Published: 13:46, 17 May 2019
| Updated: 13:46, 17 May 2019
A Kent mum who was diagnosed with cystic fibrosis when she was a young girl is due to meet the health secretary as she campaigns for what could be a live-changing drug.
CF is where a sticky mucus clogs the lungs and can also affect the digestive system and other organs.
Orkambi is widely available across the US and Europe but not in the UK.
It costs around £105,000 per person per year.
Carlie Pleasant from Sittingbourne says having it on the NHS would make a massive difference - she's been telling us her story.
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More by this authorNicola Everett