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Rowling hits out at NHS ban on costly MS treatment for Scots

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Published Date:
28 February 2007
JK ROWLING yesterday condemned a decision to deny multiple sclerosis patients in Scotland access to a drug on the grounds of cost.
The Harry Potter author, whose mother suffered MS, broke her silence on the Scottish Medicines Consortium's refusal to recommend Tysabri ahead of a debate on the drug by MSPs tomorrow.

Rowling said cost should not dictate the use of a drug which
could help tackle a serious illness such as MS.

In December, the SMC said the economic case for Tysabri - which costs £15,000 a year per patient - had not been demonstrated.

The announcement prompted dismay among patients and MS campaigners.

The drug is used to treat patients who suffer an aggressive form of MS which leads to disabling relapses. The patients will have failed to respond to other treatments.

Yesterday, Rowling, patron of the MS Society Scotland, added her voice to the calls for the SMC to reconsider its position.

"I know from personal experience that MS can have a devastating effect on everyone who comes into contact with it. My mother suffered terribly with MS and it was so frustrating that there was little or nothing doctors could do to help her.

"If a drug can help tackle MS - particularly the very aggressive type of relapsing MS we are talking about - it should not be ruled out because of cost alone.

"Once again, decisions about treatment are being made by accountants rather than clinicians, and I hope MSPs will speak up on behalf of the thousands of families affected by MS across Scotland," Rowling said.

Tomorrow MSPs will debate the motion "that the parliament deplores the decision by the Scottish Medicines Consortium not to recommend that Tysabri be prescribed to people with multiple sclerosis".

Mark Hazelwood, director of the MS Society Scotland, said Tysabri was an important treatment option for MS patients.

"People affected by MS in Scotland should have the same access to treatments as their counterparts in Ireland, Germany, the US and elsewhere," he said.

"More that 10,000 people are now taking this drug worldwide, but we are barely out of the starting blocks."

Dr Belinda Weller, a neurologist at the Western General in Edinburgh, said she had been disappointed by the SMC's decision not to recommend Tysabri.

It means doctors who want to use the drug for individual patients must apply to the health board for funding approval in each case.

Dr Weller said she had won approval to use Tysabri for one of her patients in Lothian, but doctors elsewhere in Scotland had been unsuccessful.

"There are gains to be made in improving quality of life in MS patients by using this drug which can help keep them in better health," Dr Weller said. "It is important that we have the option to use it."

SNP MSP Tricia Marwick, an MS campaigner, said she had been "astonished" by the SMC's decision.

"Scotland has the highest incidence of MS in the world.

"If you have this level of illness you have the opportunity to become a centre of excellence in the treatment of MS," she said.

"But with Tysabri we are lagging behind other countries."

The Scottish Executive said the SMC was independent of ministers and, while it provided advice, doctors had to make judgments for each patient.

• SCOTLAND has the highest rate of multiple sclerosis anywhere in the world.

More than 10,000 people have the illness - about one in 500 people.

But the reasons for the higher rate in Scotland remain unknown.

MS is the result of damage to myelin - a protective sheath surrounding the nerve fibres of the central nervous system. When this is damaged, it interferes with messages between the brain and other parts of the body.

Symptoms can include fatigue, mild to severe pain, balance and sight problems and muscle stiffness.

It is thought that about 1,000 patients in Scotland with aggressive MS could benefit from Tysabri.



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1

Ginster's Pastie,

28/02/2007 00:31:30

There is nothing that prevents a doctor prescribing this medication to a patient.

It is a licensed drug, unrestricted by legislation.

If a consultant has enough desire to use it, it can be used, SMC-approval notwithstanding.

2

www.scottwebb.co.uk,

28/02/2007 00:48:57

look to alternative medicine.......many people are :)

3

Ginster's Pastie,

28/02/2007 00:52:39

Aye, and it's a load of cack for MS unfortunately.

Very little solid evidence that various herbal and alternative treatments make a difference to outcomes.

Cannabis can certainly relieve MS-related pain, but doesn't affect disability and relapses (although that's an entirely different debate!)

4

Gnasher,

28/02/2007 01:23:39

Och for heaven's sake - she should pay for the treatment if she feels so strongly. She won't miss it.

