The Brabulla family’s fight for the mysterious medicine, Trikafta included in the benefit scheme was successful | Blue Mountains Gazette

The Brabulla Noble family has been campaigning for more than a year to get a drug called Tricafta on PBS. The Gazette First Reported their plight a year ago. The drug greatly increases the chances of survival for her daughter Lucy and another 1800 CF patients.

Cystic fibrosis is a progressive hereditary disorder that causes persistent lung infections. Lucy Noble, 25, a former Springwood High School student with a degree in animal and veterinary biological sciences from the University of Sydney, was diagnosed with CF at the age of eight weeks. Since then, her family has been hoping for a breakthrough.

Recently, the family celebrated the “great and long postponed news” that the Drug Benefits Advisory Board recommended making Trikafta available. Over the weekend, it was announced that game-changing medicines will be posted on PBS from April 1st.

“It goes without saying that I was very happy to get the news yesterday,” said Kay Phillips, Lucy’s mom.

I am very pleased with Lucy, the CF victims, their families, and the broad community that will greatly benefit from this decision. Trikafta is not a cure for CF, but it is the greatest breakthrough treatment to date and will improve the lives of people with CF immeasurably. Thanks again to everyone who supported the campaign to put Trikafta on PBS.

Trikafta has been available internationally for two years and is available in 25 countries around the world.

The disease affects all cells in Lucy’s lungs and gastrointestinal tract, but she hopes the new drug will improve lung and stomach function, as early scientific results show. Some say it’s like getting a new lung.

“On a normal day, I take 5 nebulizers and 30-40 tablets to keep the airway open for 90 minutes,” Lucy said. Based on her early scientific results, she believes that “you can take many of the medicines I take and you won’t have to go to the hospital that much.” Lucy is in one early iteration of the modulator.

Lucy said she was grateful for “the efforts of many.”

“This decision is a huge win for the entire cystic fibrosis community and I still honestly agree. I can’t thank the other community, the Blue Mountain community. For the last few years.

“Cystic fibrosis has many silvery linings, one of which is arguably a lesson of gratitude. Ultimately, the decision to fund this drug is for so many people. It was the result of an effort. But there are three people. Dad and Patrick who have fought with me for this decision, and I am most grateful to them. “

“The communities that provided support during this campaign … moral support, signing petitions, contacting parliamentarians, and Gazette For their articles that helped a lot in raising awareness. “

Last year, Nettie Burke, then CEO of Cystic Fibrosis Australia, said, “50% of CF patients have died by their mid-20s.” Mrs. Burke said the results from the “mysterious medicine” were impressive. She said, “Eight people have been removed from the New South Wales transplant list. People will live longer. That’s definitely a fact.”

In Australia, 1 in 2,500 babies are born with cystic fibrosis. Currently, there is no cure and life expectancy is 47 years.

In Australia, tricafta costs more than $ 250,000 a year, and Hunt said treatment is “out of reach for most Australians.”

“Patients can only pay up to $ 42.50 per script, or just $ 6.80 with a concession card, now available on PBS,” he said.

“I am very proud that Trikafta is one of the last treatments listed on the PBS under my supervision as Minister of Health.”

The move is outlined in a federal budget preview over the weekend and is estimated to cost approximately $ 475 million annually.