Posted on 05/17/2008 7:58:50 AM PDT by socialismisinsidious
Eye specialist Sarah Anderson works at York Hospital. Her father Ian has been refused Sutent, a new cancer drug, which could provide the only real chance of prolonging his life. Sarah, 40, lives in York with husband, Bill, a computer programmer and their twins, Douglas and Ryan, five.
As an ophthalmologist, I have spent my working life in the NHS. And for all its perceived failings, I have been proud of its fundamental role in our society - to provide equality of care for all.
Of course, I've heard the term postcode lottery but as a doctor I've only ever provided my patients with the best course of treatment available.
So when I've read about people being refused particular drugs simply because of where they lived, I've always believed there must be another reason - even if it wasn't immediately obvious at the time.
I never for a moment thought that a life could be decided by something as arbitrary as one's address.
Yet that is what has happened to my father. And it is only now, sitting on the side of the patient, that I have seen the injustice inherent in our system and the devastation it can cause.
A year ago, Dad was a happy, active 68-year-old, living in Newbury, Berkshire, with my Mum, Mary.
A former electrical engineer, in his spare time he helped build the replica Bombe - the machine used by the British to break the German Enigma codes during the Second World War.
Then, last summer, he began to feel a little off-colour. At first he was tired, then he stopped eating. By the autumn he didn't even have the energy to walk his Jack Russell dog.
In October we discovered the reason why. Dad had a large tumour on his kidneys.
It was explained that the kidney could be removed but the cancer may have spread and that chemotherapy and radiotherapy do not work for this type of cancer.
It was therefore a great relief when he was told that research had shown that a new drug, Sutent, can give a glimmer of hope and that his consultant had already used the drug to help other patients.
And he was further reassured that even though the drug had not yet been assessed by NICE (the National Institute of Clinical Excellence), his Primary Care Trust (PCT) had funded its use for seven patients in the past year.
My father then underwent major surgery to remove his kidney. It was found that there was still some cancer left and that it may have spread to his lungs.
His consultant told him they would apply for Sutent to be funded.
Imagine his surprise when he was told that West Berkshire PCT would no longer fund that treatment because of a change in policy.
His only option was to go on Interferon Alpha, an old drug his consultant does not think is as effective as Sutent. It also has significant side effects.
My father was left with two options: to die early, or spend the rest of his life on a drug that is likely to make his life not worth living.
The predicament was made even worse as my father had made a brilliant recovery from the surgery and he wanted to live as healthy a life as possible, free of the horrible side effects of Alpha Interferon, which makes you feel as if you have flu.
Would you like to spend the rest of your life with a bout of flu? It's not a tempting prospect.
As someone who works on the basis that each patient should have the care they need regardless of their ability to pay, I believed - naively - that this was simply an aberration.
I thought there would be something we could do to remedy the situation.
I contacted a kidney cancer support group and it was only then that I realised how many other people are in the same forbidding situation.
Although Sutent has been licensed in Europe since 2006, NICE has yet to decide whether it is effective enough to warrant the cost to the NHS.
It is not due to pass judgment until next January, and in the meantime each PCT is entitled to form their own policy on its use.
Tony Wilson, the former boss of Factory Records who died last August, was refused Sutent. Last September, Chris Heaton-Harris, Tory MEP for East Midlands, asked the European Commission to look into the case of Russ Jones, a former headteacher who is using his lifesavings to fund the drug.
And last month, Jean Murphy, a 62-year-old grandmother from Salford, Manchester, said that the refusal of her PCT to fund Sutent was tantamount to manslaughter.
Of the 3,100 patients a year who discover that they have advanced kidney cancer, fewer than 200 have succeeded in getting funding from their PCT.
This is despite a head-to-head clinical trial comparing Sutent with Alpha Interferon, which showed a doubling of the time it took the cancer to get worse in patients on Sutent, with more than 30 per cent of patients responding, compared with six per cent on Alpha Interferon.
So far, 35 PCTs have agreed to fund Sutent, yet almost twice as many have decided to wriggle out of paying the extra cost.
Alpha Interferon costs about £600 a month, while a trial of Sutent is just over £1,100 a month increasing to £2,200 if it is successful, as the drug company helps with the cost for the first three months.
If the drug does not work it is no longer given. Obviously, if it works the costs are greater and ongoing - a fact that seems strangely unpalatable to the NHS.
