Fiona Burns currently controls her condition with drugs, but she lives with the possibility that these may one day stop being effective.
she will have few other options
The Scotsman Sat 9 Dec 2006: Neil Hanna
Winners and losers in the drugs lottery
LYNDSAY MOSS HEALTH CORRESPONDENT
Fiona Burns currently controls her condition with drugs, but she lives with the possibility that these may one day stop being effective. If that happens, she will have few other options. Picture: Neil Hanna
THE rationing of expensive drugs on the NHS was brought into sharp focus yesterday when a young girl won her battle for treatment, while hundreds of other patients lost out.
Hayleigh Reynolds, eight, is to receive a £100,000-a-year treatment for her rare degenerative condition after a U-turn by her health board.
At the same time, The Scotsman has learned that more than 1,000 multiple sclerosis (MS) patients are set to be denied a powerful new treatment as it is deemed not cost-effective by medicines watchdogs.
These contrasting situations highlight the difficult decisions being made by officials with limited NHS resources and for the patients whose lives are governed by them.
The Scottish Medicines Consortium (SMC) was set up in 2001 with the aim of ending postcode prescribing and making access to drugs fairer.
But doctors must face the daily heartache of having to tell patients they cannot have a certain drug because it is not approved for funding. In some cases, this leads to people selling their homes to fund their treatment privately.
Yesterday the Reynolds family received the good news that NHS Greater Glasgow and Clyde would fund the only treatment for the rare genetic disorder Hurler Scheie syndrome.
The drug laronidase is not approved by the SMC, but the family challenged the health board and have won their case.
While they were celebrating, patients whose MS keeps coming and going - known as relapsing remitting MS - are to be denied access to the drug Tysabri when the SMC announces its decision on Monday.
Tysabri - the first new treatment for the disease in the past ten years - is seen as one of the last hopes for patients with relapsing remitting MS who fail to respond to other therapies.
Patients will now face the prospect of either funding the treatment themselves or hoping their doctor will prescribe the drug anyway. The treatment costs £14,690 a year per patient, compared with about £8,000 for other current MS treatments.
Some 10,400 people in Scotland have MS, and more than 1,000 of these could benefit from Tysabri. There are more people with MS in Scotland per head of the population than anywhere else in the world.
At least two English patients are expected to start on Tysabri, paid for by the NHS down south, and more than 20 patients in Ireland are already receiving it.
Mark Hazelwood, director of the MS Society Scotland, said: "If what we are hearing is correct and the SMC does reject Tysabri, people with severe relapsing remitting MS will be denied a vital treatment option.
"In theory, Tysabri can still be prescribed if a health trust agrees to it, but in practice we know few neurologists and GPs will override SMC advice.
"A negative decision would be bitterly disappointing."
Across the UK, patients have fought long-running battles with health authorities to get access to drugs. The breast cancer therapy Herceptin has been at the centre of the most high-profile campaign and is now widely available.
Professor Jim Cassidy, from the Beatson Oncology Centre in Glasgow, said:
"Our cancer patients know about these drugs because they have read about them, seen them on the internet. They come to us and say, 'can we have this drug' and we have to say no, because it is not approved for funding on the NHS."
He said if patients asked if a treatment was available if they paid privately, he had to tell them that it was. "Then you get people selling their houses and borrowing money to pay for treatment," he said.
Sheila McLean, professor of medical ethics at Glasgow University, said rationing of treatments had always gone on in the health service, but bodies such the SMC and its English equivalent, the National Institute for Clinical Excellence, were now helping to make the process more fair and transparent.
Family celebrate change of heart over costly drug
WINNER
THE Reynolds family described it as the best news they could have hoped for.
Eight-year-old Hayleigh suffers from Hurler-Scheie syndrome - a degenerative disorder caused by an enzyme deficiency which causes organ damage and dwarfism, writes Lyndsay Moss.
Now, thanks to a change of heart by Greater Glasgow and Clyde Health board, she will receive the costly enzyme replacement therapy laronidase.
Hayleigh's father, Robert, 43, said: "This will change Hayleigh's life.
