Monday 28 April 2014

they can read all about it...

I don't know about you, but I tend to leave boring looking post unopened for as long as possible.  Bank statements, newslettters, insurance quotes... whatever.  If it looks boring, I'll leave it on the rack next to the front door until my wife finally despairs and processes it for me.  Occasionally, I'll cast my eyes over a pre-sorted selection of this mail and decide which ones to bin and which ones I'll reluctantly have to process.

Yesterday, I was slightly surprised to see that this pile awaiting my attention included an exciting looking lifestyle magazine.  A closer look showed that "INTOUCH" magazine was billed as "Your Avonex newsletter" and had apparently been sent to me directly by Biogen Idec, the drug company who manufacture the beta-interferon 1a that I inject every week to try and slow down the progress of my multiple sclerosis.  My first thought, given that the drug is prescribed to me by the NHS and delivered directly to me from them, was to wonder how on earth the drug company had managed to get hold of my personal details.  I don't remember signing a release, but I suspect it might be part of the package for the NHS to get a discount (apparently the cost per patient to the NHS for a year's supply of this stuff is £8,000 - that's £150 a pop.  Not cheap for something with little evidence it does anything).  

Security of data issues aside, what delightful lifestyle articles could my drug company have to offer me? Well, there's some news about medicine adherence: how around 30-50% of people with long term illnesses aren't taking medicines as they should do.  Hmm.  Why might a drug company be interested in people not skipping doses?  There's an interview with a nice lady who has been injecting Avonex for the last eighteen months and she tells her story.  She's doing well, you'll be pleased to hear, and has seen some of her longer term symptoms start to disappear.  She's pretty happy about that and that's good right?  She says "Before starting treatment, I had yearly episodes with my eyes. I haven't had an incident since the one that led to my diagnosis in March 2011".  I mean, there's a footnote saying "the opinions expressed in the patient interviews in this newsletter are the personal opinions and feelings of the interviewees and should be considered as such.  In no manner should such opinions be considered as representing Biogen Idec's views or statements".  Yeah, because they make no claims that Avonex will halt the symptoms of MS and have very little evidence to suggest that it does.  Obviously, if you want to infer that from the interview.....well, that's up to you.  

There are also articles on MS in the workplace, on good mental health, recipes for soup and creme brulee, a wordsearch, a quiz and a sudoku.  Quite the publication.  But.... what's the point?  On diagnosis, I was offered a choice of a number of disease modifying drugs; none offer a cure and all offer variously shaky statistics on how much they might slow down disease progression.   Doing nothing was a perfectly valid choice, but I decided that I would rather take a chance on something working than the certainty of doing nothing.  I chose Avonex because, although it had a longer needle and required injecting into the thigh muscle (rather than subcutaneously), you only needed to do it once a week and not every day or every other day like the other drugs.  You could also get it in a form that didn't need to be kept in the fridge (apparently you can feel a chilled drug going all the way in and I just didn't fancy that at all).  It was as simple as that.  There's some evidence that it might not be as effective as one or two of the other choices, but there's also evidence that it is better tolerated by the body over longer periods of time and you don't develop antibodies that counteract it as quickly.  

That was it. 

Does a glossy lifestyle magazine affect my choice of drug?  Not really, because I've already made up my mind.  Would I like to change?  Well, actually I'd quite like someone to come up with a treatment that doesn't require injection.... and of course I'd really quite like someone to come up with a cure.  Are Biogen Idec interested in either of these things?  Well, they make $2.91b a year out of Avonex, and most people who are on it are cash cows who will continue taking it indefinitely.  Biogen Idec's motivation for R&D is essentially to make sure that they have a product that is at least as attractive as the other similar drugs on the market - a market that they reckon will be worth $21b by 2018.  To be fair, they are working on a version of Avonex that needs injecting less often, and they've also got big hopes for a tablet based therapy called Tecfidera, but that is another patient milking drug you need to take every day with the aim of slowing down disease progress, not a cure.  As people would naturally prefer to take a tablet rather than inject, the forecast is that this will be worth $4b by 2018.

There's an awful lot of money in not finding a cure for MS.  If I'm totally honest, I wish they'd spend a bit more of it on research and a bit less on lifestyle magazines.


  1. i had a similar sensation when i received my first copy of the Rebif-themed MySupport magazine (quality heavy-stock paper, perfect binding) and accompanying App - i wrote about it here, which led another reader to post the following eye-popping figures - three years old, so i'm SURE the prices will have gone done now, right?

  2. It should be eye popping enough that our american friends are charged something like £25k for something the NHS pays about £8k for me. There's plenty of incentive to keep up with the joneses - apparently including sending out lifestyle magazines, but also to find better and more accessible ways of administration - but precious little for funding a cure. We're cash cows. There it is.