And what is this about "breaking her silence"? Hack journalist cliche, or what?

The NHS has to ration treatments and this will become more apparent as more treatments are developed, and people live longer. That is inevitable, unless someone finds a special magic moneybag that Muggles can get their hands on. Taxpayers won't cough up much more, and as the ratio between working age people and older people grows there will be fewer taxpayers. We already know that the numbers of people with dementia will increase over time.

Assuming that we continue to reject people paying a share of their own treatment - and I think we will be correct to do so - we need to move towards open and fair evidence-based rationing so that the NHS funds only the most cost-effective treatments.

And alternative medicine is so-called because it is alternative to medicine that works - no NHS money should be spent on it.

5

somerferg,

Oz 28/02/2007 01:23:44

JK I don't like your books but I do agree with you on this - disgraceful !

6

bill inch,

28/02/2007 01:32:31

get harry to magic up a pill depository. otherwise shut up you like to many others think your opinion is worth something WHY?????

7

Peter Cherbi,

Edinburgh 28/02/2007 01:34:28

I'd certainly agree with Rowling on this one ... and as for those [bent] accountants making the decisions for who gets the treatment rathe rather than doctors - they would certainly make sure themselves or their own got it if it came to that ....

Make some more noise JK ...

8

cmwarren,

28/02/2007 01:55:35

bill inch. jk rowlings mother died of severe MS. it is a cause very dear to her heart because her mother died young from this diblitating and crippling illness. when your family members start dieing of MS, meybe you will have a different view of jk rowling supporting MS charitys, and working to help improve medical options to people in soctland who suffer from it.

me thinks your jealous of her wealth and that she is putting it to good use helping to promote the MS society of scotland, and one perant familys, and various other causes that help people in need, for a better future.

9

www.scottwebb.co.uk,

28/02/2007 02:21:09
10

www.scottwebb.co.uk,

28/02/2007 02:24:59

first link does not work on last comment ....but try this http://www.brownandcrouppen.com/tysabri.html

11

Oliver F,

UK 28/02/2007 02:56:33

I couldnt agree more with ms rowling but unfortunately as science progresses and the medication gets more and more expensive, especially for patients who dont respond to standard treatment, its an issue we are going to hear more about.

I myself am very lucky. I am about to start treatment with a new class of drugs, called tnf-blockers, next week for a severe type of arthritis that is no longer responding to other treatments. It has been a battle for my consultant to get funding for the drug but I am lucky and the funding has finally been approved. I highly suspect I am going to be one of the lucky few as I suspect NICE will rule against funding this class of drugs for my condition when it makes its decision in the summer.

12

Lauren,

California - USA 28/02/2007 05:31:32

For the record, I'd like to state that I've been living with MS for 31 years. I find it absolutely deplorable that not only have the Scots denied Tysabri (and it's superior efficacy of 67-68%) to their countrymen and women with MS, but that some of the posters here have such a negative attitude towards Ms. Rowlings (who lost her dear mother to MS), and have such an ignorance of MS.

In this day and age, to think that the SMC and some posters here are so thoroughly uneducated of the disabling and devastating effects of MS on not only the patient - physically, emotionally, and financially - adding to the fact that MS affects everyone that is or once was connected with said person, is utterly appauling to me, and it should be for most of you here as well.

I won't stoop so low as to degrade some of you as you so easily degrade us (MS patients) - however, since most of the links posted were outdated - your viewers, as well as Ms. Rowlings, might wish to review current and correct information re: Tysabri by visiting the following websites:

The all volunteer non-sponsored website http://MSPatientsForChoice.org/ (which includes Tysabri Patient Progress Reports, my FDA-AC videotaped testimony of 3/7/06 at the Tysabri hearings, stunning Tysabri efficacy Data, videotapes (of How Tysabri Works, etc.) and much, much more;

My Blog (LivingWithMS/My Tysabri Diary) http://lauren-livingwithms-aolcomlglbgl2003.blogspot.com/ ;

As well as various patient ratings of Tysabri at http://www.remedyfind.com/treatments/21/1259/ .... just to name a few.

