Two Cystic Fibrosis campaigners from Northern Ireland have added their voices to calls for fair global access to a drug that has transformed their lives.
Nicole Adams, from Newtownabbey, and Ben Mudge, from Belfast, are campaigning for a Cystic Fibrosis modulator therapy called Trikafta (also known in the UK and Europe as Kaftrio), to be made available to CF patients around the world.
Nicole, 31, and Ben, 33, have opened up about how this drug has improved their health and what it feels like to believe that they might actually have a future.
Read more: Couple welcome 'little miracle' after battling back from intensive care
They believe everyone battling this cruel disease should have access to the drug – regardless of what country they live in - as the average life expectancy for someone with CF was mid-thirties prior to Kaftrio.
Nicole came close to death in 2019 when her lung function was as low as 11% but she has experienced an amazing health transformation on Kaftrio – so much so, that she has been able to have a child of her own.
Most women with Cystic Fibrosis were unable to cope with a healthy pregnancy prior to access to this drug.
Nicole and her partner Ciaran McVarnock, the recently retired pro boxer, welcomed their baby son Colby last September.
It has been life-changing for Nicole, a hairdresser, who is now calling for global affordable access to the drug that saved her life almost four years ago.
Pictures of Nicole lying gravely ill and struggling to breathe in intensive care in a Belfast hospital in December 2019 went viral when Ciaran shared them in a desperate bid to get her life-saving treatment and convinced drug company Vertex to give her Kaftrio.
Nicole said: “Three years ago my lung function was 11% and I was hours from death, then I received the gift of life – which was Trikafta.”
Doctors told her and Ciaran that it was likely that Nicole would not survive and there was little that could be done for her.
But Ciaran refused to accept Nicole's diagnosis and "did all that he could" in order to secure Kaftrio for her. A few weeks later they were together at home after the drug helped her return from the brink.
Since then the couple have continued their campaign in order to "spread the good news " about Kaftrio, which has now been used to treat children as young as six with CF and given them opportunities in life they would have never had before.
It has also allowed the pair to do something that they never dreamed they would be able to, have children together.
Nicole and Ciaran have continued to speak out about life with CF in order to help other families who are dealing with the condition.
Nicole filmed her contribution to the ‘global access’ video with her baby Colby nestled at her side.
She said: “Trikafta has dramatically changed my life. I am sitting here with my own son, something that I never thought I would have.”
Cystic fibrosis is a progressive disease and as recently as the 1960’s, children born with it were not expected to live to adulthood.
Thick sticky mucus builds up in the lungs and other organs of CF patients, causing inflammation that can lead to infections. Damage occurs over time and can lead to a wide range of issues.
This creates a heavy, daily burden of treatment, that often increases with age. But the many nebulisers, medicines and hospitalisations only treat the symptoms of the disease.
Elsewhere online coach Ben Mudge has for years inspired others with CF to keep up with regular exercise to help them maintain their health but even he has been blown away by the effectiveness of the new CF modulator.
Ben is well known in the CF community for inspiring young people with the disease to exercise - an important part of their daily physiotherapy is to exercise to help shift the thick, sticky mucus in their lungs.
He also has often dressed as ‘Thor’ – many people having commented on his likeness to the superhero! – to engage young CFers with the benefits of exercise.
“Trikafta has given me something that I genuinely never thought I would have and that’s a future,” he said.
CF modulators such as Orkambi, Symkevi, Kalydeco and Trikafta work at the root cause of cystic fibrosis. Trikafta consists of three drugs and is the most effective of the modulator treatments - around 90% of CF patients are eligible to use Trikafta.
In 2020 CF patients in the UK received the life-changing news that this revolutionary new drug was approved to be used on the NHS.
For many this has given them a new lease of life and a better baseline standard of health.
However, although patients in the UK, USA and other high income countries are now benefiting from this new drug, there are still tens of thousands of people with CF in low and middle income countries who do not have access – and that situation is not likely to change in the near future.
The sticking point is the cost of the treatment – even in the UK, the approval of Trikafta (Kaftrio) followed several years of high-profile campaigning for access to earlier modulator therapies – notably Orkambi.
For this reason, Nicole and other patients, were granted ‘compassionate’ access to Trikafta – before it was available on the NHS.
The campaign for fair global access to Trikafta and other CF modulator therapies is coordinated by grass roots organisation Vertex Save Us and patient advocacy group, Just Treatment.
Gayle Pledger, a spokesperson for Vertex Save Us said: “We started this campaign because families from other countries contacted us after CF families in the UK successfully fought for access to these life-saving drugs.
“We have now formed a large global community of CF patients. Since joining forces with Just Treatment, who helped us gain access in the UK, we have consulted with organisations and experts on four continents.
“We are currently supporting CF patients and families to challenge Vertex Pharmaceutical’s patents in South Africa, Brazil, Ukraine and India in order for them to be able to access the medicines that they desperately need.”
The link to the global access petition can be found here.
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