21st May, 2018

Coventry boy is the face of UK fight to get cystic fibrosis drug on NHS

Felix Nobes 11th May, 2018 Updated: 14th May, 2018

A THREE-year-old Coventry boy has become one of the faces of an international movement trying to get access for people with cystic fibrosis to a drug ‘deemed too expensive’ for the NHS.

Joseph Louth from Eastern Green, Coventry, has cystic fibrosis (CF) – a life-limiting lung condition.

Joseph and his mother Kate are part of a campaign to introduce new ‘precision medicine’ to treat CF which is not yet available on the NHS.

The drug, Orkambi, has been praised as the ‘next leap’ in treating CF by campaigners and the CF community.

It treats specific and damaging genetic mutations – which affect lungs in particular – associated with the disease.

The drug was licensed for use in the UK in 2015 but NICE (National Institute for Health and Clinical Excellence) decided it was not ‘cost-effective’ enough to be used on the NHS – costing the NHS in excess of £100,000 per person.

NICE’s position is that although the drug reduces hospital admissions and sufferers’ dependence on antibiotics, the benefits are uncertain.

Consequently, CF campaigners are currently locked in a battle to gain access to the ‘potentially life-saving drug’.

A petition launched in January gained over 100,000 signatures in just over 10 days, which led to a government debate on March 19 attended by a high turnout of 60 MPs from around the country.

Joseph has taken part in a video – along with other sufferers – to explain some of the ways CF affects them on a daily basis.

Kate said: “When I found out Joseph had CF, I just burst into tears, my heart sank and I felt sick – I just wanted to hold him tightly.

“I just remember hearing things that Joseph wouldn’t be able to do and that his condition is life limiting.

“All I kept thinking is I’ve had him for two weeks and I don’t know how much longer I’ll have him.

“We have been very fortunate that Joseph has not had any hospital admissions.

“But we are in touch with other CF families and we are aware how quickly that situation can change.”

Joseph has to take daily antibiotics and vitamins which, according to his mum, taste horrible.

Due to the disease, which also affects his digestive system, he needs to take digestive enzymes (Creon) with every meal in order to digest his food and maintain and gain weight.

Since Kate and Joseph became involved in the CF community, they have raised almost £25,000 for research and treatment.

She said: “We need the right medications to be available for him.

“CF is a progressive disease, which means it gets worse as time goes on.

“Precision drugs like Orkambi, and others that are currently in development, can for the first time help to stop the damage to the lungs that is the main cause of death for those with CF.

“That is why we say we are trying to change history.

“With access to precision medicines CF could become a chronic, manageable disease rather than a life-limiting one.”

In a recent development in the Orkambi campaign, ministers from the Department of Health have written a letter to drug manufacturer, Vertex, asking that they negotiate with the NHS.

After the parliamentary debate in January, government health chiefs have joined campaigners in calling for ‘an urgent resolution’.

A spokesman for Vertex Pharmaceuticals, the drug’s manufacturers, said: “We can confirm that NHS England and Vertex had a constructive meeting on Wednesday April 25. Both parties recognise there is still some way to go to reach an agreement and Vertex is committed to working together to achieve this. We share the CF community’s sense of urgency.”

Sign the petition on this link: https://petition.parliament.uk/petitions/209455

Use the hashtag #OrkambiNow on social media.

There is a protest march on Friday, June 22 in London.

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