Portsmouth mums spearhead Parliament march to get life-saving cystic fibrosis drug Orkambi on the NHS 

A PORTSMOUTH mum fighting to get a life-changing drug available on the NHS will be marching to Parliament in London to protest next week.

Gemma Weir, of Paulsgrove, has tirelessly campaigned to get the drug Orkambi for free on the NHS to help save lives – including her daughter.

Gemma Weir and her four-year-old daughter Ivy, from Portsmouth, delivered hundreds of letters to Downing Street calling for drug Orkambi to be free

Gemma Weir and her four-year-old daughter Ivy, from Portsmouth, delivered hundreds of letters to Downing Street calling for drug Orkambi to be free

The drug can be used to treat people with cystic fibrosis, an inherited disease which causes the lungs and the digestive system to be clogged up with mucus.

Gemma, 34, has a young daughter, Ivy, with the condition resulting in a rigorous daily treatment regime of taking tablets, doing physiotherapy, using a nebuliser (a way to deliver medication) and occasionally, having intravenous antibiotics.

Gemma wants Orkambi added to the list of treatments available on the NHS and was able to get the 100,000 signatures needed on their petition for it to be debated in parliament.

Currently, the National Institute for Health and Care Excellence (Nice) has not recommended the drug to be on the NHS due to its cost of £104,000 per patient per year. 

Orkambi is state-funded in other countries such as Ireland, Holland, Germany, America and Greece.

The event on Monday will include a march to Westminster, a vigil, protest outside NHS England and handing in of a petition to Vertex – the company that makes the drug that is locked in a battle with the NHS over pricing.   

Speaking ahead of the protest next week, Gemma said: ‘Despite almost three years of campaigning, it feels as though we are no closer to gaining access to these life-saving drugs.

‘The cystic fibrosis community entered 2018 with huge determination to step up our campaigning activity and finally get access to a drug that is already available in many other countries.

‘In January our Orkambi petition gained over 118,000 signatures which led to a government debate in March. We have held three protests this year and our protest march in June included an emotional confrontation with key Vertex personnel on the steps of their London headquarters.

‘Yet here we are in November and it seems that Vertex and NHS England are still miles apart in terms of agreeing a price for cystic fibrosis drugs.

‘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, patients in the UK have instead only 50 per cent chance of living until their 31st birthday.’

David Ramsden, CEO of the Cystic Fibrosis Trust, said earlier this year there had been ‘three years of bitter disappointment, deterioration and deaths that may have been avoided’.

The situation was also highlighted in May when thousands of letters were delivered to 10 Downing Street. Theresa May, speaking during prime minister’s questions said: ‘There is ongoing dialogue between NHS England and Vertex. I am keen to see a speedy resolution to those negotiations.’