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NHS refuses to pay for drug to help ill mum, 31 (From York Press)
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NHS refuses to pay for drug to help ill mum, 31
10:15am Friday 11th January 2013 in News
By Richard Catton, richard.catton@thepress.co.uk
Donna Exton with her husband, John, in Haxby
A MUM from York says the NHS is playing with her life after officials said it was not “cost effective” to give her the drugs that would keep her alive.
Donna Exton, 31, from Haxby, suffers from a rare genetic disorder that has seriously damaged her kidneys and left her on the organ transplant list, but has been told the NHS will not fund regular doses of the drug eculizumab.
The drug would cost £400,000 a year but Mrs Exton’s only other option is a double liver and kidney transplant, which only one previous patient has survived.
Donna, who has a two-year-old daughter, suffers from atypical haemolytic uraemic syndrome (aHUS), which affects only 140 people in the UK and has left her so ill she has had to give up her career as a teacher in Selby.
She said the illness struck 18 months ago as she recovered from a bout of winter sickness, and it has since ravaged her body meaning she needs a kidney transplant and the expensive medication.
Despite the case being argued by her consultant, NHS North Yorkshire and York wrote to Mrs Exton last month saying the treatment “lacked sufficient evidence to demonstrate it was both clinical and cost effective.”
The family must now decide whether to appeal the decision.
Mrs Exton said: “My immune system is constantly on. My kidneys have completely failed and I'm having dialysis at home every night. I have given up my career as a teacher at Selby Community Primary. My life is half of what it was.
"I was just having lunch with my mother and then you get a letter like that and you just think they are playing with your life. I feel disappointment, anger and disbelief all rolled into one.”
She said the only other option was to undergo a risky double liver and kidney transplant, however she said it had been performed on only three other patients with aHUS and only one of them had survived.
“If I don’t get the treatment then it's just a case of keeping me comfortable,” she said.
Her husband, John, 30, said: “Without the operation it would mean she could have 10 years. If they did a kidney transplant the disease would still be there, but the drugs stop that.
“At the moment she can only do so much, but then needs to rest because she’s anaemic with it.”
The drug has been used to treat aHUS in America, since it was approved in 2011 It was also approved by the European Medicines Agency in 2007.
The drug is available in the UK but there are currently no recommendations by the National Institute for Clinical Excellence, for its use, either in cases of aHUS or paroxysmal nocturnal hemoglobinuria, another condition which it is used to treat and for which the drug has been used in Leeds.
A spokesman for NHS North Yorkshire and York confirmed there was no national NHS commissioning policy on the use of the drug.
He said: “Clinical trials have not been published and there is insufficient information to fully assess its safety.
“This treatment is not one which an individual PCT would expect to commission. It is subject to a national commissioning decision (expected sometime in 2013/14) which would apply to all eligible patients with this particular condition. We also have a responsibility to commission cost effective and affordable treatments for our population as a whole.
“From the information provided, members of the funding panel agreed that the use of this treatment lacked sufficient evidence to demonstrate it was both a clinical and cost effective use of limited NHS resources.”
Comments(22)
bob the builder
says...
12:01pm Fri 11 Jan 13
annoyed by alot
says...
12:17pm Fri 11 Jan 13
sed
Matt_S
says...
12:23pm Fri 11 Jan 13
I have no idea how much the hand transplant cost, but I suspect that there are far more people who suffer from hand injuries than this 'rare genetic disorder', so I suspect developing hand transplants is cost-effective.
Re bob the builder's point. You say "they" won't help terminally ill people die, but who are you referring to? I believe many doctors and nurses would be happy to assist them. But doctors and nurses don't make the law. And nor do NHS staff who have to decide whether a drug is cost-effective.
Minguel
says...
1:25pm Fri 11 Jan 13
Matt_S wrote:It's a very sad situation but I agree 100% with your points. For the greater good etc.
It's unfortunate, but £400k is a large amount of money that could be used to provide treatment to, say, 20 cancer patients.
I have no idea how much the hand transplant cost, but I suspect that there are far more people who suffer from hand injuries than this 'rare genetic disorder', so I suspect developing hand transplants is cost-effective.
Re bob the builder's point. You say "they" won't help terminally ill people die, but who are you referring to? I believe many doctors and nurses would be happy to assist them. But doctors and nurses don't make the law. And nor do NHS staff who have to decide whether a drug is cost-effective.
Oncebitten
says...
1:39pm Fri 11 Jan 13
You cannot equate this story to a hand transplant in any shape or form.
We still have the best medical facilities in the world and should be proud of what we do achieve.
alfie
says...
1:41pm Fri 11 Jan 13
Matt_S wrote:Bet you wouldnt say that if it was your daughter/sister/moth
It's unfortunate, but £400k is a large amount of money that could be used to provide treatment to, say, 20 cancer patients.
