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A mum who campaigned for a life-changing drug to be made available on the NHS is now concerned about its supply during the coronavirus lockdown.
Carlie Pleasant from Sittingbourne was diagnosed with cystic fibrosis as a young child and fought a long battle to get access to Orkambi.
She revealed last October how she was contacted personally by Health Secretary Matt Hancock after an agreement was reached between the health service and drug company.
The 30-year-old, who is mum to son Jude, started isolating before the government announced tougher restrictions on our movement during the pandemic, but can not stockpile the drug she needs.
Specialist rooms at Kings College hospital in London where she would usually be treated if she became unwell are also unavailable as they are being used for people with Covid-19.
She said: “Luckily, I’ve managed to get quite a good lung function behind me since starting the Orkambi treatment last year so thankfully that all came through just in time otherwise I would have had quite a low lung function to start myself off on this isolation.
"No extra help with intravenous antibiotics could have been quite a bad situation but I managed to get a little bit of strength behind be over Christmas thank goodness."
People with cystic fibrosis have been told they are one of the high risk groups.
Mrs Pleasant is planning to spend the next three months in isolation to keep herself safe - even though that means being away from her husband who is a teacher.
She is in contact with her medical team regularly but says there isn’t any information about when and where she will be able to get her medication which comes from America.
She added: “I only ever get a months supply of Orkambi at any one time so I’m down to my last three weeks now.
“It’s a big worry because before I started to take Orkambi my health was deteriorating and my lung function was dropping and I was unable to get it back up. But since starting this tablet on Christmas Eve I’ve been able to maintain quite a good lung function for me so it’s clear that it’s definitely having an impact.
“If I was to stop that because of supply needs, it would be even tougher for me to keep on top of things.”
Mrs Pleasant also needs to exercise to try and clear her lungs of the sticky mucus that clogs them and regularly visits a gym.
She is now attempting to keep up a routine at home while they are closed.
