Diagnosis to Data: What Patient Experience Adds to IgAN Research

Published on: September 10, 2026

A principal healthcare consultant and study co-author shares his own decade-long path to an IgA nephropathy diagnosis and transplant.

Patient experience remains an underused data point in IgA nephropathy (IgAN) research, even as the treatment landscape shifts from broad supportive care toward targeted, disease-modifying therapies.

Byron Wade, a co-author on a new mixed-methods study examining the IgAN patient experience and a principal consultant at American Healthcare Strategies, brings both a professional healthcare background and firsthand knowledge of the disease to the work.¹

The study, presented at GlomCon 2026 in Maui, Hawaii, combined qualitative and quantitative methods to capture how patients navigate diagnosis, treatment access, and disease management, aiming to give clinicians a clearer view of the patient perspective.¹

The Data Behind Wade's Story

Wade's decade-long wait for a diagnosis is not unusual, according to the study he co-authored. The mixed-methods GlomCon 2026 poster, combining 20 qualitative patient interviews with a 106-patient survey, found patients typically waited 1 to 2 years to reach a nephrologist after symptoms began, with hematuria and fatigue as the most commonly missed early signs.¹ It also found a gap between what patients want from treatment and what they feel they're getting: 80% ranked symptom control and preserved kidney function as top priorities, but only about 50% felt those goals were being met.¹

The same data set is the basis for two related HCPLive interviews with Gaia Coppock, MD, associate professor of clinical medicine and director of the Glomerular Disease Clinical Research Program at the Hospital of the University of Pennsylvania:

Diagnostic delay is common in IgAN, particularly when early symptoms are mild or intermittent, and family history can prompt closer monitoring without necessarily accelerating diagnosis. A separate report from University of Pennsylvania nephrologist Abdallah Geara, MD, and colleagues similarly outlines patient and provider perspectives across the diagnostic journey, reinforcing persistent gaps in how patient-reported experience informs everyday clinical care.² Eligibility criteria tied to kidney function have also limited access to newer IgAN therapies for patients diagnosed later in the disease course, leaving a treatment gap for a meaningful share of the IgAN population.

Wade was followed by a nephrologist for over a decade before a kidney biopsy confirmed his own IgAN diagnosis, following years of family history-driven surveillance tied to his sister's disease. He underwent a kidney transplant in 2023, with his wife, Melissa, serving as his living donor, and the two now co-lead the Wade Family Foundation, supporting living donation and IgAN research. Below, Wade shares his perspective on his diagnostic journey, his experience navigating treatment eligibility as a transplant recipient, and his advice for patients newly diagnosed with IgAN.

Q&A: Byron Wade on diagnosis, transplant, and patient advocacy

HCPLive: Can you walk us through your journey of recognizing you had IgA nephropathy, from first noticing something wrong to diagnosis?

Wade: I was followed by a nephrologist for years before I realized I had IgA nephropathy, for about 10 to 11 years. My sister had kidney disease, IgA nephropathy, so I was being tracked, but I never thought much of it. I went to my annual appointments and moved on with my life. It wasn't until fall of 2019 that I noticed blood in my urine, and that was my first real sign I had bigger problems than an annual nephrologist visit. I always tell people my experience is my experience, not necessarily that of everyone with IgA nephropathy. After that episode I was hospitalized for 5 days, but I still didn't follow up with a kidney biopsy. It felt like a single point in time, not enough data to justify an invasive procedure, so I decided to wait and see if anything happened again. Unfortunately, 3 to 4 months later I had the same thing happen again, was hospitalized, and that's when I was diagnosed with IgA nephropathy on biopsy.

HCPLive: Did having a family history change how quickly you were diagnosed or how seriously you took your symptoms, compared with other patients?

