Portsmouth campaigners hope Argentinian manufacturer can provide alternative to life-saving cystic fibrosis drug

HOPES are high that an alternative to a drug that could treat cystic fibrosis could soon be in the hands of UK sufferers.

Wednesday, 5th June 2019, 5:27 pm
Updated Wednesday, 5th June 2019, 11:33 pm
Gemma Weir with her daughter Ivy, from Portsmouth, after she delivered hundreds of letters to Downing Street calling for drug Orkambi to be free

Portsmouth campaigners have been battling for years to get the Orkambi drug licensed on the NHS.

But with manufacturers Vertex pricing the drug at £104,000 per patient per year, the NHS has said it is too expensive to introduce.

Now, a version of the drug is being made in Argentina, as Vertex didn’t patent it there – which families hope will give them the long-awaited treatment needed.

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Ivy Weir with her mother, Gemma. Picture : Habibur Rahman

On Monday, June 10, parliament will debate if NHS England should purchase this generic version of the drug.

Until that happens, a group of parents are looking to take matters into their own hands by forming the CF Buyers Club, aiming to fund a stable supply of the drug to families who desperately need it.

One campaigner, Emma Birchall, said: ‘One of our group tracked down this company making a generic version of the medicine and suddenly it seemed like there was a feasible solution in our hands.

‘We got evidence of the safety and efficacy of the medicine from the manufacturer, and then paid for independent tests to verify everything.

‘This is still a lot of money – around £20,000 per year – but it is so much cheaper than Vertex’s price of £104,000 it might be an option for some people.’

Politicians from across the political spectrum, including Labour's Portsmouth South MP Stephen Morgan, have given their backing to the Orkambi campaign.

Gemma Weir, from Paulsgrove, has been a prominent campaigner, as her daughter Ivy has cystic fibrosis.

‘Despite more than three years of campaigning, it feels as though we are no closer to gaining access to these life-saving drugs,’ she said.

‘We have a medicine available with the potential to give people a near normal life expectancy and because two companies cannot reach a mutual agreement, CF patients in the UK have instead only 50 per cent chance of living until their 31st birthday.

‘The cost of the generic drug will still likely be too great for many people, but the more buyers who sign up, the more the price will come down.’