Home UK Cystic fibrosis scandal: Wonder drug pleas GROW as victims hit record high

Cystic fibrosis scandal: Wonder drug pleas GROW as victims hit record high

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Face of Nation : The need for cystic fibrosis drugs on the NHS is more urgent than ever, due to record numbers of sufferers. New statistics reveal there are now 10,509 people in Britain with CF, compared to 10,469 last year.

The number has almost doubled from the 6,000 recorded in 2008. Experts say the rise has most likely come about because CF patients now have better nutrition levels and healthier lungs than a decade ago. The Cystic Fibrosis Trust has started a pilot project called “SmartCare” to enable sufferers monitor their health from home. It uses digital equipment to help patients spot bodily changes – such as reduced lung function and weight loss – earlier, without having to go to their nearest CF centre for tests. CF sufferer Sammie Read, 39, from Ipswich, helped test the scheme and said: “It has changed my life for the better. Self-monitoring makes me aware if I need to eat more, rest or even contact my hospital. I haven’t needed as many admissions and I am in control of my CF, instead of my CF controlling me.”

Dr Janet Allen, director of strategic innovation at the Cystic Fibrosis Trust, said that if the number of sufferers continues to grow, the NHS “may struggle to cope”.

“This new SmartCare technology could make all the difference,” she said. “Our hope is to predict when someone’s health is in decline and act early to prevent further damage.”

Professor Andres Floto, who worked on the SmartCare technology at Cambridge University, said it could “revolutionise care”.

“It could save CF sufferers countless visits to clinics and reduce the risk of cross-infection, as well as saving the NHS money,” he said.

“People with CF generally wobble around a baseline of health, but it’s hard to identify when a drop in health is a ‘slightly worse’ wobble or the start of an exacerbation.

“This new technology can predict exactly that.”

The Daily Express has been crusading for NHS England to strike a deal with US pharmaceutical giant Vertex for CF drugs, like Orkambi.

Only last month, the company snubbed an NHS offer of £108million-a-year. As frustration has grown, a “CF Buyers Club” has been created in a bid to import a copycat Orkambi from South America.

It would cost around £23,000 per patient per year, compared to Vertex’s £104,000. In the three years Orkambi has been available elsewhere, 250 British sufferers have died.

IN HER latest diary entry for the Daily Express, CF sufferer Carlie Pleasant, 29, reveals she may have another infection – just three weeks after leaving hospital.

I can already feel the start of a cough developing, which is really disheartening, but I am focusing on my treatment.

I have been doing nebulised antibiotics twice a day as well as having more physiotherapy and two milkshake-based drinks containing 900 calories each.

This can be hard to fit in to a daily routine but when you have CF, you have to work the hardest when you feel unwell.

I was also given the chance to talk to MP Paul Scully ahead of last Monday’s CF debate at Westminster, which I hope will spark Vertex and the NHS into more promising talks.

Due to strict cross-infection policies, CF sufferers cannot meet so I found it really interesting speaking to others via Skype about how Orkambi would change their life.

I would also like to thank the Daily Express readers for their support – without their 100,000 signatures, the Parliamentary debate would not have happened.

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