This video is an update on my efforts to persuade my local healthcare trust to prescribe exenatide for me.
Hello welcome to road number 110 this week i’m going to give a brief update on my quest to be prescribed leagues an aside from our local health care trust i contacted my member of parliament normal i’m about the situation he agreed that given the sports three health care professionals it was reasonable to expect local health care trusts to allow me to be prescribed
This drug and he wrote letters on my behalf to the north norfolk clinical commissioning group or ccg and the chief executive of the local health care trust good little 108 i discussed the response received from the ccg in which they local digs analyze a drug licensed for type 2 diabetes but the experimental drug and restated their refusal to fund it for me since
Then i’ll smallville to rights my london neurologist who supports my request for this truth to ask her it should be prepared to submit individual funding requests for my behalf so hopefully she really ready to do this in the meantime i have received a copy of the response from the chief executive of the health care trust he correctly states that the decision to
Prescribe this drug lies with the ccg but for some reason because it necessary to provide background information to place my request in context much of this background information is inaccurate loop is to be designed to put my mp things i’ve got my facts wrong so i could resist the temptation to respond in detail and set the record straight firstly the chief
Executive attempted to trivialize the findings of the recent clinical trial of his other side by stating the patients that received exam times were four points better well scalable in those two points and so the correctly questionable benefit of just 3% he neglected to mention that the scale employed boustany was the unified parkinson’s disease rating scale or
You pdrs but the average parkinson’s patient will be expected to increase that’s cool but two to three points on the pdrs over the course of the study and that those who received you examine ties decrease their schools on average by one point or so to sing of the placebo deteriorated as expected i think this is a very significant outcome when put into its correct
Context next the chief executive justifies not prescribing identified by stating that minority er ologist does not have any experience for prescribing it to parkinson’s patients well that’s the easily remedied isn’t it then the chief executive says that customers exercise when prescribing the other side even for those patients with diabetes due to a long list
Of significant side effects side effects are no more frightening or serious than those of multiple which is a labor delegation commonly prescribed a pd finally he suggests that since there weren’t any patients for deep brain stimulation will dbs on the trial there’s no evidence that it would be beneficial to song with dbs the fact that i’m half dbs indicates that
Have severe pd this seems extremely disingenuous to me he should know that the reason for excluding patients with dbs from the clinical trial was to prevent the securing of taser by any improvement that may have been due to the presence of the dbs hardware romney’s an aside further you should have been aware that dbs is no longer considered to be a treatment of
Last resort it is these days meant to be of such benefit to call it life that it is considered a much earlier stage and so may no longer be indicative of disease severity so i’ve emailed my response to normal um and eagerly await his reply thanks for watching if you have any questions on top of the allow me to cover in future vlogs just leave me a message in the
Comments i’ll do my best to respond have a great week see you next friday you
Transcribed from video
Vlog #110 – Exenatide Update By Ian Frizell