Two proximal complement inhibitors, iptacopan and pegcetacoplan, are now approved — iptacopan for C3 glomerulopathy and pegcetacoplan for C3 glomerulopathy and immune-complex membranoproliferative glomerulonephritis. The SEISMIC summit, held in July 2025 with clinicians and patients, addressed what happens between approval and a patient actually receiving treatment.
It set out three tasks: defining what stops this ultrarare disease spectrum being diagnosed properly and promptly, working out how management changes now that disease-modifying agents exist, and identifying the barriers to equitable access along with strategies to overcome them.
The diagnostic problem is the one that determines everything downstream. C3 glomerulopathy and immune-complex membranoproliferative glomerulonephritis are rare enough that a general nephrology service may see a handful in a career, the distinction between them rests on biopsy immunofluorescence and complement studies, and a patient who is not correctly classified cannot be considered for a drug licensed by classification. For Indian practice the access question is sharper still: the agents are expensive, the licensing position here is not the US or European one, and the realistic near-term gain is in diagnosis — making sure the biopsy is adequately characterised and the patient is registered somewhere that a treatment route can be found.
- Ensure immunofluorescence and electron microscopy are done on biopsies with a membranoproliferative pattern
- Classify C3 glomerulopathy and immune-complex disease explicitly in the report, not as 'MPGN'
- Refer or register rare glomerular disease with a centre that can access trials or named-patient routes
- Check the CDSCO position before discussing these agents as available options in India
Why it matters
A patient who is not properly classified cannot be offered a drug licensed by classification.
Don't overread it
A summit report on access and diagnosis — it does not present new efficacy data for either agent.
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