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.

How can any Councillor look their constituents in the eye and defend Council policies which prioritise investing in a hotel company over providing frontline services for residents

Dear Editor,

Last year I was very vocal in my opposition to plans from Stockton-on-Tees Council to invest in a Hilton hotel.   At a time when local residents were been faced with simultaneous Council Tax rises and cuts to key services I felt the the mere idea of investing in a luxury hotel was absurd.  However, in the end the Council ignored all of those who opposed this plan and invested in Hilton anyway.

Imagine my surprise last week when I learned that the Council which was more than happy to invest huge amounts of money in a hotel had decided to raise Council Tax by 6% – the highest rise of any Teesside council.

When many people are struggling to simply make ends meet and evermore people are relying on foodbanks to feed their families, how can any local Councillor look their constituents in the eye and defend Council policies which prioritise investing in a billion dollar hotel company over providing frontline services for local residents?

Council Tax appears to be on the rise all across the North East, but I am sure that your readers will agree that this decision by Stockton-on-Tees Council was particularly egregious.

Regards,

Jonathan Arnott MEP

LETTERS

The narrative surrounding hospital services in Hartlepool must change

Dear Editor,

I welcome the announcement from Alan Foster that maternity services will not be centralised at James Cook University Hospital as had long been feared.

The loss of Hartlepool’s A&E services is still a major issue for the area and it is very clear that local people want key medical services to remain at the University Hospital of Hartlepool.

The narrative surrounding hospital services in Hartlepool has long centered around talking about which services will be cut, removed or reduced; this must now change to a discussion about how to improve existing services such as the midwife-led maternity services and how to increase provision for those requiring emergency care.

Regards,

Jonathan Arnott MEP

LETTERS

The Lords is bloated and is not fit for purpose. In the name of democracy reform is long overdue

Dear Editor,

I am pleased, and not surprised, that a poll has shown overwhelming opposition to new appointments to the House of Lords.

This has been revealed by new BMG Research polling commissioned by the Electoral Reform Society and it would appear it has put a halt, at least for now, on plans for about 15 new peers to be appointed.

These mooted appointments are opposed by the majority of Conservative, Labour and UKIP supporters who expressed views. The poll shows that 78% think there are already too many Lords – compared to just 18% who think the current size of nearly 800 is ‘about right’.

I am, and always have been, with the majority on this – the Lords is simply bloated and is not fit for purpose. In the name of democracy reform is long overdue.

It is packed with sycophantic cronies as recently demonstrated by the stated aim of several to derail the desire of the majority of the public for Brexit. The Lords was once a respected and respectable chamber but quite frankly that era has gone and the public has had enough of this unelected and unaccountable bunch.

Yours sincerely

Jonathan Arnott MEP

PRESS-RELEASEV2

Claims about North East economy slammed by MEP

An Independent North East politician has slammed false Remain claims that the North East economy will drop by 16% in the event of a hard Brexit, suggesting that they are not only misinterpreting Treasury data, but that the data has a proven track record of being flawed.

Jonathan Arnott, an independent member of the European Parliament for North East England, said:

“Actual recent empirical evidence suggests that we shouldn’t believe a word of it.  Let’s look at the facts from recent Treasury predictions.

“The Treasury projected that the UK would fall into recession and lose between 3% and 6% of GDP in the last 18 months. Real data shows the economy has grown in every single quarter. They projected the loss of between half a million and 800,000 jobs over the last 18 months. The reality is that jobs have been created.

“Now they’re projecting not over 18 months but over 15 years. If they’re so wildly wrong in 18 months, why does anyone suppose they’ll be right over 15 years? For pity’s sake, even Government Ministers are saying these figures should come with a health warning.

“The reason these figures are always out is that they consider the downside rather than the upside. Nobody ever factors in the benefits of Brexit; the ability to negotiate trade deals with third countries, the ability to get rid of unnecessary EU regulations, or run a more competitive economic policy.

“Here in the North East, the figures have the worst projections in the UK – and why? Because for a region that trades more than any other with non-EU countries, the failure to consider the benefits of Brexit will mean the figures are more wrong than anywhere else in the UK.

“Now there’s all kinds of misinformation and propaganda being spread about this: continuity Remainers are trying to make it sound like these figures predict the economy contracting. In fact, they predict it growing at a slower rate.

“The 16% prediction is a worst-case scenario, spread over 15 years, and is based upon about as much proven track record as using a crystal ball to predict this week’s lottery results,” said Mr Arnott.

LETTERS

It’s not too late to adopt the right approach

Dear Editor,

While the EU continues to stamp its feet like a petulant child over Brexit it was reassuring, though not surprising, to hear that our relations with China will not change.

At least the beleaguered Mrs May was able to return from her trip there with that good news from the Chinese Prime Minister – something she generally needs more of right now – and our trading relationship with that vast country should continue to strengthen.

The EU is a declining economic bloc; by 2050 the EU’s own projections show that the whole EU27 put together will only be the world’s 4th-largest economy.  China is just one of the countries with a growing economy outside the European Union with which we can have mutually beneficial trade deals.

The British government’s negotiating position has so far been weak; a confident, forward-looking, outward-looking robust approach is needed. It’s not too late for us to adopt the right approach.

Yours sincerely,

Jonathan Arnott MEP

LETTERS

Remainers are fighting against shadows

Dear Editor,

As far as I can tell the bottom hasn’t fallen out of the world since the UK voted for Brexit – and nor will it.

But those in favour of remaining still invent opportunities to proclaim, or at least imply, that our future is a bleak one filled with doom and gloom.

The latest I spotted was a report from  Parcelhero (no, I’d never heard of them either) who suggest that Brexit could mean consumer rights giving online shoppers a 14 day ‘cooling off’ period being rescinded. But leaving the EU does not mean that this and all the other EU legislation foisted on us will be torn up by our government. Indeed, in many areas of workers’ rights and consumer rights, UK law is stronger than the EU requirements. If a British government truly wished to erode rights, this would not be the case.

Some legislation, particularly anything imposed with the EU ‘one size fits all” philosophy which does not suit our country, may rightly be amended post-Brexit to be tailored to the UK’s actual needs.

There are virtually no opponents to rights such as those in the Consumer Rights Directive. It is wrong to suggest that legislation that benefits our citizens is automatically at threat; Remainers are fighting against shadows, tilting against windmills.

Yours sincerely

Jonathan Arnott,

The North East requires more investment in transport

Dear Editor,

I quite agree with the 26 North East Labour MPs demanding more transport investment in the region.

They are quite right and it is a subject close to my heart about which I have spoken on many many occasions. There may be some dispute about the exact figures involved in the discrepancy between the North East and London but there is undoubtedly a yawning gap.

It is an issue that must be pursued but I have to say it’s a pity that the local Labour MPs did not take action when they were in power between 1997 – 2010.

Yours sincerely

Jonathan Arnott, North East Independent MEP