"Any parent would fight for treatment for their child if they knew it was out there." Hayleigh's mother, Heather, 38, said their daughter may even be able to start the treatment before Christmas.
With a price tag of £100,000 a year and no approval from the Scottish Medicines Consortium, the health board had been reluctant to pay for the drug.
But following a legal challenge by the family, who live in the Barmulloch area of Glasgow, that decision was changed.
A health board spokeswoman said: "Following a detailed review, it has been recommended that laronidase should be made available in this case."
Christine Lavery, from the MPS Society, which campaigns for patients with such diseases, said she was "ecstatic" for Hayleigh's family.
But she said they should not have had to wait three years for treatment.
'What price can you put on quality of life?'
LOSER
FIONA Burns leads a full and active life, despite having been diagnosed with MS three years ago, on her 27th birthday.
She currently controls her condition with drugs, but she lives with the possibility that these may one day stop being effective. If that happens, she will have few other options.
So the decision to deny Tysabri on the NHS in Scotland causes the 30-year-old particular concern.
Ms Burns said she would be willing to pay for Tysabri herself when the time came and if the NHS would not fund it.
An account manager in Edinburgh, Ms Burns started off taking the drug Copaxone to control her condition, but this was ineffective.
She now takes beta interferon drugs, but she knows there is a chance these could one day stop working as well.
"Since I began taking them, I have got my life back and I hope that they will continue to work," she said.
"But I know that if it stops [working] there is not much else out there that will work.
"That is why the SMC's decision not to approve Tysabri is so disappointing.
"I would ask the SMC - what price can you put on quality of life? What price can you put on someone's dignity?
"Tysabri would be an amazing Christmas present for people with MS."
Related topics
* Health of the NHS
http://news.scotsman.com/topics.cfm?tid=57
* Change the Charges
http://news.scotsman.com/topics.cfm?tid=1422
This article: http://news.scotsman.com/scotland.cfm?id=1828722006
Last updated: 09-Dec-06 01:25 GMT
Comments Add your comment
- 1. scottwebb.co.uk / 3:22am 9 Dec 2006
The only TRUE winners are unfortunately the drug companies. They hold the public to Ransom through their monopolies with absolutely no intention of providing CURES to anything
Report as unsuitable- 2. Peter Cherbi, Edinburgh / 4:15am 9 Dec 2006
Why a battle ? Why was a legal challenge needed at all when a child's life could be at stake ?
I heard the Greater Glasgow & Clyde Health Board's statement on this - it sounded utter rubbish, nonsensical, just a series of excuses & lies in the face of unwanted bad publicity to save some face.
Blair & the rest of his pals get treatment whenever they want - but the rest of us have to make do with what we can get - or worse - what we are allowed to get.
This only shows the mean spiritedness of some of the Health Authorities - who are wasting money hand over fist to administrators & swathes of unecessary management and when it comes to facing the spotlight of media attention when things go wrong or they refuse treatment - they only lie lie lie to protect themselves. A Disgrace. Lie & cover up for each other while patients lives are at risk. All for money. Disgusting - while we are forking out billions for Blair & Bush's oil playground in Iraq & Afghanistan .
Get well soon Hayleigh and well done to your parents for perseverence.
Report as unsuitable- 3. Pete39, Tassy / 5:12am 9 Dec 2006
I would think that the budget, which is finite, should concentrate on curing the youngsters in Scotland. A lot of the drugs now a days do not cure, but postpone what is due to come. A bit of a bummer, but who told you that life was guaranteed?
Report as unsuitable- 4. Ozzy, Perth / 9:50am 9 Dec 2006
The most effective drug for any condition should be made available to anyone who needs it whatever the cost. The government should pass a bill to have these drugs manufactured in large quantities and cheaply. Surely we have government scientists that could replicate formulas? http://thespindoctor.info
Report as unsuitable- 5. Repton, edinburgh / 10:15am 9 Dec 2006
Unbelieveable that in this day and age we cannot get the drugs available to treat people who need them.We are by no means a poor country in comparison to others,it`s where we prioritise.Do the people of this country want wars in Iraq say against spending on the NHS?No damn right they don`t.I could`nt give a toss about Saddam but I care about our people who can`t get the proper treatment they need.Labour values,don`t give me it.Nye Bevan would turn in his grave.
