Multiple sclerosis risk sharing scheme: a costly failure

If it's on your mind and it has to do with multiple sclerosis in any way, post it here.

Yes, DMDs again.

Postby jgkarob » Sun Jun 06, 2010 2:24 am

Greetings,
It's rather odd, to me at any rate, that this study has been viewed in so many different ways.
People have been seeing what they wanted to see, but the bmj report is much more complex than that.

I'm one of those lucky people for whom beta-interferon has worked. Of course, you only have my word for it that it works, but I believe it has.
I have been injecting Rebif44 since 2000, when I was diagnosed.
In the 18 months prior to this, I had abut 8 odd episodes, each lasting around between 4 and 8 weeks.

I started Rebif about a month after diagnosis as I was being hit hard by new symptoms without remission.

To my surprise (I didn't have great hopes) it stopped the relapses. I didn't have the flu-like side effects and four months later, I was able to enjoy my 40th birthday party.
I had three more nasty relapses in the next 5 years.

Last year, I ran out of Rebif and didn't stress too much as after all those years, I must have been SPMS. I started LDN, loved it, loved what it did for my bladder.

A year ago in April, I was hit by a very bad relapse. I spent two weeks in hospital, here in Spain and my new neurologist ordered an MRI.
This showed that I had three more lesions than my first MRI in 2000.
He thought that I was still in the RRMS phase and put me back on Rebif.

Now, this isn't like the US. In the UK for example, the patient has to choose what to take, even if their MS is aggressive.
My new neuro had to ask the funding committee at the hospital, for permission to prescribe Rebif.

So, now I take Rebif and LDN. I'm well, I can exercise and yes, I do realise that I have been incredibly lucky. I also eat a pretty strict Paleolithic diet and take Omega 3 fish oils and vitamin D3 supplements.

I would love to have CCSVI testing. But as we are incredibly poor and live off 300 euros per month, this ain't going to happen in a hurry.

So how do I feel, with the bmj report and that one-sided article in 'The Independent'?
Scared. I hate relapses. I don't want another. I don't want someone deciding that my DMD doesn't work, basing their decision on an economic model.

I logged on to this site to read a higher level of discussion. What I read was OMG STOP THESE DRUGS NOW!!!!! CLASS ACTION!!!

Please, take a step back and have a little more consideration for those people for whom the drugs actually work.
Most of you may hate 'Big Pharma'. I don't really care. What I care about is access to drugs and therapies (CCSVI for example) that may work.

It's been a very bad week for those few of us who are doing well on their DMD (CRAB) drug.
We all have or live with MS. You wouldn't think so. The impression I'm receiving is of two opposing armies, each shouting jeers at each other.
It makes me feel very sad.

Meanwhile, here's the explanation from the UKMSS.
Please bear in mind that the UK health system is about as far removed from the US health market, as Earth and Mars.

http://www.mssociety.org.uk/news_events ... _pwms.html

And yes, we feel let down by the UKMSS attitude towards CCSVI. Most people with MS desperately want to be tested.
kind regards,
K Roberts
Please excuse the silly user name. I'd like to change it if possible.
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Postby paul2008 » Sun Jun 06, 2010 10:09 am

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Last edited by paul2008 on Sun Mar 02, 2014 10:55 am, edited 1 time in total.
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Postby Loriyas » Sun Jun 06, 2010 10:55 am

The question that came to my mind when I read this is : in light of this information, what treatment does the NIH now recommend to their MS patients when they are diagnosed?
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Postby Wonderfulworld » Sun Jun 06, 2010 3:28 pm

So how do I feel, with the bmj report and that one-sided article in 'The Independent'?
Scared. I hate relapses. I don't want another. I don't want someone deciding that my DMD doesn't work, basing their decision on an economic model.

I logged on to this site to read a higher level of discussion. What I read was OMG STOP THESE DRUGS NOW!!!!! CLASS ACTION!!!

+1

Couldn't have said it better myself. Suirely DMD vs. CCSVI is not the point here? Surely it is options for MS'ers?
Before I was on DMD's I got to EDSS 9. For those who have never been there it's not a place you want to be, ever. I recovered, to a point, but continued to have 4 relapses a year. I continued having 4 relapses a year plus the addition of 8-10 viral and bacterial infections a year, courtesy of Rebif, so I'm no fan of that particular drug, for me. I switched to Copaxone, against the advice of my then neuro, who considered me in need of chemo at that point because he considered me worsending RRMS. I am now 5+ yrs on Copaxone with 1 major relapse every 2 years.

