Orkambi could help thousands of people who suffer from cystic fibrosis and it must be available on the NHS

I have been greatly affected by the plight of one of my constituents, who has a child recently diagnosed with cystic fibrosis. It is a debilitating and life threatening genetic disease which affects approximately 1 in 2500 babies born in the UK each year.  Having a child is a blessing and a wonderful, life-affirming event; no-one expects their baby to be born with a lifelong illness and the news that such a diagnosis can bring is devastating and can be very stressful.

 Those with cystic fibrosis have thick mucus secretions which can clog their lungs, making a sufferer prone to breathing difficulties, lung infections and eventually, severe lung damage. They may also have digestive and growth problems. Those who suffer with cystic fibrosis face regular doctor appointments to monitor their condition and sometimes they will even require treatment in hospital. Sadly they must also consume a multitude of medications (tablets, liquids and inhalers) every day. They must also do physiotherapy exercises which helps to loosen any mucus and makes breathing easier.

Sadly, to date, there is no cure for this disease and the life expectancy for a person with cystic fibrosis is just 36 – 47 years old, with the main cause of death being restricted lung function. That statistic hit me quite personally; I’m 37 years old. When I was a child, I met and spent time with other children of my age who suffered from cystic fibrosis; knowing that I’m within that life expectancy was quite a sobering thought.

But medical research advances all the time. A new drug called Orkambi has been developed and has passed testing in the USA. The trial of this drug has had astonishing results. It does not help all sufferers, just those with a specific genetic mutation – roughly half of all sufferers. For those it helps, it is proven to slow down the decline of lung function by up to 42%. The Cystic Fibrosis Trust has conducted a study which shows that some 2834 people in the UK could benefit from this new drug. Other new medications are in the process of clinical trials.

So what’s the problem? Sadly, it’s the age-old story: Orkambi is an expensive drug and it is not currently available on the NHS. This excuse, however, is unacceptable. Even the National Institute for Clinical Excellence admits that it is ‘clinically effective and important for managing cystic fibrosis’, whilst refusing to fund it. As a consequence medications such as Orkambi are not available to sufferers and in turn they are denied a longer and more comfortable life.

Politicians may clash when it comes issues regarding the NHS. Indeed, it is often because of political interference just as much as due to underfunding that the NHS has found itself in difficult times: constant restructuring, new management, new contracts, to name but a few. Many times in the past I have argued that the NHS needs to prioritise the patient and spend taxpayers’ money more effectively, and to stop wasting precious funds on private finance initiatives.

I would like to highlight the amazing work done by the Cystic Fibrosis Trust, and their Stopping The Clock campaign. A petition to make Orkambi available on the NHS has quietly attracted over 100,000 signatures and will be debated in Parliament on March 19th. Can public pressure actually make a difference? I’d like to think so.

Supreme Court ruling response

“I am disappointed by the outcome of this case. There were strong legal arguments put forward on both sides, and ultimately I had hoped that the government’s case would prevail because it would have reduced the risk of even greater delay to the British people’s decision to leave the European Union.

“Nevertheless, the ruling has now been made. In the United Kingdom, when something goes against us – an election, a referendum, the final process in a legal case – we accept the result and move on. That is the nature of living in a democracy. I fully accept that this result has gone against my views, and now it is the responsibility of our Westminster Parliament to enact the will of the British people and get us out of the European Union.
“Just as I must accept the result of this court case, so too must our MPs and Lords accept the result of the referendum. Exactly seven months on from the declaration of the referendum result, we are still waiting for the decision of the people to be enacted. I call upon Parliament now to pass legislation for the United Kingdom to leave the European Union as a matter of extreme urgency. The democratically-expressed will of the British people can be frustrated no longer.”

Trust in the British political system will be shattered forever if politicians continue down this dangerous road

Dear Editor,

The UK and especially the North East voted overwhelmingly for Brexit.  The British people sent a very clear message to Westminster – we want to leave the European Union.  It is a shame that not all of our politicians seem to have heard this message – perhaps some have chosen to outright ignore it.

It has frustrated me to hear Lib Dem, Labour and Tory MPs talking about how they plan to keep the UK within the EU.  Labour leadership candidate Owen Smith has possibly been the worst offender; he has often spoken about his desire to ignore the referendum result, but recently he raised the possibility of even deeper UK-EU integration through UK membership of both the Euro and Schengen!

Brexit has the biggest political mandate in UK electoral history –  over 17 million people voted to leave the European Union. It is a democratic outrage that many MPs (who are supposed to serve the people) are threatening to ignore a clear mandate from the British people.

Many of those who voted for Brexit already felt left behind by the political elite – public trust in the British political system will be shattered forever if politicians continue down this dangerous road.


Jonathan Arnott MEP

UKIP, North East

Jonathan Arnott MEP to visit lunch club in Middlesbrough

A Middlesbrough lunch club is to have a guest visitor tomorrow (Wed) – the town’s UKIP Euro-MP Jonathan Arnott.

Mr Arnott will be attending a barbecue organised by Tickle The Taste Buds Lunch Club at The Christian Center Building, Loxley Road, Thorntree.

The club, which relies on donations of food and money, provides a free two course meal every fortnight and Mr Arnott said he was delighted to accept the invitation to experience the work of the organisation at first hand.

The group started 17 years ago to feed the homeless and get people housed but now helps people with a wide range of problems and issues.

“I cannot praise the work of this organisation highly enough,” said Mr Arnott.

“They are doing a fantastic job helping people in society who need it the most and I am looking forward to meeting the organisers and seeing if I can help in anyway in my role as local MEP,” he added.

About 40 people are expected to attend tomorrow’s lunch which starts at noon.