I have no idea how much the hand transplant cost, but I suspect that there are far more people who suffer from hand injuries than this 'rare genetic disorder', so I suspect developing hand transplants is cost-effective.
Re bob the builder's point. You say "they" won't help terminally ill people die, but who are you referring to? I believe many doctors and nurses would be happy to assist them. But doctors and nurses don't make the law. And nor do NHS staff who have to decide whether a drug is cost-effective.
er. There should not be a cap on how much any of us should get from the NHS but I agree with someones comment above about having non life saving/pain surgery on the NHS such as boob jobs and gastric bands. although some would say gastric band is lifesaving I think its the lazy option and a dangerous option.
jack white
says...
1:43pm Fri 11 Jan 13
Matt_S
says...
3:01pm Fri 11 Jan 13
alfie wrote:You're right I wouldn't. I'd try to put forward the strongest case possible for my relative to receive treatment.
Matt_S wrote:Bet you wouldnt say that if it was your daughter/sister/moth
It's unfortunate, but £400k is a large amount of money that could be used to provide treatment to, say, 20 cancer patients.
I have no idea how much the hand transplant cost, but I suspect that there are far more people who suffer from hand injuries than this 'rare genetic disorder', so I suspect developing hand transplants is cost-effective.
Re bob the builder's point. You say "they" won't help terminally ill people die, but who are you referring to? I believe many doctors and nurses would be happy to assist them. But doctors and nurses don't make the law. And nor do NHS staff who have to decide whether a drug is cost-effective.
er. There should not be a cap on how much any of us should get from the NHS but I agree with someones comment above about having non life saving/pain surgery on the NHS such as boob jobs and gastric bands. although some would say gastric band is lifesaving I think its the lazy option and a dangerous option.
But that's not the point. The NHS has to try to what's best overall, which means making tough decisions on how to allocate resources. It means some families are going to get hurt. But that's better than spending £400k saving one person, if 20 (or more) people could be helped instead. The NHS shouldn't allocate resources based on whoever shouts the most.
I don't know many details about gastric bands, but it's quite conceivable that they actually save the NHS money, as well as reducing the cost of care services and disability benefits, by preventing diseases of obesity arising in the first place.
Ageing Hippy
says...
4:10pm Fri 11 Jan 13
Good luck Donna, I hope the NHS see sense and reverse this decision.
Platform9
says...
4:59pm Fri 11 Jan 13
Ageing Hippy wrote:Totally agree - I had a conversation with a friend of mine who worked for one of these companies about the amount of money it costs to treat people. His reply was about the finance it costs to develop the medicines (and also the large profits that they make). I cannot understand why the world cannot develop these for free for the good of mankind? - probably a political arguement about making sure people do not live longer and therefore stem the population growth?. Finance and profit has a lot to answer for!
Another shameful decision made by shameless, faceless bureaucrats who are a bigger drain on NHS resources than any patient could ever be, also i would like to how in the name of Jebus can one yearly course of a drug cost £400,000? FOUR HUNDRED THOUSAND POUNDS!!!! questions need to be asked about the ethics of the companies who produce these products. Good luck Donna, I hope the NHS see sense and reverse this decision.
Omega Point
says...
5:46pm Fri 11 Jan 13
Get into the real world
Guy Fawkes
says...
6:23pm Fri 11 Jan 13
Bet you wouldnt say that if it was your daughter/sister/moth
er.
Of course he wouldn't, and equally of course you can't blame this lady for campaigning in the local paper. But Matt_S's point is precisely the reason why public health policy shouldn't be made on the basis of what you read in The Press, the Daily Wail or wherever. The brutal truth is that there will always be a finite amount of money available to spend on healthcare, and so there needs to be a way of ensuring that it's spent in a way that strikes the right balance between treating as many people as possible and dealing with diseases that are serious and expensive to treat.
That isn't always an easy call. For example, that £400k could provide one patient with eculizumab, 20 with cancer treatment or 200 with minor dental surgery. How do you make that call? Unlike cancer, toothache isn't going to kill you, but it's still very unpleasant.
There is never going to be a right answer, but it's important that the decisions are made by people who operate according to transparently stated policies and whose daughters/sisters/mo
thers ARE NOT directly affected, so that they can make those decisions rationally. It's the same principle whereby judges decide what sentences criminals gets, not the victims of their crimes. If you had the latter, then one burglar may be given a criminal discharge, and the next one hung, drawn and quartered. By the same token, if someone with toothache got to decide health spending policy, that decision would probably be very different to if the husband or wife of a cancer survivor was sitting at the same desk.
His reply was about the finance it costs to develop the medicines (and also the large profits that they make).
