Reading the news at the end of last week, I felt like I’d been yanked back in time to one of the hardest days of my life.
The anguish, fear, devastation – all the crushing emotions I’d felt on the day my three-week-old son Ollie was diagnosed with Cystic Fibrosis – came flooding back.
Cystic Fibrosis is an incurable genetic disorder that causes sticky mucus to build up in the lungs and digestive system. It causes poor lung function, persistent lung infections and the inability to digest food, particularly fats.
Not only is it life-limiting, it is also life-shortening, with only half of the people with Cystic Fibrosis expected to live past 40.
Me and my husband Phill were inconsolable when the consultant gave us the news.
The only thing that has kept us going over the past 10 months has been the hope of two drugs – Orkambi and Kaftrio – that will drastically not just lengthen Ollie’s life expectancy but also massively improve his life experience.
Yet last Friday, NICE announced that, although these drugs are clinically effective, they were too expensive for the organisation to recommend them to be available on the NHS.
I cannot tell you how devastated – and angry – we are to discover they were putting a price on our baby’s life.
When he was born in January 2023, Ollie was our wonder baby – the only good to come out of a very, very bad time.
About 18 months before, in August 2020, Phill had been diagnosed with testicular cancer that had already spread to his abdomen.
At the time, I couldn’t imagine anything worse.
Because of Covid he had to go for appointments, for treatment, all alone. It was heartbreaking, watching him go into hospital to have, first an operation, then four months of intensive chemotherapy, as I stayed at our home with our son, George, then two.
Thankfully, in February 2021, doctors could find no more trace of the disease.
Cystic fibrosis: The facts
What is it? Cystic fibrosis is an inherited condition that causes sticky mucus to build up in the lungs and digestive system. This causes lung infections and problems with digesting food.
How many people have it? Around 10,800 people in the UK have cystic fibrosis; that’s 1 in every 2,500 babies born with it.
Symptoms:
- Recurring chest infections
- Wheezing, coughing, shortness of breath and damage to the airways (bronchiectasis)
- Difficulty putting on weight and growing
- Yellowing of the skin and the whites of the eyes (jaundice)
- Diarrhoea, constipation, or large, smelly poo
- A bowel obstruction in newborn babies – surgery may be needed
Diagnosis: In the UK, all newborn babies are screened for cystic fibrosis as part of the newborn blood spot test (heel prick test) carried out shortly after they’re born.
For more information, visit the NHS website here.
He would still need regular check-ups though and we were told we had to wait at least a year before we could consider having another child, to ensure the chemotherapy was completely out of his system.
It seemed like an age but in February 2022, we started trying and three months later, I conceived.
My pregnancy went swimmingly – my due date in January 2023 even landed on mine and Phill’s anniversary of first becoming a couple.
It felt like we’d finally got over the worst hurdle life had thrown at us and that we had so much to look forward to.
When he arrived, Ollie was absolutely gorgeous, a beautiful little bundle of joy weighing 7lbs 3ozs.
When the health visitor came round to do the heel prick test on day five, she commented that he had lost a pound in body weight.
‘Most babies lose weight but that’s more than the healthy limit of 10%,’ she commented. ‘Try topping up your breast milk with formula.’
But after trying a bottle, Ollie struggled to latch on, so we booked into a feeding clinic, to give us some help returning to breast-feeding.
‘Some of the blood testing team are here and they’d like to see you first,’ a staff member told me when I arrived. ‘We’ll wait for your husband to park the car, then I’ll take you to them.’
Immediately, it felt strange but nothing could have prepared me for what they had to say.
‘Your son’s heel prick test showed he has a lot of markers for Cystic Fibrosis,’ they said. ‘We’ve made an appointment with a consultant tomorrow and we’d advise you don’t Google it before then.’
After those words, I didn’t even make it to the car park before I’d typed it into my phone.
And when I read about the difficulty sufferers had to just draw a breath, the worsening symptoms, the horrendous related side effects, I had a panic attack.
The next day, a consultant confirmed the news and I broke down again, looking at my teeny baby, who looked so perfect… so healthy.
The consultants were brilliant, spending the whole afternoon with us, answering all of our questions.
‘Getting this diagnosis is not the same as what it was even 10 years ago,’ they explained. ‘Over the last couple of years, breakthrough drugs have been approved that are making huge advances.’
They told me about a drug called Orkambi, which Ollie could have from the age of one. It is a disease modifying drug that can improve lung function, reduce the number of pulmonary exacerbations and improve the nutritional status of people with Cystic Fibrosis.
More excitingly, Kaftrio – approved for children over six – has been described as ‘life-saving’.
Four-fifths of people who responded to the Cystic Fibrosis Trust said they felt significantly more positive about the future of living with CF because of access to Orkambi, Kaftrio and another drug Symkevi.
Going home with so much information, we started the long process of coming to terms with the diagnosis.
From that day, our whole lives changed. We had to do physio exercises on him twice a day, to help clear his lungs, give him a vitamin and medication every morning to help him absorb fat.
Soft plays became a no-go, as did farms and sandpits. Even stagnant water was risky for our baby, so we had to be careful when feeding the ducks in the park or jumping in puddles.
One of the worst things was telling George that we had to give away his pet guinea pigs because the hay they nested in and nibbled on was also dangerous because of the bacteria spores in it. He sobbed for weeks.
As the months went by and Ollie remained infection-free, I slowly got my head around the news. ‘Soon he’ll be allowed on Orkambi and we can take him to a soft play,’ I told Phill excitedly, watching him toddle around the room. ‘He’ll love that.’
And we had even better news when we took him to his consultant for his monthly weigh-in.
‘They’re doing trials of Kaftrio on younger children to hopefully have it approved for use on children from the age of two,’ he told us.
I gripped Phill’s hand excitedly. It seemed too good to be true…
And now, just weeks later, it seems it was.
Since NICE’s announcement on Friday, I’ve been devastated. All of the questions over my son’s future have now rushed back, overwhelming me.
I cannot believe that they are putting a price on a child’s life – on my child’s life. It is sickening.
Yes, Orkambi costs over £100,000 per year per patient, and the cost of Kaftrio is the same. But there are only 10,800 people with Cystic Fibrosis in the UK – and they’re not going to stop giving it to people who are already prescribed it.
The amount they will be saving will be peanuts – yet, the impact the drugs would have on my son’s life could be priceless.
But it’s not too late. This isn’t a final decision. There is now a four-week consultation period and I’d advise anyone with Cystic Fibrosis to comment on NICE’s finding report, to let them know their experience with the drugs.
Even if you don’t have this condition but believe that money shouldn’t come into life-giving medication, you can sign this petition.
Not for me. Not even just for my son. But for everyone born with Cystic Fibrosis.
As told to Sarah Whiteley
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Sarah Carter is a health and wellness expert residing in the UK. With a background in healthcare, she offers evidence-based advice on fitness, nutrition, and mental well-being, promoting healthier living for readers.