It is, in fact, illegal for a PCT to say it will never pay for a patient to have a particular treatment, but at least 65 trusts in England have decreed that the consultant has to show that the patient has "exceptional circumstances" before they will allow funding for Sutent.
Given that "exceptional" remains open to interpretation, it is impossible to predict in which cases the PCT might pay for treatment.
Certainly, when my father asked West Berkshire about this they couldn't give him any rules which decided who would be regarded as "exceptional".
Yet whose life isn't exceptional? Certainly, being told that you are "not exceptional" can have a dreadful effect. A man in Eastbourne committed suicide last year when he was refused the drug.
You might ask why we do not fund the drug ourselves? My sister, Fiona Walker, is a successful novelist and our family is lucky in that we could manage to find the monthly cost of the drug and offered to do so.
Yet the NHS told us that if we pay for the drug the NHS will not pay for any of his care. All blood tests, scans and doctors' visits will have to be paid for as well. The NHS will wash its hands of him.
Worse, if the drug works and he lives so long that we run out of money and he must become an NHS patient again, the drug will be withdrawn from him so that nature can take its course.
There is nothing to stop the PCTs changing their policy before the NICE guidance on Sutent is published next January.
They can provide this drug if they want to. That they won't is not just unfair, it is cruel.
If Dad should lose his life to cancer, it would be devastating but to lose his life to bureaucracy would be far, far worse.
Ronald Reagan once said...”the funny thing about abortion, is that everyone for it has already been born”
Same thing about “Universal Health” or “National Health Care” ...everyone for it is healthy.
I can understand the government not paying for some treatments. Once the government takes over it will be rationed as inevitably as day following night, just as it will be here under Hillary or Obama. The two parts I really despise are that they won't come clean and tell what the criteria are to get treatment and second, if you do find a way to pay for the drug the government just throws you to the wolves on all other treatments.
What is NHS?
/sarc
NHS is “The National Health Service”; the bureaucracy that runs
socialized healthcare in England.
http://en.wikipedia.org/wiki/National_Health_Service_%28England%29
Ah! The perversity of the government Catch 22! What did she expect with a government run system?
As a homeschool mom our family ran into this road block many time with our government owned and operated monopoly schools. It was all or none. If you homeschooled, the student was forbidden participation in sports, music, theater, etc.
Government healthcare = RATIONED healthcare
“Ah! The perversity of the government Catch 22!”
Perhaps the most perverse part is that her father made the machine which broke the ENIGMA code.
For that act alone, the British owe that man a debt the size of which medical care would only be a token.
Had the German code not been broken, the toll in both men and materiel would have been vastly greater than it was.
The man is 68. He wasn’t old enough to make the machine that broke the code.
Health care is ALWAYS rationed. Under government run, the government decides who gets what. Under our current system, healthcare is rationed by ability to pay/ability to find someone else to pay. There are a number of things I can do to increase my ability to pay, but I cannot move a faceless bureaucracy.
It **WILL** happen here too!
Government does this every day to homeschoolers. It is **ALL** or none! ( Thankfully, in some states this is changing.)
So....If government would do this to homeschoolers you can surely bet your health that they would do it in medicine, dentistry, optometry, and other health services as well!
( Yes, I am shouting. Americans are stupidly deaf!)
So the bad news is that you won't get the surgery or the treatment you need in time to do any good, but the good news is that it's free.
America's NHS, Hillary/Obama Kare, the solution for the fast approaching Social Security problem.
If you take all the human factors out of the equation (which government deciders tend to do), NHS's decision makes sense. The man is not going to be cured. If he can be helped, he will live on medications costing thousands and thousands of dollars.
The people who are willing to sacrifice on this man's behalf are the people who KNOW him and love him. I'd rather have the people who love me be the deciders.
.....He wasn’t old enough to make the machine that broke the code......
The sentence is cryptic and English, not American. It says he helped build the replica Bombe. After reading your excellant comment, I re-read the sentence.
His claim to fame is building a replica of the (original) Enigma decoder. I would suggest he was a sort of WW II reenactor who worked with some guys to dulpicate the efforts of the old guys in the early 40’s.
ping
Thanks for giving us the bottom line so concisely.
I agree. His chances for survival are nil. It is still questionable if the new medication with even prolong his life.
The real perversity here is that the NHS will completely abandon him as a patient if his family chooses this medication. His family has supported the NHS with its taxes. However...Here in the U.S. the government education system does this to homeschoolers every day, therefore we should expect the same with our U.S. medical system if we ever have nationalized medicine.