I am firmly of the opinion that CCSVI represents a major breakthrough for many MS'ers. But I also feel DMD's may work for some of us too, albeit partially. Removing choice and dividing MS'ers is not the way to progress our cause.
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby jimmylegs » Sun Jun 06, 2010 4:26 pm

mr, as far as i know you just click the profile link when you're logged in and change your username. done!
my approach: no meds so far - just nutrient-dense anti-inflammatory whole foods, and supplements where needed
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Hmm, no.

Postby jgkarob » Mon Jun 07, 2010 12:14 am

But thanks for the suggestion. I guess I'm stuck with it.
It doesn't look so bad, I guess.
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Postby AMcG » Mon Jun 07, 2010 3:11 am

In my view there are important links between this report and CCSVI but I am getting the same impression as you that there are a lot of divergent opinions here which are talking about quite different things.

But I don't think anyone is talking about stopping people who are currently using the drugs. The report that this article is about will only directly effect the UK and the current NICE advice is that people already using the drugs can carry on until they and their doctor agree to stop. I assume this means it is in your control whether you stop or not.

Setting aside the CCSVI link, my expectation is that their will now be a substantial rethink and a closer scrutiny of exactly what the real benefits are of these drugs and what is a realistic price to pay for them. This may well have the effect in the end of strengthening the justification for the drugs use where there is genuine benefit.
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Postby swynjones » Mon Jun 07, 2010 5:14 am

A copy of a letter I have sent to the editor of the Independent.

Dear Sirs

I wish to take issue with the article “MS drug trial 'a fiasco' – and NHS paid for it” that appeared in the Independent on the 4th June 2010 written by your Health Editor Jeremy Laurance (<shortened url>).

The article was ill-informed, highly misleading and irresponsible journalism.

This article refers to the recent publication from the trial of Multiple Sclerosis (MS) patients on the NHS risk-sharing scheme, where the primary outcome of the trial was disability progression over a 7 year period. The study found that there was no reduction in disease progression in patients taking the multiple sclerosis drugs compared to those patients who were not given drugs.

In the article Jeremy Laurance jumps to the conclusion that the MS drugs don’t work, that their availability on the NHS for the past few years has been a costly mistake and that we have all been conned by the drug companies. Can I suggest here that the only person who has allowed himself to be misled is your Health Editor, who through his own ignorance has not taken the time to understand the medical condition of MS nor more importantly to find out what the current MS medications make claim to do on their labels.

The major disease modifying therapies, Copaxone and the interferon treatments (Rebif, Betaserone, Avonex), make little claim on their ability to slow disease progression and reduce long-term disability. In fact any claim of disability progression is absent from the Copaxone label. Instead the primary claim of these medications is to reduce the frequency of MS relapses in the population group to which they are targeted, namely those patients who are classified as having relapsing-remitting MS, where periods of disease activity are followed by a periods of relative respite. In terms of efficacy, there is not much to choose between the drugs since they have all been proven in numerous trials over the past 15 years to reduce the frequency of relapses by about a third.

In weighing up the benefit over cost of these drugs it is important to understand the nature of relapses in MS patients in order to truly determine the impact of a reduction in relapse frequency of 30%. It is common for a single relapse to leave the MS patient incapacitated for several months with loss of vision, loss of hearing, severe neuropathic pain and extreme debilitating fatigue. Importantly, it is not uncommon for MS patients who are not on any medication to suffer a relapse 2-3 times a year. And therefore given the recovery time from each relapse can be several months the MS patient can spend their entire life in the midst of the disease. Therefore, reducing the relapse frequency in these patients is hugely significant, having both a marked improvement in patient quality of life as well as reducing the economic burden by reducing the number of days off work and in reducing healthcare support costs.

To bolster his argument Jeremy Laurance implies that the MS Society do not advocate access of these drugs to MS patients. In the article Jeremy says “The MS Society claimed success for the scheme up to 2007 but after publication of the results last December, withdrew its support”. This paragraph is followed by the line “The MS drugs dont work”. And therefore implies that the MS Society has withdrawn its support for this scheme because the drugs were ineffective. However this is highly misleading of the views of the MS Society. It is true that the MS society have withdrawn their support for the risk-sharing scheme but this is because in their view the risk-sharing scheme has been badly managed, and this decision is no reflection on the view of the society on the benefits of these drugs to MS patients. In that a little bit of research time by your Health Editor would have found the following statement to this effect on the MS Society website.

http://www.mssociety.org.uk/news_events ... _pwms.html
”The DMDs work; they reduce relapse rates and have improved quality of life for many people with MS. But the scheme has been poorly managed and its is wasting valuable time and money.”

