A few weeks ago I sat in a meeting room in east London nervously waiting the arrival of two representatives from Gador, an Argentinian drug company. It’s no exaggeration to say that my child’s life could be shaped by the following few hours.

Nearly 10 years ago, shortly after my son Aidan was born, we learnt that he had cystic fibrosis (CF) – a life-limiting genetic condition that affects the lungs and other major organs. It is difficult to process the joy of parenthood, tempered by the confusion, sadness and frustration of such a diagnosis. But with time we came to terms with the news and the additional restrictions and medical attention CF imposes on you.

At the time, all the treatments for CF were focused on managing the symptoms of the disease – helping to deal with the effects, but doing nothing to alter its progression. But in 2016, a new drug, Orkambi (ivacaftor/lumacaftor), was approved in the UK – the first of a new class of medicines that tackles the underlying cause of the disease that could work for Aidan. Now there was a treatment option that could make a real difference, but it came with a new problem – the price. The US drug company Vertex Pharmaceuticals, despite being bankrolled by US taxpayers and charitable donations to develop the drug, decided to ask for £104,000 per patient per year for Orkambi in the UK.

That decision sparked more than three years of frustrating talks as the NHS tried and failed to negotiate a deal with Vertex for the medicine. In that time, people with cystic fibrosis have been left with no access – and some who could have benefited have died.

‘Vertex Pharmaceuticals, despite being bankrolled by US taxpayers and charitable donations to develop the drug, decided to ask for £104,000 per patient per year for Orkambi in the UK.’ Photograph: Brian Snyder/Reuters

High drug prices are a growing problem for the NHS. With new cancer medicines being priced in the millions, we face a future where access to many treatments could become very uncertain. Seeing Donald Trump insist that the NHS would be on the table in a trade negotiation between the US and UK (before unconvincingly reversing his position) should make us even more concerned. Trump’s strategy for lowering out-of-control US prices is to force other countries to pay more. And big pharma have suggested they use trade negotiations to strip back many of the protections keeping prices down in the UK.

I was privileged enough to be able to do something about it for my son. It’s not been easy, but for the past year I’ve been paying Vertex £8,000 every 28 days to ensure Aidan has access. But this is not sustainable in the long term, and it isn’t an option for most parents or patients. So, along with a group of other parents I set about trying to find a better solution.

And that’s how I ended up in the meeting room in east London. I’d identified a drug company making a generic version of Orkambi – a lower cost but identical copy of the Vertex product – in a country where Vertex do not hold a patent monopoly. Our group reached out to them, got evidence they were reputable, and arranged a meeting. Shortly after the reps walked in, I was able to hold a box of the medicine Aidan needs. For the first time after many frustrating years it seemed like we had the beginnings of a solution in our hands.

UK law allows importation of medicines for personal use – including generic versions of medicines patented here. This allows patients and families to form buyers clubs, as they work together to ensure safety and quality of the medicines, negotiate prices and then buy as individuals. This week we launched a buyers club for cystic fibrosis.

For some the generic price, at about a fifth of the Vertex price, could mean they can get their child access to the life-changing treatment they need. But for most, this price is still far more than they can afford. That’s why we’re calling on the government to ensure equitable access to all patients to this version of Orkambi. There are at least three ways they could do this – including by running a large clinical trial with the generic, or issuing a crown-use licence that would break Vertex’s monopoly, allowing the NHS to buy a generic.

It is Vertex’s greed that is putting the lives of thousands of children and adults in the UK at risk. I’m delighted we have been able to find a solution that will work for some. But responsibility for standing up to Vertex and putting our children’s lives before their profits ultimately lies with our government. For years we have battled with the disease and have raised funds to defeat it – now that this treatment is finally here it is inconceivable that greed forces us to continue fighting. It’s simply immoral.

• Robert Long is from East Sussex, and is the father of Aidan, who has cystic fibrosis