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{edits in italics}

I am on Copaxone for my MS and have not had a major bed-riding relapse/exacerbation/event since I was first prescribed it where, previously, I was off work and bed-ridden for up to six months at a time every six to eighteen months.

Copaxone is a daily subcutaneous self-injection of glatiramer acetate and is one of the (when I went on it in 2003) four Disease Modifying Drugs (DMDs) prescribed to people with multiple sclerosis (MS) in the UK (and elsewhere) - the other three being variations of beta interferon (which actually had less promising results in the research and have been known to cause depression/suicide).

Back in 2002 there was a huge furore in the MS community when N.I.C.E. decided that us having drugs that could slow or stop the progression of MS was not cost effective and so the NHS would not be able to prescribe them to us. I even attended a protest rally organised by Jooly's Joint outside the Houses of Parliament (iirc). Then NICE, the NHS and the pharmaceutical companies producing the medications came to an agreement which became called the 'risk sharing' deal. Long story short we were able to get Copaxone and the other DMDs on the NHS.

Leap forwards to today when my mother in law sent us an email asking if we had seen the bit in the Telegraph about the MS Society and the DMD risk sharing agreement. I was watching TV but hubby passed his iPad over to me saying, "I think you had better read this."

This is what I read. "NHS 'has wasted millions on MS drugs which did nothing to help patients' " I immediately had to stamp down panic and horror - how could the MS Society condone taking away the meds that were making so much difference to the lives of so many of us with MS?

Hubby then found the statement on the MS Society website that explains it in much better terms than the Telegraph article had. In my opinion the latter came over as sensationalist and reactionary. I am writing this blog post to hopefully help those of you that have not read the MS Society postings but may have heard about the newspaper article(s) from relatives.

"Risk Sharing Scheme failings highlighted in new papers"

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.

In December 2009 the MS Society withdrew its support for the scheme (read more) . We took this decision after repeatedly raising concerns with the Department of Health over a four year period to no avail.

Despite withdrawing our support from the scheme, we want to make sure that people with MS will not face issues accessing DMDs on the NHS. We’ve raised this with the Department of Health and have written assurances from them that DMDs will still be available even if the scheme is stopped.

"The Risk Sharing Scheme"

Will it mean I can’t get my disease-modifying drugs on the NHS?
No, we have written assurance from the Department of Health that access to DMDs will continue on the NHS.

ALL IS NOT LOST! Panic over!

Don't you just love how the news press tries to make everything a big deal and end up causing consternation and pain? No, I don't either.



( 8 comments — Leave a comment )
Jun. 5th, 2010 03:06 am (UTC)
Oh, god, it just makes me angry that the media would be so careless. :/
Jun. 5th, 2010 02:17 pm (UTC)
Maybe the journalist/editor are the only people on this planet (or in the UK/US at least) who do not know someone with MS.
Jun. 5th, 2010 02:35 pm (UTC)
{minor edits made to the original post if you are interested} ;-p
Jun. 5th, 2010 03:21 am (UTC)
One wonders if it's a habit they picked up from the useless American media.
Jun. 5th, 2010 02:18 pm (UTC)
Scarily, yes. The UK printed media and TV seem to be going the way of the USian versions. *sad*
Jun. 5th, 2010 02:35 pm (UTC)
{minor edits made to the original post if you are interested} ;-p
Jun. 6th, 2010 08:32 am (UTC)
Short answer: since we all died from swine flu last year, it doesn't matter... :-)

Rather longer (and probably more boring) answer: I've been pondering this for some time and I think it has something to do with the expansion of news media in the last few years. Up until the early 90's, news programmes were half hour bulletins a couple of times a night, radio bulletins for five-ten minutes every hour, or newspapers. In general, this limited the amount of news (and speculation dressed up as news - an increasingly common occurrence) because the TV and radio journalists had to limit their copy to fit the format. Print journalists weren't quite so limited for space, but the daily format limited the amount of time they had to spend on a story, unless it was a big one which would run over multiple days - such as a mass shooting, to take a completely random example).

Now we have 24 hour rolling news, and on demand news on the internet. Arguably there is the same amount of newsworthy events as 30 years ago, but now TV journalists have to find new stories, or new angles on existing stories, far more frequently than they used to have to do. There is also the pressure from news editors (who live their lives according to ratings returns) to keep attention focussed on your media channel and not let your viewers/readers/public slip away to another news source. This has sadly led to 'talking up' any story to get it on the media and to grab the attention of the public.

The print media, stuck with their once a day format, have to find new ways to compell people to buy their newspapers, rather than get it free from the TV or internet. They have sadly followed the trend in the TV media for dumbing down and becoming increasingly hysterical, pandering to what they believe to be their readers' prejudices. In the end, it continues to sell newspapers so it must be working to some degree.

Radio news has generally kept to its current format of short news bites and so has not followed the trend for talking up news stories as much, although they still follow the herd on the bigger horror stories such as swine flu.
Jun. 7th, 2010 09:56 am (UTC)
You make a very good point. I personally have not read/bought a daily or even weekly newspaper since the early 90s. Fist I switched to TV news and now I read the BBC news website (and LJ/RSS!) online and by email. I wonder if only the previous generations, like my mum, still buy/read newspapers on dead-trees…

Edited at 2010-06-07 09:58 am (UTC)
( 8 comments — Leave a comment )


Nat S Ford
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