Report as unsuitable- 6. GP / 10:46am 9 Dec 2006
The headline is wrong wrong wrong.
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There are NO winners only LOSERS.- 7. wattie>x 1 / 11:33am 9 Dec 2006
What a blight on our present day society in the UK?
Blair and Brown's New Labour spend Billions of £s off taxpayers hard eaned cash killing and maiming innocent people, yet so many of our own people who require the treatment to improve their lives are denied such, because of cost!
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What a despicable country we have become when we hear from these two disreputable pair that we have the fourth richest economy on Planet Earth.
We must be bonkers in allowing New Labour to treat our citizens in such a manner!- 8. radical pink, fife / 12:05pm 9 Dec 2006
Surely most of us know by now, that licensed drugs companies are a ‘danger to our health’ they are without conscience, accountability and have unrestricted political support. Their agenda is certainly not to cure illness but to procrastinate and make as much money as possible from the symptoms whilst holding life to ransom.
Tragically the psychology of hope is diminutive in the best of circumstances but for families living in poverty and suffering serious illness it is all but extinguished with the horror of the unlawful censuring of treatment. And unless there is a fully supported public challenge ‘Life by Post Code’ will be the order of the day for the poor in Scotland.
Further it strikes me that politics and science can no longer be trusted, the will to do the right thing, has long since done a bunk. Replaced by an alien agenda that is toxic to our shared environment, individual lives and even that of unborn children. Actually I’m having a hard time understanding anyone who is suffering from one of the 90% environmentally related cancers, would look to or depend on the same people responsible to make me better. I’d want to annihilate the source defeating the object and need for cure, ouch is that too simple!
Predictably licensed ‘Drugs Barons’ won’t come up with any significant cures anytime soon. Keeping the public sick and helpless is far more appealing and makes for greater profits! And even if we were to begin tackling unnecessary illness, politicians would need to demand that a ‘precautionary principal’ was adapted and that the integrity of real science was not adulterated and watered down to suit the pockets of the toxic capitalists and their power hungry puppets to control life.
Better shut up, I’m feeling dizzy, my lead and cadmium levels need replenishing, quick will someone, anyone please pass me an inorganic chocolate bar!
Report as unsuitable- 9. JimC / 12:12pm 9 Dec 2006
What a situation we have got into under this government. You read about it all the time, "Best Value", "Best Practice" my local council spout these words in everything they put out and it usually means cut price, on the cheap, sub standard work. I note even Sir Mike Jackson made comments about the "affordability & targets" within the MOD. Now in the NHS postcode lottery we have assessment for eligibility for treatment. It makes you wonder if all those poor souls in Intensive care units throughout the country are getting the best treatment or are their lives put at risk due to affordability & targets.
Report as unsuitable- 10. morris, edinburgh / 12:34pm 9 Dec 2006
7 I agree with you almost in its entirety.A minor point however,we were indeed no 4 but have been overtaken by China.We will probably be caught by India too in the forseeable future.
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Whilst recognising that the government ultimately carries responsibilty, I would suggest that since we would fare no better under the Conservatives(we know that for sure) we might look at the only solution now possible.Withdraw from the UK !
I am however compelled to ask Why are there so many people in Scotland who think that two former Fettes College middle class Edinburgh school boys have anything to do with working class aspirations? These two have never done an honest days work in their lives and were golden spoon fed from the cradle!
They are proffessional politicians in the sense that they will say/do whatver is neccessary to further their career and in the case of big Gormless Broon its at the expense of the very people who elected him! ie Fifers .
If he is elected (fat chance) his title should be Prime Monster of the Westmonster parliament, with letters after his name I. R. A. Q.
He is every bit as guilty as Tony B liar, and he knows it,The only one with any standards at all ,were the late John Smith and Robin Cook. Chisholm might yet prove to have a spine.The rest are a bunch of mercenaries and we should remove them as asap.- 11. Rosemary, England / 12:58pm 9 Dec 2006
It's easy to wax indignant, but the truth is that the UK - never mind Scotland - could spend 100% of its income on health and still not meet the demand, because the demand is infinite.
