‘Hopefully I can now live like any other normal 24-year-old’

REWARDED for campaigning for more than three years for life-changing drugs to be made available to both herself and others like her, one Guernsey woman will now be able to experience life ‘like every other 24-year-old should’.

Courtney Read lives with cystic fibrosis, a painful and life-limiting condition which requires a range of treatments to help control the symptoms, prevent or reduce complications, and make the condition easier to live with.

Miss Read, along with her father, Mike, chairman of campaign group Health Equality for All, have been calling for these drugs to made available for years.

The drugs were not available to patients in Guernsey, but after an agreement was struck between the States and the National Institute of Clinical Excellence, the first of those drugs have now been prescribed.

Miss Read said although she had been taking the new drug, Kaftrio, for only a few days she had already seen a big difference.

‘It’s surprising how much of a difference it has made,’ she said.

‘I had been on another of the approved NICE TA [technology appraisal] drugs, Symkevi, but unfortunately it hadn’t worked as they can affect people differently.

‘It’s been a vicious cycle of me continually being unwell and getting infections and getting worse, and though I won’t get my hopes up, taking this is promising – I’m hopeful that I’ll be able to live like any other normal 24-year-old.’

Cystic fibrosis is caused by a faulty gene that causes sticky mucus to build up in the lungs and digestive system, causing lung infections, breathing difficulties and problems with digesting food.

Until recently, the average life expectancy for people living with the condition has been no older than 40.

The condition means Miss Read spends hours each day mixing up and self-administering her medicines in order to just fight the symptoms.

She often has to spend weeks in hospital receiving treatment.

‘I don’t get to experience much,’ she added.

‘Usually I’m tied to the hospital or the house and I don’t know how I’ll feel each day. This drug will give me a more stable life and a better routine and I hope eventually my anxiety levels will reduce and I’ll be able to make more plans.’

Mr Read founded Guernsey’s cystic fibrosis charity.

He said achieving this had been part of the bigger picture of NICE TAs being available to all islanders.

‘This has been a huge battle for all who needed these drugs,’ he said.

‘Time for all is limited and is why it’s been so important. Personally as a family it means a lot. Courtney didn’t think it would come in time for her, it’s a huge relief.

‘It’s fantastic for Guernsey and incredible for us as a family.’

The States’ decision in January to increase the range of NICE TA drugs and treatments to Bailiwick residents is seeing medicines being introduced incrementally, beginning with 16 drugs.

Thousands of islanders have already seen the benefits.

HSC hopes to make available more life-changing drugs during the first half of 2021.

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