A Busselton woman with Cystic Fibrosis is desperately hoping a life-changing drug will be approved by the Pharmaceutical Benefits Advisory Committee when they meet in July.
When Jackie Hodson turns 27 in October, she will reach her life expectancy.
In spite of her struggles, Ms Hodson considers herself one of the lucky ones.
She is currently on Orkambi, a drug she received on a compassionate scheme from Vertex Pharmaceuticals as she was a part of its clinical trial.
As the drug isn’t on the Pharmaceutical Benefits Scheme, it costs $250,000 a year for patients.
Ms Hodson said it was frustrating that the drug was unattainable to the people who needed it.
“People don’t have that kind of money, it is not on the PBS because the government doesn’t consider it cost effective,” she said
“The government think the results aren’t good enough for the price, they want results to be better even though we are in hospital 60 per cent less and it increases lung function by 40 per cent. People that aren’t able to take it are dying, I just don't understand how lives can have a price on them.”
People with Cystic Fibrosis develop an abnormal amount of mucus within the lungs, making it difficult to breathe.
Ms Hodson credited the drug with her health remaining stable over the last three years.
“I don’t get as as sick as often and when I do get sick I recover quicker,” she said.
“It’s closest thing we have to a cure, you are not taking an antibiotic treating you for being sick, it’s fixing the problem. It is the first drug to treat the underlying cause and not just the symptoms.”
Although she has access to the drug, Ms Hodson is still in limbo, unsure of how long Orkambi will be provided to her – especially if it is again refused for the PBS.
“If the government denies it again, what’s the point in the company even making it. They may question whether they should bother trying if governments don’t approve it,” she said.
Currently, Ms Hodson’s lung function fluctuates between 30 to 36 per cent.
When it drops under 30 per cent, she will need a lung transplant.
Right now, she has a lot to look forward to, marrying the love of her life, Busselton Magpies captain Aidan Fraser in November.
She said reaching the milestone of 27 would bring up mixed emotions for the pair.
“It will be good to have made it, I’m just hoping to keep going,” she said.
“I think when I turn 30, that will feel really good.
“Ultimately, it is what it is. We don’t get anywhere by dwelling on it. It is hard to see what other couples are going through, we just have to hope that it’s not going to be us.”
Ms Hodson knows how precious time is when living Cystic Fibrosis.
It is why she is an outspoken advocate for the cause and local group Conquer Cystic Fibrosis South West.
She hopes Orkambi will become available to others like Bunbury’s Barrett family.
Taryn and Adrian Barrett’s youngest son, two-year-old Connor, has Cystic Fibrosis.
The couple, along with their sons Oliver, Spencer and Connor, protested for the cause in Sydney on April 30.
The demonstration in Martin Place made national headlines and the family were interviewed on morning program Sunrise.
If Connor was able to access Orkambi, it would add 23 years to his life expectancy.
Ms Barrett described the fight as frustrating, and one that shouldn’t be battled in a first-world country like Australia.
“It’s one we have to win because there are fears that this drug company may leave the country if its fourth submission to the PBAC fails,” she said
“The price negotiations process for Orkambi, lasting two and a half years already, has been deadly. Every day children with Cystic Fibrosis are suffering irreversible damage.
“Our federal government will not pay the price to reduce their suffering and extend their lives and Vertex hasn’t yet shown its ability to negotiate fairly. Hopefully they will both come to their senses soon so our sons can remain blissfully unaware of the the gravity of this situation and our youngest son doesn’t have to endure preventable suffering.”
A spokesperson for the federal Department of Health confirmed Vertex Pharmaceuticals had made its fourth submission to the PBAC to list Orkambi on the PBS for the treatment of certain cystic fibrosis patients aged 12 years and over, plus its first submission for patients aged six to 11.
The outcomes from the July meeting will be made public on August 17.
The Capel Vale Conquer Cystic Fibrosis Grand Ball 2018 will be held on May 12 to raise money for Conquer Cystic Fibrosis.
For more information and tickets, visit the events Facebook page here.