It's the way of humans never to count their blessings, but to take all they're given for granted and demand more and more. The NHS and the despised drug companies have poured billions into conquering or mitigating innumerable conditions that used to kill people. The result is that severely disabled babies survive, as do many older people with debilitating conditions that cost enormous amounts of money to treat. And life expectancy continues to rise, leading to ever greater numbers of very old people kept alive by cocktails of expensive drugs.
I'm not saying this is a bad thing - of course not. I'm just saying we're victims of our own success and the pot of money, unfortunately, has a bottom.
As for drug companies' profits, they are doing, at colossal expense, research which governments can't or won't fund any more. Once patents on their new drugs expire, a generic version will become available cheaply, spreading the benefits to all, while the companies reinvest their profits in still more research. Would you rather these companies didn't exist and medical research depended entirely on charity, or on governments striving (usually ineptly) to balance priorities?
Or what about some of you giving up your child allowance and/or other benefits so that a patient somewhere in the NHS can get treatment? It's one thing to scream 'give them more money' and quite another to scream 'give them MY money'.
Report as unsuitable- 12. weeshooie, Livingston / 1:22pm 9 Dec 2006
there does not seem to be a problem when it comes to handing out Millions to Drug users for treatment! the cases referred to as people who are ill and not of choice.
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Don/t complain too much or you will end up in the same position as my wife, who complained and is now refused treatment in our health authority. they deny it but i have the letter stating that she will be refused any treatment.
don't ask your local MSP to help either, because he just ignores the letters.- 13. Echelon_10, on my bike / 1:24pm 9 Dec 2006
Winners and losers in the drug lottery?!
I’m not even going to read the article because it will only make me angry. I can’t believe with all the problems we already have with drugs and related crime that some twisted individuals have jumped on the lottery and scratch card bandwagon to bring us drug lottery. Who is going to take responsibility for kids going into newsagents and buying and potentially winning drugs over the counter. The authorities can’t even stop unscrupulous newsagents selling cigarettes!
This time the gaming industry has gone too far!
Report as unsuitable- 14. morris, edinburgh / 1:42pm 9 Dec 2006
12 Whilst sympathising with your situation ,might I enquire how many of your MSPs you pursued this with and who they were? You do not only have one MSP of course. I would be very dissapointed if upon contacting SNP HQ in Edinburgh that this was anything less than a major enquiry and an immediate apology if not a sacking of the people responsible.
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I agree however that our system leaves much to be desired.- 15. morris, edinburgh / 1:52pm 9 Dec 2006
11 You of course are talking about the Scotland income granted under the Barnet formula from Westminster.I am talking about the money which would accrue to an independent Scotland and her 5 million population,a very different scenario altogether.
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In truth we (UK)are a nation who tax our lower earners disproportionately whilst we have the 5th largest economy in existence. The argument that the drain on resources is infinite may have some merit, but it does not excuse what the United Kingdom has done which is tax indirectly whilst lowering the direct taxation over many years now and creating a growing poverty gap.
The rich get richer, the poor get poorer.
The governments own statistics confirm this to be the case(plus the man in the street knows it only too well anyway).
Scotland has a get out clause Its called vote SNP .Whilst I wish you well south of the border I seriously think you should start kicking the New Labour Party into touch whilst you still can!
New Labour : Same old Tory!- 16. scottwebb.co.uk / 2:08pm 9 Dec 2006
Heres a great vid narrated by Dame Judy Dench on health issues http://www.welltv.com/
Report as unsuitable- 17. Paul B., USA / 2:26pm 9 Dec 2006
Denying Tysabri is poor economy. It's expensive up front, but it saves in far less adjunct medical and hospitalization costs, to say nothing of the incredible increase in quality of life many R/R MS patients experience on the drug.
