Patients with cystic fibrosis refused free drug by hospital

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David Noonan once had trials with Coventry City, but his cystic fibrosis forced him to hang up his boots.



The disease is destroying the lungs of the student, who celebrates his 21st birthday this week.

A new drug could offer a brighter future for David and other patients such as his sister Rebecca, who have the same strain of cystic fibrosis.

The NHS has already recognised the huge benefits the drug, Ivacaftor, can offer patients like David, yet Heartlands Hospital has refused to prescribe the drug – despite the manufacturer offering it for free.

David said: “It was heartbreaking having to give up football.

“I have taken up cycling, but I may have to stop that soon too.

“I have done my bit by keeping fit, now I want the hospital to do theirs by giving me access to this drug.”

David spends hours taking 50 pills and four different nebulisers every day. He also needs regular physio and visits Heartlands Hospital every three months for treatment.

Despite all that, he is deteriorating and his lung capacity has plummeted from 60 per cent to just 37 per cent.

David, from Eastern Green, said: “The last month has been the worst of my life. Everything I love doing is being snatched away from me.”

David has a rare strain of the deadly lung disease, which affects one in every 20 people.

His 16-year-old sister Rebecca and another patient, Chris Horner, from Rugby, have the same strain.

For these patients Ivacaftor could preserve – or even improve – their lung capacity and extend their lives.

However, it currently costs £182,000 per year for each patient.

That is a major stumbling block as NHS budgets are currently rising far slower than medical costs, putting enormous pressure on resources.

David said: “How can how you put a price on a human life?

“We’ve had such good care over the years, but now we are deteriorating while we are waiting for this drug.”

The Ivacaftor Patients Interest Group is campaigning for the drug to be prescribed as quickly as possible.

It points to America where the drug all but eradicated the other pills that some patients have to take.

That could eventually save about £50,000 per patient each year, offsetting some of the cost, though more evidence is needed to confirm this.

In the meantime the manufacturer, Vertex Pharmaceuticals, has offered to provide the drug for free as part of a ‘compassionate programme’.

That would allow patients like David immediate access to the drug.

However, Heartlands Hospital has refused to prescribe the drug as it would be “unethical” to withdraw it if the company began charging.

It also said not all eligible patients would be covered by the scheme.

A spokeswoman said: “We fully support our patients and are doing everything in our power to facilitate a fair solution.”

She said the hospital had also met with Vertex Pharmaceuticals to request more details about another patient access programme that was launched this month.

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Coventry student David Noonan wins fight for new cystic fibrosis drug

A COVENTRY student has won his battle for a life-changing new drug to treat his cystic fibrosis.

It comes a few weeks after the Telegraph highlighted the story of David Noonan, who has a rare strain of the disease that is slowly destroying his lungs.

A new drug called Ivacaftor could stop the problem getting worse – and even reverse some of the damage.

The NHS accepts the drug offers huge medical benefits but it does not currently fund the treatment.

That left David, from Eastern Green, and similar patients at Heartlands Hospital in limbo, especially as patients in other parts of the country had been allowed the drug on trial.

However, Vertex Pharmaceuticals – which manufactures the drug – has now agreed to provide it to him for free.

David, aged 21, said: “I’m over the moon. I didn’t dare to tell anyone until I had the pills in my hand.

“I already feel physically better, but the biggest change is psychological – I feel like a weight has been lifted off my shoulders.”

It can take years for the NHS to decide whether to fund new drugs.

Bosses fast-tracked on Ivacaftor after it was approved by the European Medicines Agency in July, but have yet to reach a decision.

In the meantime patients have seen their condition deteriorate.

David’s lung function has plunged from 60 per cent to just 37 per cent.

He spends hours each day taking 50 different pills and doing gruelling physiotherapy, but has still been forced to give up football and faced having to quit cycling too.

David said: “I was starting to feel resentful when I saw people doing the things I couldn’t – but hopefully now I can do those things too.”

David has been given Ivacaftor as part of a special access programme run by Vertex Pharmaceuticals.

Now he has the drug he is looking forward to focusing on his degree at Nottingham Trent University.

Coventry MP Geoffrey Robinson, who supported David’s campaign, was delighted at the decision.

He said: “There is no more deserving candidate than David, he is an extraordinary young man.

“This shows that when a clear case is put to them in the public interest, drug companies can look beyond pounds, shillings and pence.

“I hope the NHS will now reach the right decision to ensure this drug is available to others who need it.”

One of those patients is David’s sister Rebecca.

The 16-year-old has the same strain of cystic fibrosis and studies suggest the sooner she gets the drug, the better her lungs will function.

However, Vertex will not be able to offer the drug free forever.

So Rebecca, like many others, will have to wait and see whether NHS bosses agree to fund the drug at a meeting next month.

They have already accepted the medical benefits, but the £182,000-a-year for each patient could prove a stumbling block.

A spokeswoman for Vertex said the process was “moving in the right direction”.

In the meantime the firm will continue to consider patients for its ‘compassionate’ scheme on a case by case basis.