When I was born in 1990, the life expectancy of people with cystic fibrosis was about 40. I was diagnosed when I was just six months old, and my parents were told then their daughter would have a very different kind of life.

Cystic fibrosis (CF) is a genetic disease that causes the body to produce thick mucus, affecting mainly the lungs and digestive system. Growing up, my condition had been well managed, but in my 20s that changed and I began to deteriorate. I remember not knowing what my laugh sounded like, because whenever I found something funny I would descend into a painful coughing fit, rather than a fit of giggles. I remember the hours of physiotherapy, my daily medications – each with their own side-effects – and the trips in and out of hospital. But mostly I remember the fear. Fear of the future, fear of leaving loved ones behind, fear of becoming a burden as I continued to deteriorate.

But one night in late 2019, my CF nurse gave me a call. He told me that the National Institute for Health and Care Excellence (Nice) had approved the use of Orkambi – a new gene-therapy drug that had the potential to drastically improve my prognosis. He asked me when I would like to start and told me another drug, Kaftrio, would follow not long after. Although I knew about these drugs (and longed for them) , as they had been available in other countries around the world for several years, I didn’t know then just how much they would change my life.

It was the little things that changed at first. I went from sleeping with six pillows to keep me upright at night and stop me coughing to using just two. One day I was in a car with friends, and someone said something that made everyone laugh. I laughed until tears ran out of my eyes. Then I realised – I was laughing rather than coughing.

Then it was the big things that changed. Doctors had told me that Kaftrio would most likely preserve – rather than improve – my lung capacity. But my lung function, which had hovered at 50% to 60% of the normal capacity, kept on rising. Today it doesn’t fall below 80%. Before Kaftrio, I was an inpatient in hospital multiple times a year and for weeks at a time. But since 2019, I haven’t had a single stay as an inpatient. In fact, I’ve barely needed oral antibiotics.

These drugs have given people with CF their future back. For me, I’ve been able to progress my career, get married, and I’m now pregnant with my first child. Thanks to this miracle drug, CF has become a footnote in my life, rather than the leading character.

These drugs come closer to a cure than anyone with cystic fibrosis could dare to dream of. And yet just four years on from their first approval, Nice has published draft guidance saying the drugs are too expensive, and that it is no longer recommending them for use on the NHS. Nice will make the final decision on 14 December.

For people with CF, our lives apparently come at a price. In my case, it’s £8,346.30 a month before VAT, to be precise. That’s how much a month’s supply of Kaftrio costs the NHS. While people already on this and similar medications, like me, will still get their prescription, if Nice upholds its recommendation then, from January, children with CF who are under six years old – and those born after them – will not be able to access the drugs.

If no alternative solution is found, the future of those children will become dark and uncertain. I don’t know if my husband has the faulty CF gene, so I don’t know whether my child, due in May, could have CF.

Of course, the cost is relatively high, but the benefit to those taking it is priceless. It’s a price set by the drug manufacturer Vertex Pharmaceuticals, which expects almost £10bn in total revenue this year. But there is an alternative solution. In 2019, the then government debated issuing a compulsory Crown use licence, which would secure an affordable, generic version of the drugs for NHS patients.

I can’t imagine how my parents felt when they were told the news of my diagnosis 33 years ago, and it’s heartbreaking that parents around the country might soon be facing the same kind of conversation. If Nice does uphold its recommendation, we must return to the question of Crown use. The future of my community depends on it.