Being diagnosed with a rare disease is destabilising. Being told your country cannot fund the treatment that could stabilise it is something else entirely.

When I was diagnosed with Paroxysmal Nocturnal Hemoglobinuria (PNH) and aplastic anaemia in July of 2024, my survival was determined by geography, not only biology. In New Zealand, publicly funded access to complement inhibitor therapy was not available yet. My condition could be managed elsewhere, but not at home. The implications were immediate and deeply personal: pause my studies, leave my support network and relocate across the Tasman in search of care.

Moving to Australia was not a choice made lightly—it was a medical necessity.

Or at least, that’s what we told ourselves during the many family dinners that followed. Between bites of pasta, my future was dissected. My doctors weighed in, my family weighed in and at some point, Australia began to sound less like a country and more like a treatment plan.

Technically, I had options. I could have stayed in Italy with my family and accessed treatment there—a medically sound plan, except for one minor complication. Universities in Italy don't even offer a degree in Biomedicine in English. There was also the possibility of returning to the leading PNH centre in Leeds, England. Scientifically, it made sense. Emotionally, less so. Leeds and I have history—I dropped out of university there in 2021, which didn’t exactly scream “fresh start.” In theory, this was a complex, carefully considered international relocation involving healthcare systems, academic continuity, and long-term prognosis. In reality?

Flights were booked. Bags were packed. Life pivoted. If you ask my mother, it was all done in under 24 hours—a timeline she now recounts with the same drama reserved for breaking news segments.

Since my diagnosis, I entered a healthcare system where treatment for PNH was accessible, Eculizumab and its longer-acting successor Ravulizumab are funded under the Pharmaceutical Benefits Scheme. These therapies target the complement protein C5, preventing the formation of membrane attack complexes responsible for the intravascular haemolysis that defines PNH.

PNH is a chronic bone marrow disorder caused by mutations in stem cells. But the difference between unmanaged haemolysis and controlled complement inhibition is profound. Instead of living in a cycle of haemoglobin drops, fatigue and uncertainty, I entered a structured monitoring and proactive management plan. Being under the supervision of one of the foremost PNH specialists, and his exceptional healthcare team, I feel profoundly grateful. Stability changes the psychological landscape of disease. 

Since arriving here, the first months have been a mix of relief and adjustment. On one hand I had my medical treatment planned but on the other, everything else felt provisional. Finding a place to live, navigating public transport, enrolling into university and rebuilding a social life from scratch. Here, I felt like I could manage all of life’s challenges within a supportive healthcare framework. The University of Melbourne is located right within the city’s medical precinct—indeed, well situated. Switching to an Australian biomedicine program meant catching up on prerequisites, navigating a new academic culture and coping with the lingering anxiety that comes with chronic illness. Yet being in a system that accommodated my health needs with flexible deadlines and examination support gave me confidence. I could imagine finishing a degree.

And this is where rare diseases expose something larger than biology. The science behind complement inhibition has existed for years. The therapies are licensed, studied and transformative, yet access remains dependent on national funding frameworks, population size and cost effectiveness. In small healthcare systems rare diseases often fall victim to economic modelling. How many years of life does the treatment add? How many hospital admissions does it prevent? These are the questions that swarm policymakers' heads and often expressed in Quality-Adjusted Life Year (QALY)—a metric that determines whether the treatment is both efficient and affordable to fund.

The result is a quiet, but consequential reality: where you live can determine how safely you live. Rare disease patients do not move countries lightly. We move because policy leaves us no alternative. I am acutely aware of the privilege embedded in mobility—not every patient has the luxury to relocate in response to funding gaps. 

Australia did not cure my PNH, but it gave me access to treatment—and with that, the ability to plan, to study, to build and to continue. Disease may be rare, but access to care should not be.