When Regan Sparks was born 23 years ago, she wasn’t expected to live beyond her early 40s.
But when a “life-changing” drug became available in 2020, the future for those like her with cystic fibrosis (CF) was transformed.
For the first time, Regan, of Benfleet, Essex, began to imagine a long life for herself. Her health improved dramatically. She got a job, found a partner, started running, and booked backpacking trips.
She dreamed of working in Australia for a year, but the medication that changed her life proved to be the roadblock in making that dream a reality.
One of Australia’s visa requirements is a limit on how much a potential visitor might cost the community, external should they need medical treatment.
This threshold is currently A$86,000 (£45,700) over the duration of someone’s visa.
However, Regan’s medication, Trikafta, costs A$250,000 (£133,000) a year.
The decision to refuse her a visa was “a kick in the teeth”, she says.
“I’ve never ever let my CF stop me do anything. It’s never ruled a decision or a dream that I’ve got.”