Outrage as ‘life-changing’ eczema drug fails to make PBS
Australians suffering from severe eczema have been left devastated after plans to put a "life-changing" drug on the government's subsidy scheme were halted for a fourth time.
The drug, called Dupixent, delivered by injection, has been hailed for its miraculous ability to repair the raw, cracked and itchy skin of eczema sufferers.
It was set to be approved for the Pharmaceutical Benefits Scheme in April, but seven months later, sufferers are still being forced to fork out $1600 a month to buy the medication.
Eczema Support Australia has written an open letter to the Pharmaceutical Benefits Advisory Committee, which will meet on Wednesday to reconsider if the drug should be made available on the scheme.
The group is pleading with the committee to remember "what this medicine means for those tortured by itch".
"You have never met us, but you hold great power over our lives," the letter said.
"As you meet to decide on the future of this medicine … we appeal to you to do everything possible to end the wait and stop the suffering."
Managing director Melanie Funk said the delay had been "agony" for patients and their families.
"It is a heavy blow to our members that this medicine is being reconsidered eight months after it received a positive recommendation from the committee. It's just not right," she said.
Year 12 student Ella Hodges, 18, has been plagued by eczema since she was a toddler.
This year - in anticipation the medication would soon be available via the PBS - the Blackburn South teen's family began paying for the drug themselves so they could "just get through".
They say they've been "gutted" by the ongoing delays.
"My whole life revolves around my skin and it's just so hard to focus at school," Ella said.
"I've managed to deal with it for a long time, but it's got to a point where I shouldn't have to deal with this."
An enthusiastic Irish dancer, the teenager said being put on the drug had "changed my life".
"I've been able to go on walks and exercise more, I'm not so uncomfortable," she said.
"I've worn jeans a couple of times, which I haven't been able to do in a long time … and I want that for other people who can't afford it."
Gayle Ross, head of the atopic dermatology clinic at the Royal Melbourne Hospital, said the treatment would allow patients like Ella to "lead a normal existence".
"We've had a number of treatments available for some decades but this is the first time we're experiencing something more targeted," Dr Ross said.
Originally published as Outrage as 'life-changing' eczema drug fails to make PBS