Pride of Australia: Family wins fight to get life-saving drug Eculizumab on Pharmaceutical Benefits Scheme

AT just seven years old, a sick little boy with a gap-toothed grin has saved the lives of complete strangers.

Ashley Grey (right) his parents, Jason and Kerri Grey and siblings Oliver (3yrs), Mikayla (13), Lachlan (9) and Taliah (8) are nominated for a Pride of Australia award for their campaign to get Soliris on the PBS. Their alturistic act means others will have access to the drug, but Ashley may be forced to go for a month without it to convince the scheme he does need it. Nominated for the Care and Compassion medal. Picture: Tony Gough

AT just seven years old, a sick little boy with a gap-toothed grin has saved the lives of complete strangers.

Ashley Grey’s rare illness is treated by a drug with a complicated name and a $240,000-a-year price tag.

“Mum, how do you say it?” he asks of the medication that keeps him alive. “Ecal-ubul-oozibab?”

He rolls back in fits of laughter.

Eculizumab, marketed as Soliris, is now free thanks to the Grey family’s campaign to have it listed on the Pharmaceutical Benefits Scheme.

Desperately ill people suffering atypical haemolytic uraemic syndrome can now get access to the lifesaving medication.

Despite the Grey family’s campaign, the PBS listing is actually bad news for Ashley.

He was getting the medication compassionately from the drug company.

As soon as it was listed on the PBS, the freebie doses stopped.

And in a sad twist, a condition of the PBS means every 12 months those taking the drugs have to go off them to see if they go downhill, at which point they can then reapply for access.

In just over four months, Ashley will have to go off the drug he can’t pronounce to prove how much he needs it.

That means getting sick — more kidney damage, more organ damage and more time in hospital.

“He needs blood transfusions, he needs dialysis if his kidneys get affected too badly — effectively he could die if it gets bad enough,” mum Kerri said, as daughter Mikayla walked to the kitchen to get a box of tissues for her weeping mother.

“But the bottom line is, people were dying because they didn’t have access to this drug.

“And now they do, it’s saving lives. It was the right thing to do.”

The Grey family have been nominated for the Community Spirit medal in the Pride of Australia awards for their altruistic campaign to save the lives of others.

Do you know a local legend? Then nominate them for a Pride of Australia award.

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