The Cystic fibrosis (CF) community is fighting to gain access to Trikafta. This drug has the ability to transform the lives of those suffering.
Nettie Burke CEO of Cystic Fibrosis Australia, is one of the main advocates leading this campaign.
“For the first time ever, a drug is treating the disease and not the symptoms.
“This drug can help make some of their dreams come true.” Ms Burke said.
What is Cystic Fibrosis?
This causes blockage of the pancreatic ducts, intestines, and bronchi; often resulting in recurring infection.
These infections lead to irreversible damage and failure to the lungs which can often cause death.
Keely Oldakers medication (Photo:Supplied)
“Rose filled lungs.”
“I put it this way because it sounds like a lovely disease, not a build-up caused by thickened mucus that clogs certain parts of the body.” – Keely Oldaker
While there is currently no cure for this condition. Trikafta has proven to exponentially improve the lung function and quality of life.
Trikafta has been described as “game changer” said Nettie Burke.
It has been forecast to add three to four decades of extra life.
“People I knew did not have the energy to get out of bed and were having sex on this drug.
“They will be well enough to have babies, a career, and improve their mental health.” Ms Burke said.
Keely Oldaker (Video:Supplied)
The problem is the drug costs more than $300,000 for a year supply.
The CF community are vigorously campaigning not only to gain access to Trikafta but additionally for the Pharmaceutical Benefits Scheme (PBS) to list the drug. This allows the government to partially subsidise the costs, making Trikafta more affordable and accessible.
Keely Oldaker has suffered from Cystic Fibrosis her entire life.
“As there is so much medication required to maintain a CF sufferers health, I thought I’d just provide you with one example. My enzymes cost $6 for one bottle on the PBS but is roughly $40 without health care support. These are usually monthly drug costs.” Ms Oldaker said.
The negotiated price submitted by vertex (the manufactures of Trikafta) has not yet been publicly released.
However, the CF community are hoping that a portion of the $2.8 billion announced in this year’s budget for the PBS ‘New Medicines Funding Guarantee’ will go towards Trikafta.
The PBS was unable to comment on the succession of Trikafta, due to the high volume of enquiries for COVID.
Keely Oldaker’s tattoo (Photo: Supplied)
“CF has taken so much from all of us, that we suffer at the hands of this disease. Having access to Trikafta within our community would mean a second chance at life” Ms Oldaker said.
Hospital admissions, medication costs, flu seasons – lots of things to consider that many others would just go about their day to day.
COVID & CF
We all fear the effects of COVID-19, however, suffers from CF are at high risk as their lungs operate at a much lower capacity than others.
The accumulation of mucus will cause their lungs to deteriorate resulting in damage that could be fatal.
In Australia, there are currently no confirmed COVID patients that suffer from Cystic Fibrosis. There are a handful in the UK and USA, who are currently being treated.
A lot of people are saying they want the pandemic to end so they can go about their day to day, for us precautions will continue.
We don’t get to go back to living ‘normal’. – Keely Oldaker
Public Awareness Campaign
Sonya Driver, CEO of Eco Tan and Keely Oldaker’s boss, is a leading advocate in support of Trikafta.
With 191k followers on Instagram and a $2 Million business, she hopes to gain momentum in requesting the Health Minister and Prime Minister to put Trikafta on the Pharmaceutical Benefits Advisory Committee (PBAC) agenda for 2020.
“When we work together to make noise, change will follow.” Ms Driver said.
The PBAC’s main role is to recommend new medicines for the PBS. No new medication can be listed unless the Committee makes a positive recommendation.
The PBAC meets three times a year. The goal is that Trikafta is approved at the March 2021 PBAC meeting and a commercial deal can be struck within six months.