Living With MS

Discussing all aspects of Multiple Sclerosis, various treatments, including accurate information regarding Tysabri.

Friday, March 02, 2007



My Tysabri Diary...

Hi crippy, nice to make your acquaintance! Oh yes, I know all about RK Rowling's article lashing out at the SMC's (Scottish Medicine Consortium) rejection of Tysabri - I even posted a comment on the page of new's article that broke the story, wrote to the UK MS Trust website the day before the Scottish Parliament again heard debates Thursday, 3/1...as spearheaded by Ms. Trica Marwick-excellent too-here's where you can watch it (if it's still available), and in brief, here was what I sent them:

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

http://story.100.com/?rid=7145354&cat=a1e025da3c02ca7c

Additionally, your viewers/readers might like to know that they can watch the Scottish Parliament debate live, Thursday, March 1st, at about Noon ET (9:00 am PT, and 7:00 am in Alaska and Hawaii) at http://www.holyrood.tv/popup.asp?stream=http://vr-sp-archive.lbwa.verio.net/archive/members_010307.wmv (Click on "Play Live stream" at the top of the page and/or then click "Launch in external player").

The Members of the Scottish Parliament will be debating S2M-5305, sponsored by MSP Tricia Marwick, on "Tysabri for People with MS.

"S2M-5305 Tricia Marwick: Tysabri for People with MS—That the Parliament deplores the decision by the Scottish Medicines Consortium not to recommend that Tysabri be prescribed to people with multiple sclerosis (MS); notes that, for a small number of those with the most aggressive from of relapsing-remitting MS for whom existing treatments do not work, Tysabri represents the only treatment available; notes that Tysabri is prescribed in Germany, Ireland and the United States of America but not in Scotland, which has the highest rate of MS in the world, and urges NHS boards in Scotland to allow the prescribing of Tysabri which had been described by Dr Gavin Giovannoni, of the National Hospital for Neurology and Neurosurgery in London, as the most significant advance in MS treatment for nearly a decade. Supported by: Christine Grahame, Ms Sandra White, Stewart Stevenson, Mr Kenny MacAskill, John Scott, Frances Curran, Carolyn Leckie, Richard Lochhead, Murray Tosh, Mr Stewart Maxwell, Mr Adam Ingram, Mike Pringle, Robin Harper, Brian Adam, Bruce Crawford, Fiona Hyslop, Alex Neil, Mr John Swinney, Eleanor Scott, John Swinburne, Mr Ted Brocklebank, Michael Matheson

There are two competing motions, which differ in various respects:

S2M-5306 Ms Rosemary Byrne: Quality of Life for MS sufferers—That the Parliament is concerned that the Scottish Medicines Consortium (SMC) has decided not to recommend the drug Tysabri as a treatment for multiple sclerosis, despite it being highly effective for certain patients, leading to a 60% to 70% reduction in relapses; notes that Tysabri is a licensed drug approved by the Medicines and Healthcare products Regulatory Agency (MHRA) and SMC only provides advice to NHS boards and their area drug and therapeutics committees across Scotland; notes also that health professionals are expected to take due account of this recommendation when exercising their clinical judgment but that this recommendation does not, however, override the individual responsibility of health professionals to make appropriate decisions in the circumstances of the individual patient, and calls on all NHS boards to acknowledge that clinicians must be able to prescribe this treatment where they believe there is a clinical need, regardless of SMC advice to them. Supported by: Tommy Sheridan, John Scott, Mr Adam Ingram, Carolyn Leckie, Murray Tosh, Robin Harper, Eleanor Scott, John Swinburne, Mr David Davidson, Christine Grahame, Mr Ted Brocklebank, Michael Matheson

S2M-5307 John Scott: Support for Prescribing of Tysabri for MS Sufferers in Scotland—That the Parliament notes the decision of the Scottish Medicines Consortium (SMC) that Tysabri should not be prescribed on the NHS; further notes that Scotland has the highest proportion of sufferers from multiple sclerosis in the world, that the SMC accepts that the clinical case for the use of Tysabri was sound and that the recommendation not to prescribe it on the NHS was taken on purely financial grounds, and therefore urges that this decision by the SMC be overturned and that Tysabri be made available on the NHS. Supported by: Mrs Nanette Milne, Ms Rosemary Byrne, Tommy Sheridan, Mr Adam Ingram, Dave Petrie, Murray Tosh, Rosie Kane, Robin Harper, Carolyn Leckie, Phil Gallie, Derek Brownlee, Mr Jamie McGrigor, Alex Johnstone, Alex Neil, Eleanor Scott, John Swinburne, Margaret Mitchell, Mr David Davidson, Bruce Crawford, Ms Sandra White, Christine Grahame, Bill Aitken, Lord James Douglas-Hamilton, Patrick Harvie, Fiona Hyslop, Mr Ted Brocklebank, Michael Matheson