If the almighty dollar is more important to the Scots' SMC and some posters here - than easing the suffering of your fellow human beings that have MS with a medication that is proven

13

ARW,

Glasgow 28/02/2007 07:34:17

Some clarifications:
(i) this medicine was not rejected on grounds of cost - the company who makes it could not present a convincing case on what the Scottish NHS wiould get for its money. How many of the people posting on this website complainign about the SMC decision will also be writing to Biogen who make it to ask why they couldn't present a good enough case?
(ii) the memberhsip of Scottish Medicines Consortium, who made this decision, is 75% Scottish doctors and pharmacists - it is led by doctors, not by accountants
(iii) if SMC does have a remit to say no to drugs on grounds of cost then it is rubbish at it, as it said yes to Herceptin which costs twice as much per patient, and carglumic acid for £250k per year. Decisions are made on the balance of health benefits and cost.

14

Carol S,

Kent 28/02/2007 08:36:18

Now you know what it feels like to live down here and be denied by NICE the drugs that up there you get without bother. Horrible isn't it and it's not fair and it's not nice!

15

Gnasher,

28/02/2007 09:19:28

Given that public money for NHS treatments has to be rationed, what is the fairest way of doing this? Surely a model which tries to fit effectiveness with cost is the way forward? Or is there a better way?

16

PAC,

Aberdeen 28/02/2007 09:52:57

See ARW#13
It is worth saying again that the idea that accountants are making the decisions is misleading. Compared to England, Scotland's system is led much more by practising doctors. They are often specialists in their field. Doctors are used to making these rationing decisions every day.

On the likelihood of this being overturned - I wouldn't hold my breath. Think of the precedent - drug companies and groups would know that a good campagn could change things. The issue would never go off the agenda.

17

Franklin,

28/02/2007 11:06:22

A friend of mine goes through a lot of agonising pain with her MS that I can't imagine myself going through, and it pains me to see it in front of my eyes, knowing there's nothing I can physically do.

Anyone who doesn't know someone with MS, go visit a hospital or care facility and see what they go through. It will change your mind.

Ms Rowling is the Patron of the MS Charity in Scotland and has given given a lot of money to aid them. How much have you ever done #6?? She has more right than you do to speak her mind and at least it is a positive voice that can help acheive better for sufferers.

Tysabri is an effective drug and cost should not enter into it. We are human beings, we are supposed to look after our sick and old are we not? It is our communal duty. When did the £ or the $ become more important than our fellow human beings?

18

Andrew ICT,

Aberdeen 28/02/2007 11:22:34

#12 Lauren - excellent post.

19

I'm no really here,

28/02/2007 11:25:51

Well done #13 and #16: A load of ranting and raving for a non-story. You should turn your ranting and raving against Lindsay Moss for not doing her job properly and getting the facts.

20

Sir Ramjam Delilah Fookyboogieloo-Smythe,

28/02/2007 13:18:51

bill inch #6, if you'd had to watch a parent suffer and die from MS you'd engage brain before typing in an offensive diatribe.

Rowling isn't my favourite celebrity /author, but she is now a wealthy and powerful woman and when when she speaks the media listens. That's good enough in my books.

NOT ENOUGH IS DONE IN THIS COUNTRY FOR THIS DISEASE: IT DESTROYS LIVES & FAMILIES ARE TORN APART. IT ENDS CHILDHOOD FOR TOO MANY WHEN THEY HAVE TO FACE YEARS OF CARING FOR A PARENT WHO IS STRUCK DOWN BY IT.

21

S.Macleod,

Inverness 28/02/2007 13:27:43

"to deny multiple sclerosis patients in Scotland access to a drug on the grounds of cost"

is a total disgrace.

23

D. Kaplan,

Washington, DC 28/02/2007 18:14:42

Scottwebb (No. 9 and 10) --

Unfortunately, your information is woefully out of date and tremendously misleading. Perhaps you are a sales representative for one of the older generation MS drugs that will suffer losses in market share as Tysabri becomes the standard of care? You must know that US litigation attorneys jump on almost any tragedy seeking possible clients.