To say the drug companies are the only winners/losers here is ignorant. Anyone who knows what Elan went through to bring Tysabri to market, and then back to market after it was wrongly impugned on safety considerations, knows the amount of risk and longsuffering the company and its investors had to expend to bring the drug to patients.
It's a shame that drugs have to cost so much, but it will continue to be so as long as we require such stringent requirements (most, but not all, of which are good), and as long as the approval process is fraught with human error and corruption. But even so, it's shortsighted both economically and humanitarianly to deny patients Tysabri.
Report as unsuitable- 18. nikiterry, usa- oregon / 3:47pm 9 Dec 2006
I agree with rosemary. Also, here in the usa their is a lot of talk about people not having health insurence. The fact is even when you have it (if you can afford to use it) its still highly restrictive to cost effectiveness. I think its called "experimental treatments". Pretty much if its very new, if even very hopeful, the insurence companies wont pay for it. Would be nice if there were a "profit free" labratory group, but I think that would be highly unpopular among the medicine makers.
Report as unsuitable- 19. AD, Livingston / 3:53pm 9 Dec 2006
#1 and #3 I agree with you both - money needs to be spent finding cures. It will never happen so long as there are independent drug companies because they are only interested in profit. Their attitude is why spend, say, hundreds of pouds curing somebody when we can get thousands from keeping their condition stable or managed.
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I have known people who worked for these big companies and have pretty much admitted they'll never give a cure for cancer or whatever because it would put them out of business.- 20. Mike J, USA / 4:02pm 9 Dec 2006
Thus we see the ultimate "beauty" of socialized medicine--the rationing of health care. It's the same story everytime you allow the government to control what should be a free market system.
You'd think that after watching Soviet citizens stand in bread lines for hours we would have gotten a clue. Government control, with the accompanying control of prices and availability of service, is in EVERY CASE the most inefficient, expensive way to handle anything. Why you guys continue to let yourselves get duped is beyond me.
I already foresee the accusations of hypocrisy, as this comes from an American who lives in a country where a significant percentage of the population has no health insurance. But we're not the country denying needed drugs to our sick people.
And I know what I'm talking about here. My son has cystic fibrosis, a chronic illness that requires a LOT of expensive medications. I had a job for a couple of years with no health insurance, and my son never went without medication.
The drug companies--those evil entities who are actually developing these live-saving drugs and expecting (gasp) to turn a profit from their work--in cooperation with local doctors and hospitals, have programs here where families who can't afford the expensive drugs can get their meds at a reduced rate or free. You won't see that in a socialized system. You lucky guys get rationing.
Report as unsuitable- 21. grannie, Glasgow / 4:32pm 9 Dec 2006
I remember being told years ago that, in China, you only paid your doctor if he cured you. Seems to me we're paying drug companies millions yet the sick still die. Perhaps its time we asked the drug companies for a guarantee because too many of their drugs don't live up to expectations. Of course they can always come away with the course was started too late
Report as unsuitable- 22. Persi, Pennsylvania / 4:43pm 9 Dec 2006
NICE/SMC decisions about reimbursement for new drugs and new medical procedures are held hostage to the ominous "if we fund this, then we must reduce or halt funding for something else" paradigm and to the delphic "cost/benefit" analyis used by the NHS for evaluating those drugs and procedures.
Regarding the first, its assumes (a) that offsetting savings may be achieved only through cutting patient services, rather than finding other ways to reduce expenditures (both within the NHS and ELSEWHERE - but the "elsewhere" is a matter of government policy about national priorities), and (b) that the sum of money available for patient services must remain relatively static (again, that's a matter national priorities).
About the Rubic's Cube called NHS "cost/benefit" analysis, one may as well strike "benefit" from that phrase if new expensive drugs for degenerative. progressive diseases such as MS, Parkinson's, AD, etc. will NOT have only isolated and limited use. This is despite past, gushy utterances from the NHS
that a new drug's ability to improve a patient's Quality of Life (QoL) will now be part of "cost/benefit" analysis. If you believe that, then I have a large and extemely popular bridge connecting Brooklyn and Manhattan which I can sell you ... very, very cheap.
