Costing lives: the price of orphan drugs

SARAH Walker needs her own bedroom. For her sister’s sake, not hers. See, Sarah, aged three, was born with pulmonary interstitial glycogenosis, a rare lung disease, and needs a noisy BiPAP breathing regulator to sleep. 

The only problem is, the huge cost of giving Sarah some chance at a normal life has driven her parents deep into debt. For now the room, and her sister’s sleep, will have to wait.

“The cost of living in hospital while trying to raise the rest of my family at home – petrol, parking, food, specialist appointments – it just all adds up,” Sarah’s mum Susanna tells MO. 

“We’re still in the red now, we still live week-to-week, we haven’t been able to save money.”

It’s not just those calculable hand-in-pocket items. The true cost of raising a child with a rare disease – which means it affects fewer than 2000 Australians – is insidious.