The profit margins of big pharma are around the same as those of other multinational big businesses. The costs of developing a new drug, however, are huge. A doctor friend of mine was recently telling me about a leukaemia treatment that had to be abandoned and £11bn written off after years of work, because clinical testing revealed a very slim possibility of Thalidomide-type side effects. The development costs of Herceptin were almost triple those of the Boeing 787.
I cannot understand why the world cannot develop these for free for the good of mankind?
Because the cost of developing high tech medical treatments is up there, literally, with that of rocket science. That money has to be found somewhere. In reality, it's not as simple as big pharma exploiting poor ill people. A lot of medical research does take place in public universities, which then sign deals with big pharma to exploit it, returning their cut of the sales revenue into more research and teaching. You need billions of pounds worth of infrastructure and an army of PhDs even to begin developing a new drug, and that has to be paid for somehow.
Digeorge
says...
7:04pm Fri 11 Jan 13
Sadly, you are not alone and you have my sympathy there. PTH comes to mind in my case.
The worst decision of my life was to have a genetic test but worst still is to have a condition and call it a carrier that the NHS won't treat. Yet that condition would have been treated had I not had the genetic condition! Called discrimination of genes.
The word 'syndrome' is the key like syndrome from hell and the stigma it comes. Doctors run a mile and can't cope or cover up all their mistakes or they use you as research laboratory rats.
And live in NHS North Yorkshire & York.
At 31, way to young to die. Good luck anyhow.
Digeorge
says...
7:07pm Fri 11 Jan 13
Buzz Light-year
says...
8:25pm Fri 11 Jan 13
also i would like to how in the name of Jebus can one yearly course of a drug cost £400,000? FOUR HUNDRED THOUSAND POUNDS!!!! questions need to be asked about the ethics of the companies who produce these products.
Exactly this!
This is not the fault of the NHS.
Ageing Hippy
says...
8:38pm Fri 11 Jan 13
Aging Hippy wrote
also i would like to how in the name of Jebus can one yearly course of a drug cost £400,000? FOUR HUNDRED THOUSAND POUNDS!!!! questions need to be asked about the ethics of the companies who produce these products.
Exactly this!
This is not the fault of the NHS.and your point is? I referred to the manufacturers and not the NHS in that instance.
Guy Fawkes
says...
8:47pm Fri 11 Jan 13
The word 'syndrome' is the key like syndrome from hell and the stigma it comes. Doctors run a mile and can't cope or cover up all their mistakes or they use you as research laboratory rats.
With respect, I think that's an overly negative characterisation. When I was in hospital with a rare form of an even rarer disease (the acute axonal motor neuropathy variant of Guillain-Barré Syndrome) in the mid-90s, I did have medical researchers poking and prodding, taking blood samples and doing research-related (i.e. not necessary for my treatment) EMG tests on me, for 2-3 years after my clinical treatment was over. But it was all voluntary, it was made clear that if I didn't want to take part that wouldn't affect the treatments I received, and I was kept informed (including being sent copies of the published results) of the progress of the study. I was actually very impressed at how ethically scrupulous the researchers working on that project were, and how open the doctors who treated me were in admitting that the disease I had was one that was not fully - and in some aspects, not even fundamentally - understood.
Digeorge
says...
9:25pm Fri 11 Jan 13
But that PTH trial also comes with a cost of the drugs involved, and it is strange how you can get it for 'hyper' but not 'hypo' and then it comes to the registration and licencing and peer review, you then have to come off the drugs concerned before it is licenced. £ssss.
anistasia
says...
9:33am Sat 12 Jan 13
Candy Cupcake
says...
9:39am Sat 12 Jan 13
Oncebitten wrote:My heart and sympathies goes out to you, and I don't know anybody who would wish to be in your shoes.
This drug is not widely, infact rarely used in this country and the NHS have no commissioning policy on it....therefore it's safety cannot be assured....this is a sad situation when the patient in question believes this may help her, however for all our safety NHS guidelines are in situ for a very good reason.
You cannot equate this story to a hand transplant in any shape or form.
We still have the best medical facilities in the world and should be proud of what we do achieve.
Sadly Oncebitten is right, this is not as yet an approved drug for use in this country, and still undergoing clinical trials. So the story doesn't really paint a true picture.
The NHS is under awful financial pressure to make massive savings, and difficult choices have to be made, and certainly in this case the choice has been made based on a pot of money available and how many patients can be treated .
No doubt once clinical trials have been concluded and the drug is readily available the cost will come down, but this is of no consolation to you at this present time.
There is no bottomless pit of money for the NHS, this is paid for by our Tax and NI... so I have no answers....
My thoughts and prayers are with you. x
Digeorge
says...
12:51pm Sat 12 Jan 13
It is again where you live and what will fund it, postcode lottery.
If it was me, I would consider moving.
Good luck as no doubt you will be having problems with the DWP as well and it is also sad that somebody else has also had to give up their career etc.
dctyke says...
10:42am Fri 11 Jan 13