Discussion in 'Rituximab: News and Research' started by Hopeful_In_San_Francisco, Jan 18, 2017.
If YES - how did you do it?
Or if NO - and you think your info would be helpful, please share.
Not many people have had the chance to try Rituximab. Here in Canada it's very complicated, if not impossible, to get it for ME. Soon, I hope !
Dr. Fluge who is studying the use of Rituximab for me/cfs has been clear in stating that Rituximab NOT be used outside of clinical trials/studies at this point. The drug comes with significant risks and possible side effects. It also must be administered in a hospital setting due to the risks.
"Dr. Fluge stresses that he does not support the use of rituximab outside of clinical trials"
And others agree as well....
"Patients have stated that Rituximab is being offered to ME/CFS patients in the United States (Andreas Kogelnik at the Open Medicine Institute) and in Norway (a private clinic in Sandnes) but Jonathan Edwards has advised against this, stating in 2015 "As the person who established that rituximab is useful in autoimmune disease I would actually advise against this. Rituximab is very unlike most drugs in that you have to understand how to use it in considerable detail in order to give it safely and effectively". The British patient charity the ME Association has also advised against patients looking for treatment with the drug outside of clinical trials.
I know that you are in the USA but here in the UK (for reasons already stated in the replies so far) this is not a drug that is going to be prescribed for ME/CFS on the NHS outside a clinical trial in our present state of knowledge regarding safety and efficacy in the treatment of ME/CFS
And there isn't really any possibility of an insurer paying for private treatment with rituximab outside the NHS
Have you contacted Dr Kogelnik to ask how it could be provided to you? There may be a possibility of the drug company providing the drug and your costs being the appointment and infusion costs. This was the case for one patient I know a couple of years ago. Worthwhile checking if you want to go ahead.
Sadly, much as I'm sure many of us would like to believe otherwise (myself included), I suspect Rituximab will never be obtainable as a treatment for ME/CFS on the NHS even if the most exhaustive clinical trials show it to be an effective treatment in a proportion of sufferers.
If NICE won't fund the use of cancer drugs such as Ramucirumab, Regorafenib, Nivulomab, Kadcycla et al. for patients who are dying, I can see little prospect of them ever funding Rituximab for patients who, according to the official line, don't even have a life-threatening illness.
In any future NHS I can envisage on current showing, "cost-effectiveness" considerations will put Rituximab out of reach for the vast majority of the ME/CFS community, even if it's shown beyond all doubt that it is a safe and effective treatment for the condition, and even if NICE can bring themsleves to acknowledge this.
I think you are probably wrong here and are being too pessimistic
IF/WHEN it can be shown in a number of well designed clinical trials that rituximab is a safe and very effective form of treatment for what is likely to be only a sub-group of people who come under the ME/CFS umbrella, then it should eventually get a product license for treatment of ME/CFS here in the UK, along with a positive NICE recommendation for use in specific situations
There is no dispute about the huge economic cost to the UK economy of ME/CFS - especially when it involves large numbers of people who have previously been in work and are now reliant on state benefits
So even though rituximab is going to be a very costly form of treatment, there are sound economic reasons why it should be made available (if clinical trials confirm safety and efficacy) to people with ME/CFS who are likely to benefit from it and are then able to return to being in employment
But all this is several years away. …….
I cannot see approval being given until there are results from a number of well conducted clinical trials (including at least one from the UK) confirming both safety and efficacy
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