Mum fights to get drug on PBS

A Bunbury mother of three has been recognised for her work in raising awareness of cystic fibrosis in the South West.

However, Taryn Barrett wants to take the opportunity to appeal for revolutionary cystic fibrosis drug Orkambi to be put on the Pharmaceutical Benefit Scheme.

Yesterday, Mrs Barrett received the Cystic Fibrosis Consumer Advocacy Network award in Sydney from Cystic Fibrosis Australia patron and Governor General Sir Peter Cosgrove.

Her two-year-old son Connor was diagnosed with cystic fibrosis and in 2016 she started a South West chapter of Conquer Cystic Fibrosis — a volunteer-run charity which funds research.

Mrs Barrett said Orkambi had the potential to significantly lengthen her son’s life.

“People with cystic fibrosis already face a daily battle and they shouldn’t have to fight the Federal Government for the basic right to access this medicine,” she said.

“The most recent data from America indicates that, if taken by age six, a child with cystic fibrosis could expect to live an extra 23 years.

“How could anyone deny any child an extra 23 precious years of life because they can’t agree on a price?”

Mrs Barrett said she was proud of her work in raising awareness of the disease.

“It is a horrible disease but most days we just feel so lucky, we have three beautiful boys and we’re very hopeful for the future,” she said.

“This award is an honour, but the timing makes it bittersweet because the negotiations on funding Orkambi are going backwards.

“Rather than celebrate this award, I take it as an opportunity to remind the Federal Minister for Health Greg Hunt that our community won’t give up in the fight for our children’s lives.”

In 2016, Mrs Barrett raised more than $500,000 to assist research for cystic fibrosis and said she was keen to continue that work.

“If I can help the community by speaking out I will continue to do so and I am also very passionate about supporting medical research through Conquer Cystic Fibrosis,” she said.

“I have only been supporting Conquer Cystic Fibrosis for two years but there have been others working tirelessly and quietly over the 15 years who deserve the praise.

“We are so grateful to them and the medical profession because Connor is benefiting from the advances they have allowed and we have hope for the future.”