Last, if one wants to be brutally cold about it, failure to allow reimbursement for drugs that ameliorate and slow degenerative diseases merely postpones the day when those with such diseases will become so-disabled that their cost (the cost of the patients) spirals in terms of caregiver costs, need for less effective drugs, lost days at work, inability to work, etc. In the US an advert promoting a car engine oil ended with a car mechanic saying, "Pay me now [for an oil change], or pay me [much more] later." A word to the wise.For what's it is worth, below is the title of a study presented at this year's European conference regarding MS treatments. The abstract of the study is available for review at the ECTRIMS 2006 website.
****
ECTRIMS 2006 - Friday, September 29, 2006,
“The relationship between disease severity and health-related quality of life [QoL] in patients with relapsing multiple sclerosis”R.A. Rudick, D.M. Miller, M. Hutchinson, P.W. O'Connor, E. Havrdova, L. Kappos, D.H. Miller, J.T. Phillips, C.H. Polman, W.H. Stuart, P.A. Calabresi, C. Confavreux, S.L. Galetta, E-W. Radue, F.D. Lublin, G. Giovannoni, A. Wajgt, B. Weinstock-Guttman, D.R. Wynn, F. Lynn, M.A. Panzara, A.W. Sandrock
Report as unsuitable- 23. Mike J, USA / 4:55pm 9 Dec 2006
We have to remember two things about drug companies:
1. Drug companies and their employees aren't miracle workers. These are real people trying to make real products. Sometimes they will be amazingly good, and other times they will fail. Are you any better in your life? Just last week Pfizer pulled a drug from trials because it was failing. It happens. I'm amazed that we are so willing to bad mouth the drug companies despite the amazing advancements they've made in medical care. My son would be dead without modern medications.
2. These are BUSINESSES, and their purpose is to be a successful business by making money. There's nothing evil in that; in fact, that profit motive is what pushes businesses to be successful and provide the wonderful products they provide. Even drug companies. Leave the BBC propoganda behind.
I'm amazed at how willing people are to villify businesses for making money--which is, of course, their primary purpose.
Report as unsuitable- 24. Mike J, USA / 5:02pm 9 Dec 2006
#4 shows his ignorance of the free market. If you take away the profit incentive from companies (remember how many millions it takes to bring a new drug to market; "high" drig prices allow the drug companies to recoup these costs), what will drug companies do? They'll quit making drugs. No profit, no reason to stay in business.
I'd rather have life-saving drugs at high prices rather than NO life saving drugs at all.
Report as unsuitable- 25. Jh51hrh, Saudi / 5:42pm 9 Dec 2006
Is it not time the government both north and south of the border started thinking about spending money on the living instead of using our taxes on defense spending killing people. Start with the aim of ending postcode prescribing drugs and making access to drugs for the living fairer.
Report as unsuitable- 26. Sambo, The deep south / 6:21pm 9 Dec 2006
If the NHS is buying drugs from drug companies the expense problem could lie with the NHS who dispense them and not the manufacturer. In the US pharmacists (not the drug companies) rack up enormous profits some as much as 500,000% on prescription drugs.
Report as unsuitable- 27. Prinzowhales, North Carolina / 7:08pm 9 Dec 2006
These orphan drugs will not make it on a free market, if the price charged is indicative of the cost. With drugs like Taxol in the early nineties, the government paid for the $30-plus million in R&D costs and gave it without charge to a pharmaceutical company. It cost around 40 cents to produce a milligram of it and they sold it for $8.00-plus a milligram. This BS about a "free market" in the pharmaceutical industry is pure rot.
The company has come up with a new formulation only slightly different than the old one, with no essential difference in affect, but vastly more expensive.
It is little wonder that few studies dealing with nutrition, homeopathics, herbs and alternative cures come down the road...no money in them for Big Pharma.
The combination of Big Pharma and alliopaths with a FDA, NIH and CDC that are little more than the sock puppets of Big Pharma that are trying to drive out and/or regulate out of this so-called 'free market' alternative cures and herbal and mineral supplements, while ideologues pretend that oligarchical markets with administered prices and government interventionism on behalf of the industry under the pretense of 'protecting' the consumer, while Big Pharma companies like Merck murder thousands of those 'protected' consumers with deadly nostrums like Vioxx.
