Gaia Coppock, MD

, presented at GlomCon 2026, found most patients want more than reassurance from their care team. They want a clear roadmap for what to expect next.

Personalizing IgA Nephropathy Care Conversations, With Gaia Coppock, MD

"Most people with a rare kidney disease really want to know where we are and where we are going," said Gaia Coppock, MD, associate professor of clinical medicine in the University of Pennsylvania's Division of Renal-Electrolyte and Hypertension and director of the Glomerular Disease Clinical Research Program at the Hospital of the University of Pennsylvania, in an interview with HCPLive. "Even being able to define that, be open about it, and give a roadmap for what might happen if that is where they end up going can be helpful. It takes away some of the fear."

The survey, sponsored by Vertex Pharmaceuticals and presented in Maui, Hawaii, combined 20 qualitative interviews with a 106-patient quantitative survey to characterize unmet communication needs across the IgAN journey.¹

Coppock said her academic practice gives her more time than many nephrologists have to walk new patients through what to expect, even when a first visit only partly sinks in. "I like to explain why I'm making the choices that I'm making," she said. "People really want to know what's going on in their bodies."

She also involves patients directly in decisions, including lifestyle changes, so they can take ownership rather than simply being told what to do. For online information, Coppock points patients toward vetted, IgAN-specific resources such as the IgA Foundation, IgAN Alliance, and NephCure, which offer support groups, patient forums, and conference listings.

Even with a rare diagnosis, Coppock said most patients want an honest picture of where the disease could go, including the possibility of progression to kidney failure or transplant, rather than reassurance alone. This preference echoes prior research, which has identified similar unmet information gaps among patients with IgAN more broadly.²

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.

Vasilica C, Oates T, Clausner C, Ormandy P, Barratt J, Graham-Brown M. Identifying information needs of patients with IgA nephropathy using an innovative social media–stepped analytical approach. Kidney Int Rep. 2021;6(5):1317-1325.

Editor’s Note: Coppock reports relevant disclosures with 

Videos

Why patients with IgA nephropathy want to understand their disease, not just follow instructions.

One interesting take-home point is how nonspecific some of the presenting symptoms can be. People with rare diseases tend to have a lot of false starts before something is actually found, because common things being common, it's not the first thing that most people think about.

Closing the Diagnostic Delay Gap in IgA Nephropathy, With Gaia Coppock, MD

Gaia Coppock, MD, is an associate professor of clinical medicine in the Division of Renal-Electrolyte and Hypertension and an attending physician at the Hospital of the University of Pennsylvania in Philadelphia. She directs the hospital's Glomerular Disease Clinical Research Program and its Kidney Biopsy Group, and directs the Lupus Nephritis Program at the University of Pennsylvania School of Medicine. She discussed the findings and what they mean for nephrology practice in an interview with HCPLive.

A poster presented at GlomCon 2026, the annual meeting for glomerular disease specialists held in Maui, Hawaii, put new numbers behind a familiar concern in IgA nephropathy (IgAN): symptom-driven delays between first presentation and diagnosis. The Vertex Pharmaceuticals-sponsored study paired 20 qualitative interviews with a 106-patient survey of the IgAN journey. It builds on 

recent HCPLive coverage of diagnostic gaps in IgAN

Patients most often presented with hematuria or fatigue, symptoms Coppock said are easy to miss or misattribute; hematuria, for example, is frequently mistaken for a urinary tract infection. Abnormal labs, including elevated urine protein (82%) and hematuria (70%), were usually what triggered a nephrology referral, and wait times stretching toward a year can put a patient's diagnosis roughly two years behind symptom onset.

Coppock noted once patients reach a nephrologist, the workup typically moves quickly, but many still described feeling confused after diagnosis and turned to the internet or patient advocacy groups to fill gaps, even though about 85% named their doctor as their primary source of information, and 57% said they would rather get it from their nephrologist specifically.

The survey also found a gap between what patients want from treatment and what they feel they're getting: 80% wanted symptoms stopped, but only 49% felt therapy delivered, with similar shortfalls for slowing kidney function loss (78% vs 50%) and delaying dialysis (75% vs 50%). Closing this gap carries real stakes: time-averaged proteinuria above 0.5 g/day has been linked to a higher risk of kidney failure in adults with IgAN.²

Her message to primary care: even low suspicion for IgAN warrants a urine check and follow-up, because earlier recognition offers more treatment options and, in her view, more hope for preserving kidney function.

Shah A, Gagnon-Sanschagrin P, Bedard J, et al. Time-averaged proteinuria ≤0.5 g/day is associated with kidney failure in adult patients with IgA nephropathy in the US. Poster presented at: National Kidney Foundation Spring Clinical Meetings; 2026; New Orleans, LA.

A survey of patients with IgA nephropathy shows how nonspecific symptoms and long referral waits delay diagnosis by up to two years.

Gaia Coppock, MD

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