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.