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A mother who headed up a campaign for key cystic fibrosis (CF) medicine to be available on the NHS has had her own treatment delayed.
Carlie Pleasant, who lives in Sittingbourne, was due to join other patients in taking Kaftrio this week but has been held back after contracting a lung infection.
It means medicine she is taking to treat the infection could interfere with the drug - which corrects the gene charged with causing CF.
Carlie has also stopped taking Symkevi - which stops her CF from getting worse - as a precaution.
She said: "In June, I fell ill with a lung infection which I've been suffering with for years.
"The treatment for that is harsh with steroids and anti-fungal medication which interacts with Kaftrio and could cause some side-effects.
"I've definitely spent time weighing up my options. It's a case of whether I preserve my lung function as it is or take a chance and see if Kaftrio will make things better but there's not enough research around it yet."
Carlie spent two weeks in June at King's College Hospital, London, with breathing difficulties, thought to be caused by the infection.
Despite the setback, she remains optimistic she will start taking the medicine before Christmas.
"Stopping taking the medication and delaying the start of Kaftrio was playing on my mind at first," she said.
"I've accepted it now. In the first few weeks I found it hard because people were messaging me saying thank you for campaigning so they could get this drug.
"I'm really happy for everyone else but I feel like I'm watching from the sidelines.
"I've lived with CF my whole life so it's difficult and scary to think of living a life without it.
"There have been points where I've wanted to give up and get angry with CF and think why me.
"To be honest, if I had those thoughts too much it would swallow anything else positive in my life."
Carlie has in the past been hailed for her work in helping to get the drug Orkambi on the NHS for 5,000 patients .
At the moment Carlie takes between about 60 and 70 tablets a day, depending on how her condition is.
She has to take enzymes before she eats every meal to help her absorb as much fat as possible.
Carlie also has to have double the calories a man has to eat every day to ensure she is getting the right nutrients.
"I'm in a better position now than I've ever been," she added.
"With those drugs on the horizon we're in a position now where I can move forward whenever I'm well enough to."
NHS England's chief executive, Simon Stevens announce Kaftrio would be made available in the country at a Health Select Committee on the 30 June.
It will be available to more than 7,000 people in England and can benefit from a therapy which tackles the underlying causes of the condition.
Chief executive of the Cystic Fibrosis Trust, David Ramsden, said: “The licensing of Kaftrio today marks a step change in the treatment of cystic fibrosis.
"With agreements between Vertex and governments across the UK already in place, thousands of eligible people across the UK can now discuss with their clinical team how they can start this treatment as soon as possible.
“It’s also great news that more mutations have been added to those eligible for Kalydeco and Symkevi, giving more children and adults with CF a disease modifying treatment option.
“The UK CF Registry will continue to support access to and monitoring of these new therapies for people with cystic fibrosis. It’s thanks to a huge community effort that these medicines are now available for so many people with cystic fibrosis in the UK, and as quickly as possible.
“At such a positive moment, we are also mindful that much work still remains to find drugs appropriate for all people with cystic fibrosis and further breakthroughs that will support everyone to truly live a life unlimited.”
