A REDLANDS mum is hoping a drug listed on the PBS could help her son breathe better and live longer.
Little Nixon Hoyle Slater, 10 months, has a chronic disease called cystic fibrosis.
The genetic condition causes the respiratory, digestive and reproductive systems to become clogged with mucus, with the damage so severe lung transplants are usually required.
Patients live to about 38 years on average because of worsening health.
But the drug Orkambi, developed by US-based company Vertex Pharmaceuticals could help young Nixon and others like him.
The medicine was approved this month to be listed on the Pharmaceutical Benefits Scheme after years of campaigning by cystic fibrosis sufferers across Australia.
Nixon’s mum Ashleigh Slater said at $250,000 per year per patient, the drug had been out of reach for people with the disease, including Nixon.
This month, the price was dropped to fewer than $100 per year for Australian patients aged six and over, an extraordinary saving supported by tax payers through the PBS.
“I go to sleep at night now with the relief that although Orkambi is not a cure, I have exhausted every treatment available to ensure that Nixon has a chance at the healthiest possible future,” Ms Slater said.
Ms Slater said patients and their families marched to Vertex’s Australian headquarters in Sydney earlier this year to ask the company do more to help.
Requests for Orkambi to be subsidised were rejected three times by the PBS committee on cost-benefit grounds before its approval on August 17.
“Orkambi has the ability to add an extra 23 years to a cystic fibrosis patient’s life,” Ms Slater said.
“There is also less likelihood of organ failure and the need for a transplant, increased possibility that (patients) will be able to go on to have their own children, less frequent hospital admissions, increased lung function and overall a better quality of life.”
Vertex claims Orkambi helps stop excess mucus production in people with a certain type of the disease but its effectiveness will continued to be monitored by researchers.
Nixon’s grandmother Kathryn Slater said advances in treatments for cystic fibrosis continued to give her hope.
She said her husband had a cousin who died when he was a boy, four, about 45 years ago.
Other family members were also affected by the disease.
Data from Cystic Fibrosis Australia reveals one baby is born every four days in Australia with cystic fibrosis.
The condition can be passed to children if both parents are carriers. More than one million Australians are believed to carry the genes.