A a very distinguished patient advocate (D.K.) and member of the website http://www.MSPatientsForChoice.org/, on Monday (2/26), emailed all of the co-sponsors of the three motions, providing them with links to our website and more information on the benefits of Tysabri. Also emailed were every other member of the Parliament, urging them to support the availability of Tysabri in Scotland. All were provided with the recent article about the Salt Lake City MS patient who was able to get out of his wheelchair and shovel snow (http://www.ksl.com/?nid=148&sid=909753), (The gentleman in the video is Darren - who posts comments occasionally on my Blog - waiving wildly to Darren :) I left a comment on that story too-lol) as well links to the Tysabri patient progress reports posted on our website http://www.mspatientsforchoice.org/progress.htm. Various benefits of Tysabri in terms of cost savings were also brought to their attention, including reduced hospitalizations and improved quality of life (possibly permitting some patients to return to work and pay taxes).

MS patients around the world (and specifically those of us in the US) are hopeful that the support and publicity from JK Rowling will help push this to victory. It would set an excellent precedent for the pending decision by NICE for coverage of Tysabri in the rest of the UK.

Thank you for all you do for MS sufferers, and thank you for your attention to this matter. Very truly yours, Lauren Roberts (MS patient for 31 yrs. & current Tysabri user) A very proud member of: http://www.MSPatientsForChoice.org/"

Crippy, might I suggest you work closely with the UK MS Trust as they are very pro-Tysabri, and see if you can get in contact with Ms. Rowling to engage her support before N.I.C.E.'s ruling in the very near future, as well as rally British MS patient support for Tysabri. If nothing else, perhaps you can help convince N.I.C.E. to at least pay for Tysabri at the same rate it pays for Avonex, Rebif, Betaseron and Copaxone, and then British MS charities or other charities/individuals can help pick up the difference. Perhaps even some English employers can help subsidize the marginal additional cost of Tysabri to keep a valued employee?

One last thing crippy, do note dearheart, that you stated "(the national institute for clinical excellence) has refused funding in scotland", which is incorrect - the SMC refused funding for Tysabri in Scotland, not N.I.C.E......which has yet to rule for England and Wales.

Good luck in your fight-I'll be cheering you on from across the pond (as many of us will too!)

A special hug for my new "ding-bat" and awesome photographer friend, Gretchen - heehee.

And oh my gosh, I almost forgot - I posted a comment Thursday night on a young MS'ers Blog (Live Journal) that was terrified to start Tysabri http://community.livejournal.com/ms_support/294930.html and I received this reply from her yesterday!...Subject: Re: Tysabri Information OMG your comment has completely uplifted my spirits about this, thank you so much.It's one thing to learn all the facts,a nd then another to learn the facts that come from MS patients, and not just the med complanies. Overall I really want to try Tysabri, it's just the fear of PML that has made me nervous. But learning this info and being able to look into it much more has really helped. I'm at a stage where, there really isn't much else I can do, and so I feel better to take the leap with some more knowledge into what I'm really doing. thank you so much!♥ nessa

Sweet! I'm so happy she's no longer terribly afraid of Tysabri :) .... Can I get an "Amen" or a "Wooooohooooo" from the choir? LOL

(((hugs)))
Love, Lauren
A very proud member of www.MSpatientsforchoice.org

2 Comments:

  • At 2:40 PM, Blogger Darren said…

    Lauren, you are something else. After reading through the scotsman article and responses you definitely are needed. Excellent thoughts and thumping of people who needed thumping. I do wish we in the MS community could help train each other as spokespeople and advocates, this learning curve is huge!

    I've had this for at least three years, but I guess not long enough.

    Please use my story shamelessly. Tysabri has not cured me by any means, but it has restored me to a productive living. I was working on LTD plans in December. In February I'm working my normal demanding job as CIO for Salt Lake County, UT.

    Tysabri has literally restored my life. Be in every moment! Relish the touch of the breeze on your face or the smell of a flower as you walk by. Every moment is a gift to consume and memorize.

    Darren

     
  • At 5:05 PM, Blogger annienmss said…

    Hi there - I wasn't sure how to email you so I thought I would leave this in a comment. Hope you don't mind!

    MS Awareness Week begins March 5, and with it the beginning of a whole new movement by and for people with MS.

    I am asking that you show your support for the MS movement by adding an html button to your blog and passing it on to others you think should also join the movement.

    You can choose your button by visiting www.nationalmssociety.org/buttons. All necessary code is provided there.

    People with MS understand something that others don’t – that moving isn’t always a guarantee. Help us to give that guarantee back and move us towards a world free of MS.

     

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