At last! Cystic Fibrosis crusade poster girl Harriet gets wonder drug2020-02-01
The five-year-old featured on our front page in 2019 as we campaigned for an NHS deal for Orkambi.
In April, when we secured the 100,000 petition names to trigger a debate in Parliament, she thanked readers with a sign saying “We did it!” And in October, when the UK got a deal with US firm Vertex, she appeared on the front of our “victory” edition.
As we continue to crusade for speedy access to Vertex’s latest and yet-to-be- licensed drug Trikafta, Harriet finally held her own Orkambi – the only CF pills currently approved for under-12s.
Her mother Emma from Jarrow, South Tyneside, said: “It’s the day I never thought we’d see. I held the box in my hand last night and cried as all the emotion came out.
“She is on her third dose, has no side effects, and this has come at just the right time after health-wise she suffered a tough 2019. When I gave her her first pill she said, ‘What’s this for?’ I told her, ‘This will help with your CF and make you feel stronger and better and get less coughs and colds’ – so she happily took it.”
When we first wrote about Harriet last February, English teacher Emma, 39, and husband Chris were considering moving to Scotland so she could access Orkambi.
The mother of two added: “The last 12 months have been a real roller-coaster ride.
“Now when Harriet is older we will be showing her all her Daily Express stories she did as a young child, with real pride at what she helped do.”
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