Given that the article you published on the 4th June was so misleading and potentially so damaging for a patient group who rely on access to these medications daily I think the responsible action for your newspaper to take would be to follow up this article with a correction to state that the drugs do work by reducing relapse frequency and that although the risk-sharing scheme has been badly managed this is no reflection on the benefit these medications have provided to the thousands of MS patients in the UK over the past few years. The drugs do work, what doesnt work is Jeremy Laurance’s ability to put pen to paper in an informed and responsible way.

I have no affiliation to any of the drug companies who market and sell these drugs, nor am I a medical practitioner who prescribes these drugs. I am just simply someone who has a wife with MS who I love and care for and I am anxious that access to these drugs in the UK is maintained on the NHS.
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Good letter!

Postby jgkarob » Mon Jun 07, 2010 5:25 am

I'm the other comment poster (jgkarob).
My letter to the Indie was about the same length as yours, but from my personal experience as someone who owes their health in part, to Rebif.

Carol Naylor from the MSS did send me a message to say that the MSS had been talking at length with the Indie and that the article was updated, but the allegations are still there.

No one seems to care about the unbalanced article. MS is too rare a condition (perhaps) for the Indie to amend this.
Thanks for adding another voice.
best wishes,
K Roberts
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A historically emotional subject

Postby jgkarob » Mon Jun 07, 2010 5:40 am

Hi, you are right of course.
The problem is that for those of us who were diagnosed between 1998 and 2002, RRMS and the DMDs is an emotional subject.

The huge problem will be NICE. I can foresee huge problems ahead with getting testing and treatment past NICE. Perhaps I'm being pessimistic, but they are extremely conservative (small c).
MS is statistically, a rare disease.
NICE won't move until the full trial is completed in the US.
As I have two acquaintances who have had CCSVI angioplasty and stenting in Poland and who haven't had great results, this doesn't fill me with confidence that NICE will approve it.
This is very sad.

I have quite a lot of confidence that Campath will restore recently-diagnosed people to full health. A yearly infusion that stops MS dead in its tracks? Looks good.
Anyway, let's see what happens next.
very best wishes,
K Roberts
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Re: A historically emotional subject

Postby Daisy3 » Mon Jun 07, 2010 6:52 am

mrsenstitz wrote:Hi, you are right of course.
The problem is that for those of us who were diagnosed between 1998 and 2002, RRMS and the DMDs is an emotional subject.

The huge problem will be NICE. I can foresee huge problems ahead with getting testing and treatment past NICE. Perhaps I'm being pessimistic, but they are extremely conservative (small c).
MS is statistically, a rare disease.
NICE won't move until the full trial is completed in the US.
As I have two acquaintances who have had CCSVI angioplasty and stenting in Poland and who haven't had great results, this doesn't fill me with confidence that NICE will approve it.
This is very sad.

I have quite a lot of confidence that Campath will restore recently-diagnosed people to full health. A yearly infusion that stops MS dead in its tracks? Looks good.
Anyway, let's see what happens next.
very best wishes,
K Roberts


Where did you get that info about Campath?
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Postby jgkarob » Mon Jun 07, 2010 6:59 am

It has a different name in the US. Hang on...Alemtuzumab.

We know it as Campath.
If you are newly diagnosed it may be worth trying. It is good for very aggressive MS.
It does seem to associated with less dangerous risks than Tysabri.
I would have loved to been on the trial in 2001, but alas, I was doing well on Rebif and didn't qualify.
HTH
xxxx
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Postby jimmylegs » Mon Jun 07, 2010 3:54 pm

mr, the name change did not work? you know you can always set up a completely new profile..
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Re: Multiple sclerosis risk sharing scheme: a costly failure

Postby NHE » Mon Jun 07, 2010 10:35 pm

swynjones wrote:The major disease modifying therapies, Copaxone and the interferon treatments (Rebif, Betaserone, Avonex), make little claim on their ability to slow disease progression and reduce long-term disability.


Here in the US, at least, Avonex is marketed as slowing disabiltiy progression. It's just not terribly effective at it. Please refer to the figures in this post.

http://www.thisisms.com/ftopicp-31751.html#31751

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Re: chaning user names

Postby NHE » Mon Jun 07, 2010 10:39 pm

jimmylegs wrote:mr, the name change did not work? you know you can always set up a completely new profile..


I can forward a request to change a user name to the administrator. PM me through your current account and let me know what you wish your user name to be changed to.

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