This enzyme is a wonderful drug and it has brought so much good to these patients and their families. It would be well worthwhile for a government or combination of governments to take over the production of the enzyme and expanded production to meet the demand.
Notice the values at work in this sick and perverted culture--a freakin' child needs medicine and Blair, Brown, the Executive, and the rest of the bleedin' b**stards can find enough money for 'dodgy dosiers', lies and manufactured evidence to justify a war of aggression, torture, destruction and criminality... but, oh, lets ration the Golf-Delta medicine. These creatures should have the Golf Delta flesh whipped off of them!!--And any electorate that would tolerate this kind of 'rationing' should be barking in hell with their leaders!
Report as unsuitable- 28. Faye, Scotland / 7:28pm 9 Dec 2006
My gran used to say, "it will come and then it will pass." Fortunately, so far that advice has resulted in a life without any tablets, pills or magic potions.
GP's are businesses. They get paid money for every prescription written. Is it any wonder that people feel bewildered when they visit their GP and within a few minutes they are spun out with a prescription in their hand. Until that part stops, sadly many people who may not need to pop pills might get what they need - time to discuss stressful situations with their GP, thus leaving more money in the pot to pay for medication for those people who really need to pop pill for effective treatment.
#1, Scottweb is right - the only winners are the drug companies. With their patent licences, it really is a market truly stitched up and it needs to be opened up to more competition. What is their profit on return. 100, 200 or 300%? As suggested by Sambo #26 - 500,000% is outrageous and if true, the NHS is being ripped off, or should I say this is another ripoff paid for by the UK taxpayer.
Of course, if politicians were more effective with sensible policies, perhaps less people would feel the need to visit their GPs and it would save the NHS a fortune and the environment too. What affect does all these drugs have on the water system?
Report as unsuitable- 29. Reggy, Canada / 7:35pm 9 Dec 2006
The greatest shame is that the only drug that has been proven to stop M.S. is being with held from those that need it. I use it here in Canada it is cheap and very effective,a simple pill once at night that retails for about one dollar.
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I have used it now for three years with no side effects at all.
Interested? then look up Lowdosenaltrexone on the net.- 30. JimB, Belgium / 8:11pm 9 Dec 2006
This new drug is at least TWICE as effective as the existing drugs. This is not just an incremental improvement but the difference could be enough to ensure than many MS patients remain out of wheelchairs and do not require expensive care.
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I completely agree with the need to limit expensive new medicines which have marginal benefits over existing therapies. However Tysabri is not in this category. This is a MAJOR improvement over whats available at present. Twice the efficacy and none of the post-injection side effects.- 31. HappyWomanOz, Australia / 8:39pm 9 Dec 2006
Unbelievable. It's the same here. People die for want of the right meds.
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Meanwhile, the loathesome insincere Blair and others like him collaborate on spending billions to explore space looking for other populated planets like Earth... why? WHY? Is this more empire-building on a scale of such grandiosity that it makes narcissistic psychopathy look normal??
Hope they don't find any more earths. Or, that if they do, all the creatures living there are absolutely huge, like 400 feet tall, and crush the worthless Blairites underfoot without even noticing. Ooh yeahhh. Nice SF.
HW- 32. Jake / 8:44pm 9 Dec 2006
#29 I did look up naltrexone The New York psychiatrist Dr Bilhari who promotes this substance for Multiple Sclerosis has many internet articles ,mostly anecdotal, and none that I saw with any scientific merit ,peer review or official trial results reviewed by the Federal food and drug specialists who study a drugs effectiveness ,safety ,and side effects.It
Report as unsuitable- 33. Jake / 8:51pm 9 Dec 2006
continuing #32--side effects in Multiple Sclerosis He suggests it is a drug for prostate cancer and aids again without proof required by medical standards.
Report as unsuitable- 34. grannie, Glasgow / 9:34pm 9 Dec 2006
Some have mentioned the cost of research by drug companies. For as long as I can remember there have been charities collecting for Cancer Research. I therefore have assumed that scientists doing this research were funded by these charities and all knowledge was shared.