Wade: For me personally, the big thing is I work in healthcare, so I always try to take my health seriously. My background started in pre-hospital medicine as an EMT and progressed into administration. I think we all go through phases of life where we view our health differently. In your 20s, you feel invincible, and I think you start taking it more seriously as you get older. I'd say I took it more seriously than most of my peers and most other men my age, but this definitely made me look at it differently. Being followed by a nephrologist isn't normal for a 20- or 30-year-old with no issues at the time, but it was eye-opening when I started seeing signs and symptoms myself. That's when I realized this was real.

HCPLive: What has stood out throughout your treatment and appointments that has contributed to your confidence or preparedness?

Wade: I'm very fortunate to be embedded in the healthcare system, which gave me more inherent trust and the ability to seek out specific providers than maybe some of my peers who aren't in healthcare. When I was diagnosed with IgA nephropathy, there were more questions than answers, even from the medical team. I hope my peers with IgA nephropathy now find a little more hope in the system. That's the reason I got involved in this work, to help other people know there are options now that there are treatments for IgA nephropathy. It's not something you just have to live with anymore. When I was diagnosed, it was just controlling blood pressure with ACE inhibitors and ARBs and sometimes steroids, and now there are actual IgAN treatments.

HCPLive: Since the treatment landscape has evolved so significantly, does your current treatment address what matters most to you and other patients?

Wade: Unfortunately, I was diagnosed on biopsy in 2020, and there were no treatment options available then. When the first treatments came out, whether through trials or approved therapies, I didn't qualify because my GFR, my kidney function, was too low. So I haven't had any treatments. In 2023 I had a kidney transplant, and now I'm not eligible for treatment again. I'm currently in what some people call remission, though not everyone uses that term. IgA nephropathy is still in my other two kidneys, and there's a concern it could attack the donor kidney, which does happen to some patients. Fortunately, that hasn't happened to me so far. I look forward to these drugs being tested not just in IgAN patients now that they're approved, but eventually in transplant recipients too, so we have more options in the future. The hope for me is that we now actually have therapies for people to pursue, and more than one option, because what's right for one person isn't right for another. Unfortunately, I wasn't able to take part in any of these treatments or trials because my IgAN had progressed too far.

HCPLive: What would you tell someone who just got diagnosed with IgA nephropathy?

Wade: The great news is there are options and treatments available to pursue. You're your own biggest advocate, so arm yourself with knowledge. Find a good support system, a family member or friend who can help you navigate the process, because it's a lot to take in. Find providers you feel confident in. If you don't like your primary care doctor or nephrologist, seek out alternative options, and then seek out the right treatment for you. If you don't feel comfortable, ask questions, because I truly believe healthcare outcomes are shaped as much by mindset as by the actual treatment. My wife attends most of my appointments with me, and what she takes away from an appointment with a nephrologist, or in my case also a transplant nephrologist, is sometimes different from what I take away. We put that information together to get a better picture by the end of the appointment. I'll add one more thing: early intervention is key to success. For me, success means keeping people away from unnecessary transplants. Some people will progress too far and need a transplant, or face trauma or untreatable disease, but the best thing you can do for yourself is take care of yourself and try to stay in the stage of kidney disease you're in now. Kidney tissue doesn't repair itself, so you can't go back up the chain, but if you can maintain your current status, that's probably the best outcome versus assuming a transplant is your best option. If you do reach the point where you need it, that's great, but try to preserve the kidney function you currently have.

HCPLive: Was there anything else you felt was important to highlight?

Wade: At the end of the day, it comes down to taking good care of yourself, being diligent, and seeking out treatment and annual exams. A lot of people just forgo going to the doctor annually, and a lot of these symptoms aren't visible until it's too late. Blood work is your best friend.

References

Bensouda M, Wade B, Burns J, et al. IgA Nephropathy Patient Experience: A Qualitative and Quantitative Mixed-Methodology Study. Poster presented at: GlomCon 2026; August 3-7, 2026; Maui, HI.
Geara AS, Chen KB, Simmons W. Patient and Provider Perspectives on the Patient Journey in Immunoglobulin A Nephropathy. Kidney Med. 2026;8(3):101242. doi:10.1016/j.xkme.2026.101242.