Mum's push for cystic fibrosis treatment to be subsidised for children under 12
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Loading... - Camilla Thomsen
- 25 Jan 2023
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Jumping on the trampoline and laughing with her older sister, it's hard to believe Mila, a lively four-year-old, is living with a life-threatening genetic disease.
Key points:
- 1. Trikafta, used to treat cystic fibrosis, was added to the PBS last year for ages 12 and up
- 2. Rockhampton mum Jaimee Sewell and advocates are pushing to extend the PBS listing to younger children
- 3.The federal government says it's working with the company behind the drug to make the addition, but has given no clear time frame
"We try and make it work and make it normal and fun, but it's hours of treatments, physiotherapy, nebulisers and inhalant drugs," her mum Jaimee Sewell said.
"She needs medication every time she just eats a snack … that's normal for Mila."
Mila was diagnosed with cystic fibrosis aged just one, after experiencing lung failure in hospital, and is now reliant on intense doses of medication to manage the condition.
Ms Sewell, from Rockhampton in central Queensland, said realising she may outlive her daughter was tough.
"Like any parent with a child who's given a chronic illness, you grieve the life they were supposed to live, so you've got to come to terms with that," she said.
A relatively new treatment could offer Mila a better quality of life in the near future, but the drug is financially out of reach for her family. Read More…
