This is MY journey with MS! I give you my thoughts, feelings, hopes, and prayers. My wish that one day this disease will come to an end. That one day there will be a cure. For now, I hold on to possibility. I HOPE this will help and inspire not only myself but others.
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Are The ABCR's Really Worth Taking?

"Leading scientists have raised serious concerns about a major government (UK) study into the effectiveness of drugs used by thousands of people with MS."

"The study was originally being conducted by an established team at Sheffield University. But it has been switched to Parexel - a company with commercial links to three of the four pharmaceutical companies involved in the study.........

.......There are also concerns about how much of the research will be made public. It is feared patients currently taking expensive drugs like beta interferon may be kept in the dark even after the ten year study is complete.

The National Institute for Health and Clinical Excellence decided in 2001 not to sanction beta interferon - or another MS drug, glatiramer acetate - for use on the NHS, ruling they did not represent value for money.

However, after a sustained campaign by the pharmaceutical companies, charities and patients, the government rejected the advice of its own advisory body."

Click here for the full story

Of course we all know about the site reactions, possible liver damage, and risk of depression...but this makes you think. Is this switch about money, did they find something that could potentially be dangerous to us (if using these meds over a long period of time)? Just as everything else with this illness....more unknown. I really hope for the sake of all MS'ers that this is just a simple matter of "business" and there is not some risk factor that we may one day find out about (after using the medication for years). There have been many studies showing these medications do, why is this one different? Just something to think about.

Problem is....until there is a better treatment available what are the options? Do we just sit back, take nothing, and risk becoming disabled even sooner, while we wait on someone else to find the answers for us? We need to do something people! This is why it is so important to get involved and raise awareness and money for MS research. My friend, Dave (in the UK....over at MS not just a diary) participated in a charity event this weekend where he raised a lot of money for MS research...he jumped out of a plane and although I don't know exactly how much he raised I know it was well over $1000, maybe even over $2000. Dave, You Rock!

Of course not everyone needs to go and jump out of a plane, but there are things each one of us can do within our own communities. If you aren't sure what you can your local NMSS (in Canada - MS Society of Canada; in the UK - MS Society). They could always use more people to raise awareness and donate money.


mouse said...

Jaime, Good thoughts for sure. I do seriously doubt that it is really about money. If the pharmaceuticals thought that there was a danger that they might be sued they would quickly pull the product out of the market. When it comes to CRAB's the 30% efficacy rate means that it works for some and it does not work for most. That is probably the nature of the doubt over the cost/benefit scenario. But hope is something that the bean counters can't put a value on because it is priceless.

Jaime said...

I guess I should have been a bit more specific when questioning the money motive...of course I am aware that if there were something they did not disclose they could get sued, but my thought was that maybe they are prefering to take control over it and have their own people do it (rather than the best scientists in the UK) because they can then control the cost! Budget cuts have been a continuing problem in this counrty...possiblity a problem in the UK as well (not to mention many of these companies are US based).

These drugs are already on the market and being used. This study was to figure out how patients do after being on it for 10 years. I can't help but wonder (since the situation with Tysabri) if they were to find something, but only in a couple people, if they would want to continue doing research to figure out the actual risk rather than pulling the drug from everyone. Not sure how/if that would happen, but it is just a thought. There is research that shows the ABCR's work (of course not for we all respond different) but as far as I know that research has been limited to a shorter period of use.

Who really knows what is going on, I am sure we will find out soon enough. For now, we just have to continue to have HOPE and follow the course outlined by our neurologsits! The fact is all medications have some side effect...not just the MS drugs! Such is life!

personallog! said...

Thanks for the mention! What is that pop up effect on here? It causes head aches(with me anyway!) Please take it off! I am rather glad that there are some sort of investagation in to the ms drugs. There long term effectiveness, no matter who does them. As long as they are not biased towards the companies that created them and they keep on giving us these new drugs to help us!
Hope you are well!

Jaime said...

I agree it is important that there are studies done from time to time to see how effective the drugs are. My hope is that the research will show what is has shown in the past....that these drugs do work (even over a long period of time) and that the side effects are minimal (possible increase in liver function, depression, etc.) Let's keep our fingers crossed!

In the meantime this is what we have to work let's hope this IS working! :) I know they are always working for something better (and even a cure) so until then this just must work.

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I was diagnosed with MS in 2004, have been through all of the FDA approved treatments I qualify for and now am participating in the HALT MS Study. This is my life with MS (among other things).

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