Family of Donna Exton in plea to Government on drug funding decision

York Press: Donna Exton, 31, with her husband, John, 30 Donna Exton, 31, with her husband, John, 30

THE family of a seriously ill York mum who has been refused a drug which could save her life has called on the Government to speed up a decision on whether to pay for the treatment.

John Exton, husband of 31-year-old Donna Exton, wants National Health Service commissioners to fast-track their decision on routinely funding the drug eculizumab, for people with the rare condition atypical haemolytic uraemic syndrome (aHUS). It affects about 140 people in the UK, including Mrs Exton, whose case was reported in The Press last week.

The couple are expecting a decision from the Advisory Group for National Specialised Services (AGNSS) after it was presented with evidence early last year from clinical trials conducted by Alexion, the makers of eculizumab, who say the drug is proven for the treatment of aHUS. The medicine, however, costs £400,000 a year.

Mr Exton, 30, said: “I would call on those responsible to make a decision as soon as possible. This drug could save my wife’s life.”

In December, NHS North Yorkshire and York refused to fund the use of eculizumab, which Mrs Exton would need to take for life in the event of the kidney transplant which she also urgently requires.

Mr Exton’s calls have been backed by bosses at Alexion.

Irving Adler, head of corporate communications, said he had “no idea” why the process was taking so long.

He said: “If I was looking at this from the outside, I would be asking why the minister hasn’t made a decision. We are absolutely convinced the drug will be of benefit.”

Mark Barrett, country manager for the UK and Ireland, pointed out the drug is approved in mainland Europe and the United States, for the treatment of aHUS.

He said: “I don’t think there can be any question on the clinical efficacy of the drug.”

It is understood if the NHS agree to fund the drug nationally, a treatment centre would be set up in Newcastle for aHUS sufferers.

A spokesperson for AGNSS said: “The application for the national commissioning of the drug Eculizumab has been carefully considered by the Advisory Group for National Specialised Services (AGNSS) using the agreed criteria.

“These include consideration of the short and long-term clinical benefits, comparisons with alternative treatments, affordability and referral pathways. AGNSS’ advice is currently being considered by Ministers who will then make a final decision.”

Comments (3)

Please log in to enable comment sorting

10:14am Sun 20 Jan 13

ReginaldBiscuit says...

I've been following this story with some alarm. Firstly, I hope this young woman is given this drug. Preserve human life at all cost regardless of cost should be rule number one. If there are any modernising creationists out there, this may be a suitable add-on as the 11th commandment.

There is something very nasty going on with the health service at the moment which has been made to suffer through years of political interference and meddling. The rot started with privatisation which is yet another of the Thatcher era egregious disasters. How one woman and regime could alter forever alter and contort a nation is astounding in the very least. That's a topic for another day though. The irony is that the alleged the disastrous social engineering policies that the incumbent regime accuses the last government of, were started and perpetuated by the tories in the 80s. Anyway, haven't got all day.

In the very recent past we have seen NHS trusts struggling to deal with their finances with one trust being split up because it is in such a mess. That trust is not unique, there are a number of others in the same position, they could go 'bust', be split up.

The treatment argument is ethically wrong because it is based on finance. This woman should be treated regardless of finance.

If you want to stir things up and as questions, how is it that people in Scotland receive better standards of healthcare and education at cost to the British Taxpayer? If Donna lived in Scotland, there's a much higher probability of her receiving this drug. Let us stir things up even more. There have been a number of high-profile cases over the years where an international incident occurs, someone is shot and is immediately flown to Britain for life-saving treatment. The most recent example was the unfortunate girl who was shot in the head by the Taleban for simply expressing her views. She was flown to Britain and thankfully recovered after treatment. Okay, you cannot equate the condition Donna has to what happened to the poor girl. It is an example though of out political masters trying to make Britain look like a major can-do player in the world which, we are not. Haven't been for a while. The ratings agencies will confirm this shortly.

All I can say is that I hope Donna receives the treatment that she is very much entitled to.

