A COMPANY which produces a “miracle” cystic fibrosis drug says it has done everything possible to make the treatment available.
Goornong child Amelia McCrohan has been unable to access Kalydeco due to restrictions on subsidies.
Health Minister Peter Dutton last week called on Vertex Pharmaceuticals, which manufactures the drug, to act in good faith when negotiating with the government.
Mr Dutton told The Bendigo Advertiser Vertex was going through the same process as other companies looking to list drugs on the Pharmaceutical Benefits Scheme and “should now explain why they won’t be fair”.
But Vertex spokeswoman Megan Goulart said the government was imposing strict conditions on access to the drug.
“Unlike any other country in the world, Australia is seeking to impose strict eligibility criteria that exclude the sickest patients from being treated, and discontinuation criteria that would result in patients who are experiencing benefits being taken off treatment,” she said.
“These conditions could disqualify approximately half of current (patients with the gene mutation) in Australia from receiving KALYDECO.
“Vertex is unable to agree to all the conditions proposed by the PBAC, but remains committed to reaching an agreement with the Australian government that is in the best interest of all patients as we have elsewhere in the world.”
The US company has adhered to the government’s demands, Ms Goulart said.
“We have followed the process and timelines laid out by the government, including promptly addressing requests for additional submissions and information,” she said.
“The offer made to the Australian government is in line with what was offered to and accepted by governments throughout the rest of the world.
“Additionally, Vertex’s Senior Vice President and International General Manager made two trips to Australia within a two-week period in December in attempt to negotiate with the Department of Health.”
Amelia’s father Tim recently said he had “basically given up” hope.
“We’ve basically given up now,” he said.
“The government has gotten in the way.”
He said Kalydeco would allow Amelia to avoid any damage caused by the disease, which has already seen her hospitalised on several occasions.
“It’s a tough time,” Mr McCrohan said.
“When you have a look at the effects the drug has on people who have had significant lung disease and how healthy they are, the drug has a really good outcome. But at the moment there’s no real hope of getting it anywhere."
Mr McCrohan said the young family had to get on with their lives.
“There are no words in the vocabulary to describe my anger," he said.
“There’s a human at the end of this and (Health Minister) Peter Dutton and the drug companies are playing politics over her life.
“We can’t keep waiting for this, we’ve just got to get on with our lives.”