Evie changes lives of kids with cystic fibrosis

Evie outside Parliament House.

By Abbey Cannan

With a motto of ‘no one gets left behind’, Sunshine Coast teenager Evie Marshall changed the lives of thousands like herself with cystic fibrosis after successfully campaigning to make a $250,000 life extending medication more accessible.

Evie has now been recognised for her amazing efforts with a state leadership award.

Beside her all the way was Evie’s mum, Sonia Marshall, who is incredibly proud of her daughter.

“I was so proud that my daughter could make a difference to people’s lives in that way and that she was being recognised for the work that she had done,” Sonia said.

“It’s been an incredible journey. Evie winning the state leadership award was really a team effort, which she said in her speech, and it’s all thanks to the support that she receives from the cystic fibrosis community and the greater community that has contributed to the outcomes she has been able to achieve.

“Evie was really surprised. She is a very humble kind of kid so she didn’t have any expectations and was blown away to be a finalist. She was very nervous on the night because she had to make a speech after winning.”

Division 5 Councillor Jenny McKay attended the awards ceremony and cheered on Evie with all her might.

“I’m incredibly proud of the young Evie and all she’s done to achieve this leadership award,” Cr McKay said.

“To not only battle with her own challenging condition, but then to gather national support and successfully campaign to have this expensive medication made more affordable for everyone is such a remarkable feat for anyone, let alone a 13-year-old.

“I was blown away by Evie’s story, accomplishments and her glowing and humble personality.

“She’s one of the best representatives for the Sunshine Coast that I’ve ever met.”

Sonia said the first time she heard about this life-extending cystic fibrosis medication called Orkambi was back in 2010 when Evie was just five years old.

“At that point I was watching other people go through the clinical trials and hearing about the benefits and I felt that if that medication existed and it could help my daughter and thousands like her, that I would fight for that medication to be accessible and affordable in Australia,” she said.

When Evie turned 10, Sonia spoke to her about the medication and they both decided they wanted to campaign to make it more accessible.

“We spoke to her doctors and they said that the medication might not help Evie but we made up our minds that we needed to try,” Sonia said.

Evie then started campaigning for the medication to become more accessible to Australians, with the Pharmaceutical Benefits Advisory Committee first rejecting the medication. After three years of campaigning, the medication was finally recommended on 17 August 2018.

“We were then able to convince Minister for Health Greg Hunt last year that Evie needed fast-paced access and the minister then fast tracked the process and we received the medication in one month,” Sonia said.

“Evie is now on the medication, along with 1300 young children and young adults in Australia. Patients from the age of six can now access the medication at just $39 per month. It was a huge win and victory for the cystic fibrosis community. This medication is now totally changing their life expectancy and these kids are pretty much going to have a normal life. These kids won’t have to grow up in and out of hospital like Evie did. It is very heart warming.”

Since being on the medication, Sonia said Evie’s life has changed dramatically as her health has improved in a huge way.

“Evie has been spending the last eight months catching up on school and she plans on continuing to campaign for the cystic fibrosis community.”

There is now a new generation drug available which was recently put to the Pharmaceutical Benefits Advisory Committee and Evie was once again right there writing to recommend the new medication for cystic fibrosis, which in turn has been approved.

“Evie has successfully created a relationship with the Minister of Health and her aim is to continue to campaign for the community. She is also continuing to support and mentor other teenagers with the disease as it can be very isolating for them.”