The difficulties that led to Tysabri being withdrawn from the market two years ago for 16 months were due to drug interactions, not anything related to Tysabri treatment alone in mainstream MS patients with relapsing forms of the disease. Lauren is most qualified to address these points, as she has done, but for you to be digging up misleading information one to two years out of date is appalling.

During March through August 2005, there was an exhaustive independent review of every patient who took Tysabri, and the only cases of PML were those that were disclosed in February and March 2005, two in MS patients on the combination of Avonex and Tysabri, and one in a Crohn's Disease patient who was on long term immunosuppressant drugs. Nevertheless, significant safeguards have been implemented to mitigate any risk of Tysabri treatment, so that any theoretical risk is well below the risk of untreated or poorly treated (i.e., with Avonex, Betaseron, Copaxone or Rebif) MS.

If one wants to look narrowly at the cost/benefit of Tysabri, particularly if compared to the older generation, less effective drugs that ARE covered, the decision should be clear. Although it is more expensive than the older generation less effective MS drugs, Tysabri is about twice as effective in preventing relapses and slowing disability progression, and contributes significantly to improved quality of life (including the ability for some patients to return to work and activities with their families) and reduced hospitalizations.

In time, Tysabri will likely become the standard of care for relap

24

,

28/02/2007 18:36:50
Comment Removed By Administrator
Reason: Scotsman Import, Original comment id: 406938, Article id was mapped to record!
25

persephone047,

U.S. 28/02/2007 21:24:34

What the hell, people? The ones who are against the medicine are just not thinking logically. Who frickin' cares about money, when people, not only people with the disease, but the friends and family around these people, are ALL affected! Why should JKR be insulted for standing up to these people, and supporting a medicine that can help MS victims? Why should her passion be extinguished?? After all, it was her own mother that suffered and died from this. Do you all even know what MS is? Why don't you go look it up and see how bad it affects people. It causes the brain to lose abilities to use body functions. So, whoever is against this medicine, I wholeheartedly disagree with you!

26

David Ban,

Sympathy from Spain 28/02/2007 22:16:12

The misdirection of funds in the NHS results in a lack of money going to front line treatment including the purchase of vital drugs to treat MS.

The NHS has to be decentralised, the bureaucracy abolished and the ethos changed to put the patient first. Millions of pounds will be saved and available for patient care though a lot of people will have to be retrained and /or find new jobs.

27

amy marie elizabeth,

orem, ut 28/02/2007 22:25:15

I'm a senior at BYU in Utah, US and I'm graduating in molecular biology. I've written two papers on Tysabri, one when it was first taken off the market, and again when it was reinstated. I completely disagree with it being taken away because of expense for those who are suffering from MS. My cousin has MS and her husband won't let her get treatment. I see how this disease truly affects those who don't have treatment opportunities. I hope that those who are able can get the very best treatment options for them, and that no one would stand in their way over the triviality of money. yes trivial. compared to life, money couldn't mean less.

28

Dora,

California USA 01/03/2007 00:11:55

I have been living with MS for a little over a year which is nothing compared to other postings on here. But I can say that the pain is unbelievable every day. I am teriffied to even think what my life and family would be living through with out my daily injectible. I already wander sideways and look drunk, I dont drive either. I feel for the Scotts. I myself am part Scotts and emensly proud to say so. I see JK in a whole different light. Thank You.

29

Karen S,

California 01/03/2007 00:20:23

I have MS and am on an injectable medicine that costs over $2000 per month. Fortunately this regimen keeps me healthy and able to work. Because I work, I have health insurance which pays for most of the drug. I cannot imagine being gravely disabled, reaching for a lifeline and being rejected due to cost. And people in the US want National Health Care. What a sad sad thing all around.

30

erinme,

America 01/03/2007 20:27:50

Though I am not directly affected by the outcome of this, the medicine should be made available to those who need it. Forget about the cost. If it works, it needs to be used. My dad died of MS. His medicines didn't even help him, in the end. If Tysabri had been available to him, he might have lasted longer. Marijuana did help his tremors, but it was only for a short period of time. There are many natural treatments, and man-made treatments, but nothing helped. My vote, though I don't really have a say, is let the people with MS have the medicine. So what if it costs tax payers more money? People, with this medicine, would have a better chance at a fuller life.


 

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