All the best,

Reg

BTW - The sooner the NHS, railways, gas, electric and water are re-nationalised, the better. People may actually be able to afford to live without constantly worrying about debt and what they can afford. Whilst they're at it, the government can dissolve the parliaments in Scotland and Wales - horrendous wastes of your money (the Holyrood building where the Scottish parliament currently sits cost a staggering half-a-billion, a mind-boggling amount). This is the United Kingdom, parliaments are not required in Scotland or Wales. I would love to see the world banks forcibly shut these places down although that's a while off yet. Oh well.
I've been following this story with some alarm. Firstly, I hope this young woman is given this drug. Preserve human life at all cost regardless of cost should be rule number one. If there are any modernising creationists out there, this may be a suitable add-on as the 11th commandment. There is something very nasty going on with the health service at the moment which has been made to suffer through years of political interference and meddling. The rot started with privatisation which is yet another of the Thatcher era egregious disasters. How one woman and regime could alter forever alter and contort a nation is astounding in the very least. That's a topic for another day though. The irony is that the alleged the disastrous social engineering policies that the incumbent regime accuses the last government of, were started and perpetuated by the tories in the 80s. Anyway, haven't got all day. In the very recent past we have seen NHS trusts struggling to deal with their finances with one trust being split up because it is in such a mess. That trust is not unique, there are a number of others in the same position, they could go 'bust', be split up. The treatment argument is ethically wrong because it is based on finance. This woman should be treated regardless of finance. If you want to stir things up and as questions, how is it that people in Scotland receive better standards of healthcare and education at cost to the British Taxpayer? If Donna lived in Scotland, there's a much higher probability of her receiving this drug. Let us stir things up even more. There have been a number of high-profile cases over the years where an international incident occurs, someone is shot and is immediately flown to Britain for life-saving treatment. The most recent example was the unfortunate girl who was shot in the head by the Taleban for simply expressing her views. She was flown to Britain and thankfully recovered after treatment. Okay, you cannot equate the condition Donna has to what happened to the poor girl. It is an example though of out political masters trying to make Britain look like a major can-do player in the world which, we are not. Haven't been for a while. The ratings agencies will confirm this shortly. All I can say is that I hope Donna receives the treatment that she is very much entitled to. All the best, Reg BTW - The sooner the NHS, railways, gas, electric and water are re-nationalised, the better. People may actually be able to afford to live without constantly worrying about debt and what they can afford. Whilst they're at it, the government can dissolve the parliaments in Scotland and Wales - horrendous wastes of your money (the Holyrood building where the Scottish parliament currently sits cost a staggering half-a-billion, a mind-boggling amount). This is the United Kingdom, parliaments are not required in Scotland or Wales. I would love to see the world banks forcibly shut these places down although that's a while off yet. Oh well. ReginaldBiscuit
  • Score: 0

1:51pm Sun 20 Jan 13

Digeorge says...

This site might help scroll down to North Yorkshire & York

http://www.medlaw.eu
/pct_policies.asp

Look at case studies.

Good luck if you decide to Appeal the decision about funding.
This site might help scroll down to North Yorkshire & York http://www.medlaw.eu /pct_policies.asp Look at case studies. Good luck if you decide to Appeal the decision about funding. Digeorge
  • Score: 0

1:36pm Mon 21 Jan 13

Big Bad Wolf says...

ReginaldBiscuit wrote:
I've been following this story with some alarm. Firstly, I hope this young woman is given this drug. Preserve human life at all cost regardless of cost should be rule number one. If there are any modernising creationists out there, this may be a suitable add-on as the 11th commandment.

There is something very nasty going on with the health service at the moment which has been made to suffer through years of political interference and meddling. The rot started with privatisation which is yet another of the Thatcher era egregious disasters. How one woman and regime could alter forever alter and contort a nation is astounding in the very least. That's a topic for another day though. The irony is that the alleged the disastrous social engineering policies that the incumbent regime accuses the last government of, were started and perpetuated by the tories in the 80s. Anyway, haven't got all day.

In the very recent past we have seen NHS trusts struggling to deal with their finances with one trust being split up because it is in such a mess. That trust is not unique, there are a number of others in the same position, they could go 'bust', be split up.

