A Donor Exchange Program Saves a Life | Stuart Miller
In this episode, Kerri Fitzgerald speaks with Stuart Miller about his health journey with IgA nephropathy. Stuart was diagnosed with the rare kidney condition before there were any FDA-approved treatment options. In 2018, he underwent a kidney transplant through a donor exchange program. His incredible wife was one of the donors who made this possible. Stuart is now the Director of Strategic Planning and Government Affairs for the IgA Nephropathy Foundation, a patient advocacy group dedicated to finding a cure for the condition. Stuart talks about the importance of advocacy efforts to move the needle for rare diseases.
Kerri Fitzgerald:
Stuart Miller, welcome to My Hero 360.
Stuart Miller:
Thanks, Kerri. Nice to meet you.
Kerri Fitzgerald:
Great to be here with you. Stuart, you are the Director of Strategic Planning and Government Affairs for the IgA Nephropathy Foundation. We’re going to talk more about the Foundation in a little bit, but I first want to discuss how you came to work for the organization. You were diagnosed with IgA nephropathy over 15 years ago. Can you talk about the experience of learning that you had this rare condition?
Stuart Miller:
I went through a series of doctors, primary care physicians, who noticed that I had a small bit of protein in my urine, but didn’t think it was an issue. Over 20 years, I visited several doctors, and they all came to the same conclusion. In 2007, I moved to Atlanta and met a new primary care physician who informed me that he thought there was something wrong with my kidneys and I need to get to see a nephrologist as fast as I could. That’s when I got the diagnosis.
Kerri Fitzgerald:
For people who may not have heard of IgA nephropathy before, how would you describe it, and what are some ways that it can impact a person’s day-to-day life?
Stuart Miller:
IgA nephropathy is a rare kidney disease. It really causes your kidneys not to filter as well as it normally would. For a lot of people, the emotional part of getting the diagnosis is worse than the actual physical symptoms that you receive. A lot of patients notice some fatigue, brain fog, flank pain, and just overall concern about their general health and what the future’s going to look like.
Kerri Fitzgerald:
I think getting any sort of diagnosis is probably a very scary thing to try to confront and understand how it might impact your life moving forward. How have you managed your condition over the years, and are there any treatment options available for this condition?
Stuart Miller:
When I was diagnosed, there were no treatment options other than fish oil, which didn’t really have any effective results for me. I modified my diet a little bit—less sodium and a little bit less protein. Then also just general live a healthier lifestyle than I had previously.
Right now, there are 5 treatment options on the market, so there’s a lot more hope for patients when they get diagnosed.
[Editor’s note: The FDA-approved treatments indicated for IgA nephropathy are Filspari (sparsentan), Tarpeyo (budesonide), Fabhalta (iptacopan), Vanrafia (atrasentan), and Voyxact (sibeprenlimab-szsi).]
Kerri Fitzgerald:
Absolutely. Another part of your treatment journey is in 2018, you underwent a kidney transplant from your wife via a donor exchange program. For people who are not aware, can you explain what a donor exchange program is?
Stuart Miller:
In order to be a kidney donor, a living kidney donor, you have to be a match to the patient who’s receiving the kidney—a blood match and an antigen match. In the case of my wife, she was willing to donate but was not a match for me. There was a woman in California who needed a kidney and had a donor that was not a match for her. I received a kidney from that donor, and the woman in California received my wife’s kidney. That was all set up through our transplant center.
Kerri Fitzgerald:
What a special opportunity for your wife to be able to make this possible for you. How did the 2 of you discuss this option and ultimately make the decision?
Stuart Miller:
There wasn’t a lot of discussion, I guess. My wife was very courageous and decided to help me out. It’s something I’ll never forget for the rest of my life.
Kerri Fitzgerald:
That’s amazing. What happened that ultimately required you to get to the place where you needed to do this transplant?
Stuart Miller:
My kidneys continued to decline. In 2016, my kidney function was reduced to about 21%, which is a number that allows you to get on the transplant list. Luckily for me, I got a preemptive transplant. I got my transplant before I had to go on dialysis. When I had my transplant, my kidney function was only at 11%.
Kerri Fitzgerald:
Now post-transplant, you are recovering, your wife is recovering as well. What was that period like?
