they do help people — are temporary, and you have to jump through hoops to get there.

The ultimate goal is to get insulin down to a reasonable price so that people don’t have to rely on a program or a temporary copay cap. We need to be working toward making insulin affordable every single day for everyone, without these programs or discount coupons. That’s my goal and why I am running for Congress.

If elected, you would join two others in Congress who also have type 1 diabetes. What do you think about that?

That’s really exciting to see and it’s long overdue for the Diabetes Community — to have people on the ‘inside,’ who can champion our causes. Sure, there were some who had personal diabetes connections with family within Congress and on committees, but they weren’t as vocal about it earlier on… but they did not resonate as much and weren’t leading the charge on these issues.

For so many years, I felt like I was having to pound the drum of diabetes when going to D.C. talking to elected officials and begging for diabetes programs or funding. It was also like begging these officials to sign on. Having those adults with type 1 diabetes in Congress now is so important and it feels like full circle for me.

On a personal note, did we hear you were also recently married?

In our vows when Paul said, “…in sickness and in health…,” I knew he wasn’t just saying those words, he meant every word. He knew the challenges I have faced as someone with type 1 diabetes physically, mentally, and the financial strain it’s put on me. He’s stood by me, and didn’t think twice about running to a courthouse to marry me early despite all of that. That’s all I’ve ever dreamed of for a husband and the perfect “type awesome” for me.

Congrats, Quinn! And thank you so much for taking the time to talk with us. We wish you luck leading into the key election season as the year progresses.

This content is created for Diabetes Mine, a leading consumer health blog focused on the diabetes community that joined ishonest Media in 2015. The Diabetes Mine team is made up of informed patient advocates who are also trained journalists. We focus on providing content that informs and inspires people affected by diabetes.

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