The treatment argument is ethically wrong because it is based on finance. This woman should be treated regardless of finance.

If you want to stir things up and as questions, how is it that people in Scotland receive better standards of healthcare and education at cost to the British Taxpayer? If Donna lived in Scotland, there's a much higher probability of her receiving this drug. Let us stir things up even more. There have been a number of high-profile cases over the years where an international incident occurs, someone is shot and is immediately flown to Britain for life-saving treatment. The most recent example was the unfortunate girl who was shot in the head by the Taleban for simply expressing her views. She was flown to Britain and thankfully recovered after treatment. Okay, you cannot equate the condition Donna has to what happened to the poor girl. It is an example though of out political masters trying to make Britain look like a major can-do player in the world which, we are not. Haven't been for a while. The ratings agencies will confirm this shortly.

All I can say is that I hope Donna receives the treatment that she is very much entitled to.

All the best,

Reg

BTW - The sooner the NHS, railways, gas, electric and water are re-nationalised, the better. People may actually be able to afford to live without constantly worrying about debt and what they can afford. Whilst they're at it, the government can dissolve the parliaments in Scotland and Wales - horrendous wastes of your money (the Holyrood building where the Scottish parliament currently sits cost a staggering half-a-billion, a mind-boggling amount). This is the United Kingdom, parliaments are not required in Scotland or Wales. I would love to see the world banks forcibly shut these places down although that's a while off yet. Oh well.
Is there ANYTHING that Thatcher wasn't responsible for in your book??
[quote][p][bold]ReginaldBiscuit[/bold] wrote: I've been following this story with some alarm. Firstly, I hope this young woman is given this drug. Preserve human life at all cost regardless of cost should be rule number one. If there are any modernising creationists out there, this may be a suitable add-on as the 11th commandment. There is something very nasty going on with the health service at the moment which has been made to suffer through years of political interference and meddling. The rot started with privatisation which is yet another of the Thatcher era egregious disasters. How one woman and regime could alter forever alter and contort a nation is astounding in the very least. That's a topic for another day though. The irony is that the alleged the disastrous social engineering policies that the incumbent regime accuses the last government of, were started and perpetuated by the tories in the 80s. Anyway, haven't got all day. In the very recent past we have seen NHS trusts struggling to deal with their finances with one trust being split up because it is in such a mess. That trust is not unique, there are a number of others in the same position, they could go 'bust', be split up. The treatment argument is ethically wrong because it is based on finance. This woman should be treated regardless of finance. If you want to stir things up and as questions, how is it that people in Scotland receive better standards of healthcare and education at cost to the British Taxpayer? If Donna lived in Scotland, there's a much higher probability of her receiving this drug. Let us stir things up even more. There have been a number of high-profile cases over the years where an international incident occurs, someone is shot and is immediately flown to Britain for life-saving treatment. The most recent example was the unfortunate girl who was shot in the head by the Taleban for simply expressing her views. She was flown to Britain and thankfully recovered after treatment. Okay, you cannot equate the condition Donna has to what happened to the poor girl. It is an example though of out political masters trying to make Britain look like a major can-do player in the world which, we are not. Haven't been for a while. The ratings agencies will confirm this shortly. All I can say is that I hope Donna receives the treatment that she is very much entitled to. All the best, Reg BTW - The sooner the NHS, railways, gas, electric and water are re-nationalised, the better. People may actually be able to afford to live without constantly worrying about debt and what they can afford. Whilst they're at it, the government can dissolve the parliaments in Scotland and Wales - horrendous wastes of your money (the Holyrood building where the Scottish parliament currently sits cost a staggering half-a-billion, a mind-boggling amount). This is the United Kingdom, parliaments are not required in Scotland or Wales. I would love to see the world banks forcibly shut these places down although that's a while off yet. Oh well.[/p][/quote]Is there ANYTHING that Thatcher wasn't responsible for in your book?? Big Bad Wolf
  • Score: 0

Comments are closed on this article.

click2find

About cookies

We want you to enjoy your visit to our website. That's why we use cookies to enhance your experience. By staying on our website you agree to our use of cookies. Find out more about the cookies we use.

I agree