There are calls for a life changing medication to be given the green light for younger kids.
The drug, Trikafta, is used as a treatment for Cystic Fibrosis and has been added to the Pharmaceutical Benefits Scheme for children over the age of 12.
However, Cystic Fibrosis Queensland CEO Petrina Fraccaro says that our youngest children don’t have time on their side to wait until they’re 12 to start the treatment.
“Trikafta was approved for listing by the PBAC just before Christmas last year, but this has turned out to be not quite the Christmas present our community needed,” she says.
“Here we are, a month later, still with no certainty nor commitment from the Government that they will fund Trikafta for our littlest members.
“Children aged 6 – 11 years need access to this life-changing drug today.
“The sooner we can do this, the sooner we can halt the life-threatening lung exacerbations associated with cystic fibrosis.”
While there is no cure for Cystic Fibrosis, Trikafta has been found to improve the individuals’ health and also extend their life expectancy.
Recently, Member for Capricornia Michelle Landry met with local parents Jaimee and Mitchell, whose daughter, Mila, lives with Cystic Fibrosis.
The cost to access Trikafta is over $250,000, leaving this treatment out of reach for many families.
Ms Landry has called on the Federal Labor Government to green light funding for the medication.
“It was heartbreaking to hear of what Mila has to do on a daily basis just so she can breathe,” she says.
“The many medications, nebuliser treatments and physiotherapy that Mila endures is more than any young child should bear.
“It is incredible to see her so vibrant and energetic.
“I know many of us wouldn’t have the strength to tolerate what Mila does.
“The sooner a child can gain access to this wonder drug, the less damage their lungs will be left with.
“Trikafta was approved by the PBAC in December and yet, we are still waiting on the Federal Government to commit the funding needed for these children to improve their quality of life.”