When Every Minute Counts: Rethinking aHUS Care in India

This article was written by Linda Burke, one of the senior-most aHUS patient advocates in the world and trustee of the aHUS Alliance Action. This article builds on a discussion initiated by Dr. Manisha Sahay during the webinar held on aHUS Awareness Day in September 2026.

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A Disease That Doesn't Wait

Atypical hemolytic uremic syndrome (aHUS) is a rare, life-threatening blood disorder. For patients, getting the right diagnosis fast can mean the difference between full recovery and permanent organ damage. The good news is that basic lab tests for aHUS are widely available across India. The real problem isn't access to common labs — it's the delay in getting specialized testing done and waiting for results like complement panels or genetic testing to come back. In a disease that can cause rapid kidney failure or damage to major organs like the heart or brain, that delay is life-threatening.

Why Centers of Excellence Aren't Enough on Their Own

India's healthcare system increasingly relies on Centers of Excellence (CoEs) — hospitals or institutes that concentrate top specialists, advanced technology, and rare-disease expertise in one place. For a condition like aHUS, this concentration is genuinely valuable: it means better-trained doctors, cutting-edge diagnostics, and consistent treatment standards.

But CoEs come with a built-in weakness: geography. Most are located in major cities, which is a serious problem for patients in remote or rural regions. Getting to a CoE — and back again for the follow-up visits that rare-disease and clinical-trial care requires — means long travel times, real financial cost, and lost wages. For a patient in the middle of an aHUS crisis, that travel time is exactly what they don't have.

The Hub-and-Spoke Model

One model gaining attention in healthcare planning is the "hub-and-spoke" system, borrowed from aviation and logistics. The idea is simple: keep the most advanced, expensive resources centralized at one main Hub (such as a CoE), while a network of smaller local sites — the ‘Spokes’ — handle initial evaluation, routine care, and triage close to where patients live.

If a spoke-level patient needs more advanced care, in some nations they're transferred to the hub. In India or other nations with limited healthcare resources, this is unlikely. A patient with a suspected diagnosis of aHUS at a rural hospital might encounter a physician familiar with this rare disease, and basic lab tests can be performed locally - but what happens next? 

Here's how the two models compare:

Why This Matters Specifically for aHUS

Applying this model to aHUS could directly address the diagnostic delay that's the real bottleneck today. Rather than requiring every patient to physically reach a CoE for specialized testing, a spoke-and-hub network could allow:

• Local hospitals to draw and ship samples for rapid specialized testing, rather than requiring patient travel
• Faster turnaround on results through better-coordinated logistics between spoke and hub
• Remote consultation with aHUS specialists at the hub while the patient stays close to home
• Local clinics supporting ongoing monitoring and trial-related check-ins, reducing repeat travel to the CoE

The Catch: It Only Works If the System Holds Together

A hub-and-spoke model isn't a free lunch. It depends entirely on one "operating system" working well. If the hub gets overwhelmed with cases that didn't need to be there, or if the digital infrastructure connecting spokes to the hub breaks down, the whole network suffers. Making this work in India would require real investment in two things: unified digital medical records that let hub specialists see spoke patient data instantly, and reliable transport logistics for the cases that do need to move.

The Bottom Line

Centers of Excellence remain essential for aHUS — they're where research, training, and the deepest expertise live. But for a disease where speed of diagnosis determines outcomes, relying on CoEs alone leaves patients in remote parts of India dangerously exposed to delay. A hub-and-spoke model, built on strong digital connectivity and transport logistics, offers a realistic path to bringing rapid aHUS diagnosis closer to where patients actually are.