Carrie Leppard cried tears of joy this morning when she got the news that she will be able to afford medication that will change her 12-year-old daughter’s life.
The average life expectancy for people living with Cystic Fibrosis is 37 years old.
“It gives us genuine hope that she’ll be around and healthy enough for when a cure is available,” Ms Leppard said.
“She knows about the expectancy but it will get more intimidating as she gets older”
“It restricts your thoughts of having a family or what you want to do with your career or travelling”.
The Federal Government announced on Saturday that they will add the “life-changing” drug, Trikafta to the Pharmaceutical Benefits Scheme (CBS).
It will save 1900 Australians living with the disease up to $250,000 a year – shrinking the cost to just $6.80 a month.
Charlotte Leppard takes medication every day to treat the various symptoms of her condition but before Trikafta, there was nothing that could treat the underlying cause of her particular genetic strain of CF.
“We’ve been waiting for one that would fit her,” Ms Leppard said. The newly-subsidised medication can increase energy, improve lung function and in some instances has been able to reduce daily medication intake.
For Charlotte, this could mean fewer lengthy and costly hospital visits and less time away from school.
A recent two week stay in hospital meant that Carrie had to take time off work to care for Charlotte while her father also took leave to look after her other children at home.
“The earlier you start, the less irreversible damage she will do to her lungs,” Ms Leppard said.
Cystic Fibrosis Community Care chief executive Karin Knoester said that the decision is “about as significant as it gets”.
The drug will become available at subsidised cost on April 1 meaning Charlotte will be available to speak with her doctor this week about getting started on the new medication.
Health Minister Greg Hunt said he was proud to add “one of the final treatments listed on the PBS under his watch” in his final budget as Minister.