Stuart Miller:
It was a little interesting. We had just acquired 2 new puppies about 3 months prior to the day as well.
Kerri Fitzgerald:
Oh, wow.
Stuart Miller:
It was pretty wild in the household. About 3 weeks after my transplant, I got a rejection. I had to go back in the hospital for 5 days. We were very lucky. We had lots of friends and family to help us out. One of the things is that you’re not allowed to drive for 90 days post-transplant, and just your lifestyle changes quite a bit. We were very lucky to have friends in a community that helped us out.
Kerri Fitzgerald:
Absolutely. That’s a game changer for sure. You said you had a rejection soon after. What did they do to rectify that?
Stuart Miller:
I had to go back into the hospital, and they give you a treatment called thymoglobulin. It’s a drug they can only give you twice in your lifetime, so they’re very careful about how they use it and when they use it. It’s very similar to a chemotherapy, and it worked.
Kerri Fitzgerald:
That’s great.
Stuart Miller:
It set my kidney recovery back about 6 months, but it definitely worked for me.
Kerri Fitzgerald:
Wow, that’s great. I want to talk about the Foundation now. As I mentioned, you work for the IgA Nephropathy Foundation. What first drew you to the organization, and how did you get involved?
Stuart Miller:
In 2019, there was an event in Washington, DC, called the Externally-Led Patient-Focused Drug Development Meeting, which was a meeting for IgA nephropathy patients, the FDA, and pharmaceutical companies. I was invited to attend. That was 2019, and that was the first time I’d ever met anybody that was living with IgA nephropathy when I went to that meeting. It was kind of an eye-opener for me to see other people and how they were dealing with their journey. Just to meet people made me feel a little bit better. It was at that event that I met Bonnie Schneider, who’s the executive director of the Foundation, and I asked her if there’s anything I could do to help. I felt like I really could, after having my transplant, pay it back a little bit, and she said, “Well, we’ll be in touch.” That was almost 7 years ago.
Kerri Fitzgerald:
Wow. You said that was the first time you met other people with the condition. You were living with it for, what, almost 10 years by the time…
Stuart Miller:
12 years. It was 12 years before I met anybody else. It is just an eye-opener when you meet someone who’s going through the same journey that you’re going through and understands it. One of the things about IgA nephropathy is a lot of people, when they have it, they don’t look sick. Your friends and family don’t understand how sick you really are, what you’re going through. When you meet someone else who understands that journey, it just makes it a little bit easier.
Kerri Fitzgerald:
We hear that a lot in people that we speak with that the finding a community or a foundation or a patient advocacy group really makes a difference. What is the mission of the foundation, and what are some of their more near-term goals?
Stuart Miller:
The mission of the Foundation is to create a sense of community for the patients and to try to educate them and help them become their best advocates. The Foundation has grown a lot over the last 22 years, in particular the last 5 years, with the addition of the therapeutics that are on the market. More and more people are getting diagnosed. We’re just trying to find those people. We’ve also introduced a new program called Go Global. We’re trying to spread the Foundation to other countries across the world instead of just the United States.
Kerri Fitzgerald:
Wow. You said more and more people are being diagnosed. Would you say that’s due to increased awareness or is just the incidence going up?
Stuart Miller:
I think it’s a combination of both. For many, many years when you went to see a nephrologist, if you had a protein leakage in the urine, there really wasn’t much they could do for you. Now that they know that there’s opportunities for therapeutics that could help you, I think they’re being a little bit more careful with their diagnosis and they’re diagnosing more people because they can help them.
Kerri Fitzgerald:
That’s great. What would you say has been an exciting accomplishment that you’ve seen the Foundation reach during your time there?
Stuart Miller:
I think the biggest accomplishment we have is a patient conference we call SPARK, which is our annual patient conference. This year, we’re expecting almost 400 patients and their family members to get together for 3 days, learn about what it’s like to live with IgA nephropathy and meet other people and find that sense of community. It’s our biggest event of the year, and it’s by far our most well-attended event that we do.
[Editor’s note: SPARK 2026 takes place July 24-26 in Atlanta. Learn more.]
Kerri Fitzgerald:
That’s great. Where can people learn about that event and more and everything that the foundation is doing?
