Why People With Chronic Illnesses Are Terrified By Talk Of The NHS Being 'On The Table'

Post-Brexit, the cost of medicines they rely on could skyrocket.

The ongoing row around the NHS being “on the table” in a post-Brexit trade deal with the US is hotting up, as Donald Trump visits the UK to attend a Nato summit in London.

Boris Johnson has a delicate dilemma – how to court the US president without absorbing any of his toxicity ahead of next week’s general election.

Jeremy Corbyn has no such qualms and welcomed Trump to Britain with a letter demanding he will not try to push medicine prices up once the UK leaves the EU.

But away from the political wrangling in Westminster, what about those who could be directly affected by a rise in drug prices?

Chronic illnesses – long-term conditions for which there is no cure – affect a staggering 15m people in the UK: nearly one-in-five Brits.

The term covers a wide variety of disorders including diabetes, arthritis and cystic fibrosis, but they all have one thing in common: only drugs and medical treatments make daily life manageable for the people who suffer from them.

This inevitably means relying on the NHS to source, approve and fund them.

Which is why talk of the health service being “on the table” in post-Brexit UK-US trade talks has people spooked.

When Britain leaves the EU it will have to negotiate a trade deal with the US, which has already stated it will seek “full market access for US products”.

Currently, the National Institute for Health and Care Excellence (NICE) determines the price of drugs by looking at how much they improve quality of life.

It then puts a value on that, and tells US drugs companies that is how much the NHS will pay for them.

People take part in a march in London in support of the National Health Service to demand an end to the "crisis" in the NHS.
People take part in a march in London in support of the National Health Service to demand an end to the "crisis" in the NHS.
PA Archive/PA Images

But this could change. Dr Andrew Hill, a senior visiting research fellow in the pharmacology department at Liverpool University, told HuffPost UK: “The Americans are saying they want rid of that and they just want a drug that is approved with a certain price, which is much harder to contest.

The bottom line is “full market access for US products” would mean higher drug prices for the NHS. How much higher? A lot.

“US drug prices are two and a half times higher and that’s a very conservative estimate – they could go even higher,” says Dr Hill.

The NHS budget is fixed so if drug costs go up then either other parts of the health service will be deprived of money or the drugs will simply no longer be available.

HuffPost UK asked four people with a chronic illness how this could affect their lives...

Sophie Louise Clutterbuck, medical editor from Cheshire

“I have Crohn’s Disease which was diagnosed in 2016. In March 2018 I was finally able to start a biologic drug called Infliximab which has completely changed my life.

“I got my dream job after starting it because I was actually able to commute in the morning rather than being unable to leave the house – I’d been working in customer service 5 minutes from my home until this point.

Sophie Louise Clutterbuck.
Sophie Louise Clutterbuck.
Sophie Louise Clutterbuck

“I take several medications including two immunosuppressants but the effects are nothing compared to the illness itself. I’m terrified that we will be forced to adopt an insurance-based health model similar to the US in which case I simply will not be able to afford the Infliximab.

“I’m very privileged compared to most people with a chronic illness. I work full time – but even then I wouldn’t be able to afford the thousands of pounds a year that it costs.

“The impact on my personal health would personally be choosing which medications I can afford, and not the ones which actually allow me to function well. I would struggle to get to work every day – sometimes I struggle anyway even though I’m unrecognisable now compared to before Infliximab.

“Ultimately my biggest fear is that not only would I not be well enough to continue with my job, which I love, but that I might not be well enough to work full time or otherwise at all, because even in employment my wage wouldn’t cover the costs of medications.”

Tom Edge, screenwriter and father to six-year-old Griffin, who has Cystic Fibrosis. Tom and Griffin live in London.

“Our son Griffin was born with cystic fibrosis (CF). He was diagnosed at five weeks old following the standard ‘heel prick test’ done on all newborns in the UK.

“One such therapy [to treat the type of CF Griffin suffers from] is Orkambi, a tablet-form treatment that belongs to a class of interventions known as ‘protein modulators’. This approach to disease treatment has been revolutionary – instead of treating the symptoms of CF, the root cause, a malfunctioning protein, is directly targeted.

“The results have been stellar, and fully 90% of people with CF benefit from taking it.

Griffin Edge with his mother, Hannah Begbie.
Griffin Edge with his mother, Hannah Begbie.
Tom Edge

“However, there is no guarantee that people in the UK will get their hands on Trikafta any time soon. It was an agonising four-year battle even to gain access to Orkambi as the manufacturer, Vertex, bedded down in a bitter battle with NHS England and NICE over pricing.

“A UK-US trade tie-up is likely to robustly protect American pharma interests, weakening politicians’ ability to force through reasonable pricing deals. There are only 10,000 CF patients in the UK. The fear is their interests would quickly be swept aside in favour of desperately protecting post-Brexit trade deals, leaving children sickening and adults dying for want of access to high-price meds.

“Patients with CF in the UK do want to see reform in drug access negotiations. Many lives were lost during the four-year wait for Orkambi. But the indications seem to be that any reforms will be in the interests of major companies’ patents, not British patients.”

Suzi, photographer and writer from Warwickshire

“I have several chronic conditions, mostly affecting the digestive system. The main conditions are bile acid malabsorption (BAM), Rapid Gastric Emptying and Hypoglycaemia. On a day-to-day basis, this means I can experience diarrhoea, pain – often crippling – bloating, nausea and exhaustion, and struggle to work.

“For all of my conditions, only two medications exist which are for bile acid malabsorption. They don’t really solve the problem, but can help diarrhoea for some people.

“I am personally concerned about the effect on medication cost and availability. The medicines for BMA have been experiencing shortages for almost a year now, mostly due to Brexit.

“Many GPs also refuse to prescribe them due to their high cost, which I fear could be made much worse with a trade deal. Whilst I can’t use the medications, I know many people who suffer much worse than I do, and heavily rely on these medications in order to leave the house.

“There is a medication in the US that has proven effective in trials to help BMA, but it is so expensive that even the NHS can’t afford to buy it with their negotiating power. Going forward, I’m very concerned that more medications will be made out of reach due to our weak bargaining position with the US.”

Mike Williams, 35-year-old content producer living in London

“I’ve got ulcerative colitis, diagnosed when I was 21 and just finishing uni. To keep it under control, I take nine pills a day – a mix of Asacol and azathiaprine – need regular blood tests, and annual hospital check-ups with full investigations like a colonoscopy every four to five years.

“So, it’s quite full-on but over the years has become fairly manageable and less daunting.

Mike Williams.
Mike Williams.
Mike Williams

“The thing that scares is having seen the devastating impact the US health system has on its own people. Just the other day I read about a woman who prematurely gave birth and wound up with bills of nearly $900,000 [£698,000] when she discovered her baby wasn’t covered.

“The NHS has been a literal lifesaver for me, so it’s only natural I’d want to protect it. But the fact it doesn’t eat all all of my money, like it does to many Americans, is what I’m grateful for.

“If I couldn’t afford my meds I dread to think what I’d do and find it so unjust that people elsewhere are forced to use all their wages, savings, and disposable income just to buy pills to stay alive and healthy. I’d worry if a deal was struck with the US, Trump and Johnson would have no qualms dismantling it, raising prices and even trying to privatise it – which would be an unmitigated disaster and travesty.”


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