The solution of course is privatization of all social services and the limiting of government action to that of what is outlined in our Constitution.
article says he worked on a REPLICA of the ‘bombe’ that broke the Enigma code — not the original in the 1940s but a more recent replica
Our future, I'm afraid.
To liberal socialists, the only thing that is important is the SYMBOLISM of everyone having an INSURANCE CARD.
This allows them to FEEL GOOD.
The fact that ACTUAL HEALTH CARE is UNAVAILABLE doesn’t seem to matter to them.
Government healthcare = The VA healthcare?
The British worker pays for the NHS through a payroll tax. It is not free. Retirees and people who can't work are carried free.
Also, the total health care expenditure in the UK including the millions of Brits who have opted out of NHS for private insurance is less than half of the 16% of GDP that the US spends in total.
No. Read the sentence again. He helped build a replica of the "bombe," a very complicated electromechanical device that decoded the enigma. By way of information, the "bombe" was devised by the very brilliant Alan Touring. Later, Touring along with Thomas H. Flowers built the world's first fully electronic digital computer called the "colossus."
Didn’t the article say “replica” of the machine?
Does this mean they get to “opt out” of the taxes they pay? Probably not!
[And for all its perceived failings, I have been proud of its fundamental role in our society - to provide equality of care for all.]
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
Sarah, maybe this situation with your Father is really just another “perceived” failing of the NHS.
I guess it’s all about whose OX is being gored, eh Sarah?
I hope your Dad gets treatment, but why do you consider problems that others have had/are having with the NHS as just perceived failures?
I agree with you. But think about this. Are scientists and engineers enslaved? Most all of them work for a salary. As to a free market in medicine, medical schools have been restricting their enrollment for decades, which results in fewer doctors and higher fees. 3 out of 4 medical school graduates go on to specialize opting for the big bucks. Primary care docs, the ones we need most, are overworked, underpaid and in increasingly short supply. A lot of family docs are getting out of the profession early, tired of the endless hassles that insurance companies and HMOs give them. Hospital emergency rooms are filled with people (legal and illegal) who can't pay. If you really have an emergency, you just have to wait. The retirement of the baby boomers will place an intolerable financial burden on the generation that follows them. Like it or not, one day it will be necessary to post signs in the doctors office stating that "the following conditions will not be treated after XX years of age," lest the salaries of those who work be confiscated to pay the national retiree health care tab.
Obama care and Hillary care are pie in the sky, a gilt-edged pipe dream. But medicine has big problems and a rational plan for the future must be devised.
bump
Kidney cancer that has metesizied to the lungs - he has a couple of months, at best.
An honest oncologist would ask, which painkillers do you prefer, and how much?
The DR in the article is in complete denial.
Not that I haven’t done that - I remember asking the DR, so grandpa has only 27% heart function, how long until he gets well?
Actually, if I ever see that DR again, I will apologize. She wouldn’t look me in the face after I asked that. I now understand why.
“article says he worked on a REPLICA of the ‘bombe’ that broke the Enigma code — not the original in the 1940s but a more recent replica”
Oops!
Here's how you do it though. First of all you can fight but you won't win much for yourself, but recalling that the bureaucracy is going to be doing the same stuff to other people, your "win" can be turned into their "victory".
I and a couple of other folks once won a Veteran's Preference case against USPS. All I got out of it was a much better job with literate bosses ~ still beastly in many respects, but a cut above the last crowd.
Several years went by and "Carvin Marvin" Runyon took over as PMG and he decided the best way to "clean house" was to "clean house" and toss out folks even if they had Veteran's Preference.
This time management suffered some serious over-reach and instead of having only a handful of people to mess with and abuse they had several thousand.
Took me about 10 minutes to find out who was being hired as their lawyer, then I faxed a copy of my "win" to him ~ and they won and it cost you folks who pay postage pret'near a half billion dollars before it was all over.
Felt good.
Still didn't get much out of it but it'd been cheaper to have paid me a $1 million a few years earlier just to go away. But no, there's a type of bureaucrat who thinks he is on God's own mission to destroy the infidels or something.
How stupid of them.
And "Carvin Marvin"? Last I heard he was still in a semi-coma having suffered some seizures or something ~ dieing a long, slow, miserable death.
Most of the people who lied to him about the problems veterans present are also out of USPS ~ having retired or been fired, or just finding themselves wandering the lonely streets at night wondering where they went wrong.
It's gotta' be tough being a 1960s Liberal puke who hates the military. And I hope it hurts.
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