Report as unsuitable- 35. Rennie, Upstate NY / 9:49pm 9 Dec 2006
So this is what socialized/national healthcare is all about? Why don't you have Hilary Clinton come over ands show you how she'd do it in America? (No hurry sending her back). There is an alternative, build more pharmaceutical companies, and have the government make it's own drugs, to compete with private companies, no more shortages to raise prices. If there's a problem just invalidate patents or manufacturer them under license in the quanity needed. Making people suffer or die for lack of medication is more like a third world country, not what we expect to hear about the UK.
Report as unsuitable- 36. LJD, USA / 10:03pm 9 Dec 2006
It may make you feel good to complain about the drug companies, but they fill an essential role in bringing invaluable products to market, employ top scientists and many of your friends and neighbors, and pay dividends to fund your pension.
As for Tysabri, those who take the time to get the facts will realize that it is approximately twice as effective as any drug out there, based on real clinical studies with indisputable evidence, not anecdotes like some proposed therapies for MS. There is a great deal of information about Tysabri at the following two links:
The reported decision to not pay for Tysabri is very short sighted. At the very least, the government should pay the same amount for Tysabri as it pays for the next most expensive MS therapy, and then reconsider its decision in a year or so when there will be thousands of patients who can testify to the benefit of the drug, a much greater benefit than any of the older generation drugs offer without the adverse side effects. Putting this in purely monetary terms, which is the sole basis on which this decision was made, if some of these MS patients can go back to work, the savings and tax revenues will pay for many more patients being able to take Tysabri and have similar recoveries. Think of the tremendous cost to the caregivers for these MS patients who will be denied the most effective drug out there, caregivers who may be forced to stop working or work only part time to take care of an MS patient, who could be freed from those burdens if the MS patient they care for could switch to Tysabri.
When some complain about the high cost of drugs, arguing that it costs only pennies to make a pill that may sell for magnitudes more, remember that the cost of manufacturing the drug is only a small part of the cost. Reseach and development is by far the greatest cost, and when all the failed research is included (as only a percentage of research efforts produce a marketable product, and the successes must fund the failures), there must be a reasonable return on that investment -- otherwise we would be dependent on government research, and who wants to rely on that? Moreover, the cost we pay for drugs includes markups by distributors, pharmacies, clinics and other members of the medical community, and these markups can often be as much as the wholesale cost of the drug. Finally, to #26 who cites an example of a 500,000% profit margin, do you really mean that a pill that costs only 10 cents results in a profit of $50,000? Get real, and use facts to support your arguments, not nonsense.
Report as unsuitable- 37. Hugh V McLachlan, Elderslie / 11:12pm 9 Dec 2006
'Sheila McLean ...said ... bodies such the SMC and its English equivalent, the National Institute for Clinical Excellence, were now helping to make the process more fair and transparent'.
SMC and NICE try to ensure that the tax payer gets value for money for NHS treatment. However, it is not 'fair' that some people with particular illnesses are able to get effective treatment on the NHS and some other people with other particular illnesses are not able to get effecective treatment. It is not necessarily 'unfair' either. To a large extent, it is a matter of good or bad luck. The mistake is to imagine that it could or should be otherwise. The decisions about what treatment will be provided and what treatment will not be decided are and should be thought of as a political ones. They are not ethical questions or ethical problems with correct answers or solutions. They should not be based on unethical considerations and the decisions might have ethical consequences but that does not mean that they are in themselves ethical issues.
Report as unsuitable- 38. fluffcat / 12:00am 10 Dec 2006
No one should be refused drugs that can treat their condition.....ever.
Report as unsuitable
Would it be so hard for the nhs to set up their own drug production lab,,,,I think not.- 39. weeshooie, Livingston / 1:14am 10 Dec 2006
#12 I contacted the SNP and it was referred back to the MSP for my area who is not SNP. can't say who he was as I am not allowed to, however keep an eye on the Press in January/February as I intend to go public before the May election just to show how inadequate this MSP really is.
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