Stuart Miller:
The Foundation has a great website. It’s just www.igan.org. For those who want more information, they can always send an email to info@igan.org.
Kerri Fitzgerald:
Excellent. As part of your role at the Foundation, you are heavily involved in advocacy work. What are some areas of advocacy that you are personally trying to advance?
Stuart Miller:
There’s 2 pieces of legislation in the United States Congress and the Senate. The Living Donor Protection Act is one of them. That’s one of our biggest bills that we sit behind and we stand behind. It’s to increase the road, erase the roadblocks for people who are living donors who want to become a living donor right now. If you are a living donor, you can be discriminated against for life insurance or long-term care. You don’t qualify for FMLA, and you could lose your job. Really hard to find a living donor, number 1. Number 2, if you put all those roadblocks in the way, it makes it even more difficult for people who are courageous enough to make that decision, but afraid there’s going to be financial consequences. We’re trying to erase those roadblocks.
Kerri Fitzgerald:
Wow. I didn’t know that. That’s very interesting. You’re hoping to do away with some of those requirements through that legislation?
Stuart Miller:
Yes. The Living Donor Protection Act would eliminate all those roadblocks. Patients could not be discriminated against for being a donor. As I mentioned, it’s hard enough to find a donor when you’re diagnosed or you need a transplant to be able to find people who are, again, courageous enough to make that decision, but can’t afford to lose their job or be out of job for 3 weeks or increase life insurance. That would hopefully increase the field quite a bit for people who need a kidney donor.
Kerri Fitzgerald:
Absolutely. In addition to that legislation, what do you think are some other important areas of need for patients, particularly with this condition?
Stuart Miller:
There’s another bill called the New Era Kidney Act, which is designed to create some more appropriations funding for Congress to educate people more about what it’s like to live with kidney disease and to get early screening.
Kerri Fitzgerald:
How would you say you’ve seen advocacy move the needle on health issues?
Stuart Miller:
I think it’s really important for legislators to understand the patient’s point of view and to hear their patient’s stories. It makes a big difference when we go on Capitol Hill, the foundation sponsors a Hill Day once a year, and we typically take about 35 patients to Capitol Hill where they can meet with their congressmen and senators. It makes a big difference to hear the patient’s story from those staffers and from the congressmen and senators and understand directly and know that we have skin in the game, but we’re not some official lobbyist. We’re just patients trying to share our stories.
Kerri Fitzgerald:
I imagine sitting across from someone and a real person may change something from this amorphous concept into, oh, this is actually going to impact this person or this constituent.
Stuart Miller:
It makes a big difference to be able to meet with them in person and for them to understand your story and how it impacts your life. It’s much different than receiving an email from someone or a text message or anything like that.
Kerri Fitzgerald:
For those who may be interested in getting involved in the advocacy world, what advice or recommendation would you give to them?
Stuart Miller:
I would say join an organization and become an advocate. We have a group of that we call ambassadors that work for our foundation. I’m actually an advocate for the National Kidney Foundation and also ambassador for the American Association of Kidney Patients. Those organizations do a great job of providing advocacy opportunities for their patients and families.
Kerri Fitzgerald:
Excellent. Stuart, we like to conclude our My Hero 360 interviews by asking everyone the same question. What would you tell your younger self, knowing what you know now?
Stuart Miller:
I think the biggest lesson I learned was to ask more questions and to be more educated about my disease. Once I got the diagnosis, I was kind of scared and didn’t take the time to learn and be educated and ask the right questions and be able to know what to talk about with my physician, and I think that’s really important.
Kerri Fitzgerald:
I think feeling comfortable advocating for yourself is really good advice for anyone who’s facing a new or ongoing health condition.
Stuart, I want to thank you so much for speaking with me today, for shining a light on this rare condition and sharing your experience navigating your diagnosis, care plan, and now the advocacy work that you’re doing to advance the field for others with IgA nephropathy. Thanks again.
Stuart Miller:
No problem. Thank you for asking, Kerri.
Connect with the IgA Nephropathy Foundation:
https://igan.org/
About My Hero 360: At My Hero 360, we honor, celebrate, and connect heroes worldwide. By sharing their stories, we aim to inspire and provide hope for humanity. Follow us to hear more incredible stories of unsung heroes who make a difference in the world.
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