Toddler caught in the middle of pharmaceutical standoff

EXCLUSIVE Cathy O'Leary Medical EditorThe West Australian
Connor and Taryn Barrett.
Camera IconConnor and Taryn Barrett. Credit: Jon Gellweiler/ South Western Times

Bunbury toddler Connor Barrett is too young to know that he is caught up in a stand-off between government bean counters and a pharmaceutical giant.

But his mother Taryn Barrett is waging a war on his behalf, fighting for access to a $250,000-a-year drug that could stop him getting irreversible lung damage from cystic fibrosis.

She was dealt a blow last week when the Federal Government’s pharmaceutical benefits advisory committee rejected for the second time an application to fund the new-generation drug Orkambi.

Mrs Barrett said the sticking point with the PBAC was the cost, and the pharmaceutical company Vertex appeared unwilling to lower its price.

Federal Health Minister Sussan Ley labelled the price “unsustainable and unaffordable” and Vertex said it was disappointed but would work with the PBAC to reach an agreement.

Mrs Barrett, who has older sons Oliver, seven, and Spencer, five, said she and her husband Adrian did not want excuses or compassion — only the reassurance that Orkambi would be available to Connor when he needed it.

In the meantime, about 1000 Australians who have the most common mutation of cystic fibrosis — two copies of the gene known as F508del — were missing out on the first drug to treat the underlying cause.

“When Connor was diagnosed at three weeks old, our Princess Margaret Hospital doctor told us about it and it’s our greatest hope,” Mrs Barrett said.

Connor Barrett and mum Taryn.
Camera IconConnor Barrett and mum Taryn.

“Connor is too young to have it at the moment, so we have a bit of time on our side.

“But many older children and adults need it now and it’s highly likely some will die waiting because they are caught up in these negotiations.

“We need protection from the greed of pharmaceutical companies but we also need Federal Government processes that stop this loss of innocent lives.”

Mrs Barrett said the drug had been showed to reduce hospitalisations by 61 per cent and lung damage by 40 per cent.

It is funded in the US for patients from the age of six and there are moves to make it available from the age of two.

Cystic Fibrosis Victoria, which is lobbying for patients, said families should protest to the Federal Government.

Chief executive Karin Knoester said it was unfair that people with cystic fibrosis had found themselves caught in the middle of a battle between the Government and Vertex over the price.

Get the latest news from thewest.com.au in your inbox.

Sign up for our emails