Tuesday, 20 March 2012

Xiapex in the UK


So today I thought that I would cover some news that I saw on the British Dupuytren's Society twitter feed and on Facebook. The news was:

"NHS Devon has approved use of Xiapex for Dupuytren's contracture subject to some conditions. Will post link later on the BDS website"

What does this news actually mean for Dupuytren's sufferers and indeed for Ledderhose disease sufferers. Firstly a look at those with DD. I guess I will have to refine myself to Devon for this. So my understanding is that you now have the option to have Dupuytren's disease treated with this enzyme rather than having to resort to surgery. Clearly, assuming that the conditions are passed, this is going to be a good thing as it means that you are now able to have an injection as your first or second line of treatment rather than having to have your hand cut open. My opinion on this treatment though from articles that I have read (I'm assuming they are the same thing???) is still that it is only a measure to delay surgery and whislt these are welcome they are not a cure and not what we are looking for but progress for sure.

Now from my point of view as a Ledderhose patient. So the positives are really restricted to the fact that this treatment is now hopefully on its was to being approved for use in the UK for a different but related disease. The frustrating thing is that it is not being considered for Ledderhose as I think that in a lot of cases the 2 diseases should be treated fairly equally as they are thought to be of the same cause and same background and much research has suggested they are more or less the same disease in different locations. I am also of the opinion that this is a treatment much like steroid injections as it is only a case that it holds the disease off for a while.  The data that I have seen suggests that this one is somewhere between steroid injections (a few months) and radiation (a few years) in terms of holding it back. 

What I really want to see and what everyone wants to see is something that cures this. Is this even possible? I mean I personally believe that there will never be a universal cure for something like cancer and look at how much research goes into something like that so what chance does this little, not life threatening disease have of getting the funding to even get close to something that permanently fixes it. I believe that we may one day have a drug, much like Xiapex maybe that causes the lumps to disappear 100% of the time but only for a finite period of time because if it is genetic and you are predisposed to it then it is going to come back. 

Still progress is progress...