This from an older article over at medscape:
Hmm, I kinda suspect Biogen and its concern for our walking does not extend so far as to mention that aspect.
On the basis of nonclinical evidence suggesting that the drug enhances action potential conduction in demyelinated nerve fibers, fampridine has been compounded in pharmacies and used off-label to improve walking in a number of neurological conditions for more than 20 years. "That off-label use was not based on substantial evidence from adequate and well controlled studies," the document notes.
Given, as I have previously mentioned, fampridine as Fampyra is really just a re-branding and re-purposing (and not of course the first drug in ms land to pop up with accompanying price hike in such a manner), this means if all you are after is the generic active ingredient..... rather than the expensive pharmaceutical marketing factor then it seems there is the possibility to get yee self with a generic script to a compounding pharm, hand over a more manageable $80 or so buckaroos a month and you are on your way??
Albeit still kind of pricey for an ongoing basis but decidedly less than the marketed version - even with its 'fourth month free' offer through a very specific online pharmacy that demands a heightened amount of personal info and history to do so. (Who knows, here in Oz if you have extras health insurance and if it is available on a private script then it might even be possible to get some of that back - don't quote me on that!)
MSNZ have a helpful page about it, including compounding pharmacy contact:
4-AP can be obtained from compounding pharmacies as a slow release formulation by compounding it with Methocel. But there is still a risk of inconsistent and excess dosing so it is recommended that the dosage is ramped starting on a lower dose and that you are careful to be aware of any side effects that you may experience.
While that may minimise the current cost dilemma associated with it (not being on the subsidised PBS here in Oz), the many other dilemmas associated with it remain:
- dodgy side effects
- danger of seizures if dose is too high or too soon
- bird poison into one's body on an ongoing basis
- what happens if you want to stop? Will it mean a rapid deterioration from what it has been 'buffering' against?
- how long can it be useful for? Presumably if you are getting progession and this helps buffer against that at some point it becomes moot the difference it is making, yeah?
Plus some new questions, like:
- where the hell IS my nearest compounding pharmacy?
- do I know a doctor who is open to this sort of prescribing? (I suspect most neuros are too square to contemplate it.)
- who can I rustle up if my doc is a no goer?
- (in Aus) why did the PBAC refuse to place it on the PBS subsidised listings?
A google search doesn't take long to find more info from compounding pharmacies already doing this. Perhaps this way of accessing it is common knowledge around the cyber forums grapevine too?? It was mentioned to me word of mouth (I know, I know that old chestnut communication tool :D). Here's one in the Melbourne area familiar with fampridine requests.
Here is the PBAC's response to the last question posed above:
The PBAC rejected the submission on the basis of unclear evidence of clinical benefit and that the economic analysis did not provide sufficient basis to conclude that treatment with fampridine is cost-effective.
Now if 'they' were promising some (ahemm keep yr pantz on), big-hair boot-walking results a lil more like this, I might be a lil more motivated to bother :))
One of these daze these boots, big pharma, one of these daze ... :))
(For a comprehensive writeup on just how far back the history goes on this drug check out Lisa's 2008(!) post about it over at Brass and Ivory. Veryily interesting reading.)