Sunday, November 1, 2009

Advertising and Community

Hey, did everybody have a nice Halloween? Lots of trick-or-treaters? We had some but not a lot as it started raining here. And the felt like Bloomington, Indiana in the summertime.

Today I've got an observational rant brewing. So hang on tight.

I participate in a program online which sends me links to surveys on occasion, based upon information which I had shared when I initially signed up. During the past year, there have been many more surveys and polls which are related to health, specifically multiple sclerosis and rheumatoid arthritis (since I have both of those).

There was a survey which I participated in not too long ago, maybe sometime this summer, which was obviously geared towards improving a marketing message to those of us who have MS. I think that now I've seen the product of that survey.

Yesterday, I received both Momentum (magazine of NMSS) and MSFocus (magazine of MSF) in the mail. In my first flip through the pages of Momentum I came across a three page advertising for which is a Biogen/Elan website. Note to webmasters/PR folks who might come across this blog post.....fix your security certificate!! It is only valid for but not, although both versions of the URL are used in your advertising. Tiny, bad mistake. Fix it.

OK, the first page of the advertising is sparse and is what caught my eye. It has the following words:

"The MS community has a new place to call home. Welcome to the only online resource you'll need."

Community is becoming a huge buzzword these days. We have the MS Blogging Community, the MS online community (including blogs, forums, message boards, websites, etc), the MS community offline which include patients and healthcare professionals, etc, etc.

The thing which erked me about the statement above is that in NO WAY can there be only a single online resource that any of us will ever need. That simply looks down upon everything else which is available online to MS patients, including the National MS Society.

I'm sure that wasn't their intent but it was my gut reaction.

Then the phrase which revealed this PR effort was related to one of the surveys I participated in - "An MS Place of your own." Interesting that now the term 'community' is no longer used...because they have not created a community but have simply offered some online tools which might help you track your symptoms, organize appointments and activities on a calendar, and play 1 of 8 games online.

The advertising mentions "MS Video Stories" so I was interested to see what was there, especially in light of the vlogging which I am now doing for the website So I created a profile which was basically giving them my contact information, creating a login, and agreeing (or not agreeing) to receive information regarding MS and treatments from them.

Note: Drug companies are racing to get the first oral MS disease-modifying drug on the market and pre-launch activities have already begun.

Merck KGaA (EMD Serono) has Cladribine.
Novartis has FTY720 or Fingolimod.
Biogen Idec has BG-12, CDP323, and peg-Avonex.
Teva has Laquinimod.

As far as "video stories" I found one video which combined interviews of three MS patients with someone who dressed and spoke as a nurse. This video was available without creating a profile and I didn't find any others behind the sign-in.

Although this website is meant to be for anybody with MS regardless of treatment choice, the information regarding available therapies was embarrassingly skewed towards Biogen's products. Seriously guys, couldn't you have provided a bit more information (in a balanced way) regarding the other products.

The one thing which was a nice surprise was that the games are decent. They obviously paid someone to create (or licensed) a nice selection of simple games which kept my attention for a while. Someone does need to change the description of Sudoku, however, because it is not a mathematical game per se and each row does not ADD up to 9. Tiny mistake.

So that was my gut reaction. MS Active Source is not a new program or website from Biogen Idec and Elan, but it does have an improved navigation compared to the previous version. There's nothing really new here which can't be found elsewhere but it would be useful for newly diagnosed patients to get a rough overview of the disease.

P.S. Biogen Idec and Elan, I downloaded a couple of the pdf's you offer and suggest that I could print out a copy and take to my doctor. Well, seriously, you could have condensed the forms down to a single page as to save paper. The world is trying to "go green" and empty space is a shame. The forms look pretty but are not too environmentally conscious. Just my opinion.


  1. Do I REALLY have to tell you what I think? I think you know. My MS friend, they are playing you like a violin. You are in a good spot though, to report truth to the rest of us. Yes, the race is on for a pill that will do nothing more than what is available, but will sell more readily. They are just wait for FDA approval. All will rejoice! Yea! A simple pill! The greed behind all of this is sooo disturbing to me. And I fear more solid SOLID reasearch for medical intervention will dry up. MSers will be happy! (Until they relapse or turn SPMS in 10yrs) Drug makers will be happy! Drs, will be happy! sigh What a mess. LOL the URL...they think we are dummies/sheep (I wonder why?)

  2. Hey, you too can fill out surveys. The site is eRewards, although I've never cashed in my credits for a "reward." LOL. I get lots of stuff aimed at "business owner." Think things like Harris Polls and such.

    The URL security mistake is just plain stupid of them. And you can trust that I will ALWAYS speak the truth.

    On a related note, I've been pondering something lately. In your opinion and based upon your experiences, what could companies with money (ie pharma) do to improve the lives of those with MS?

    I've been trying to think of what exactly I might want from them is they were to ask. Something that would truly make a difference. What do you think?

    BTW, I'm not so sure that neurologists and patients are going to jump at the chance to take an oral medication. At least I wouldn't be so quick to switch based on delivery alone. (And my responses to the above referenced survey reflected that.)

    Technically, I'm two weeks MS-drug free right now. Imagine that.

  3. i receive, and flip thru, but rarely read those "magazines." i don't use their drugs, i don't feel much association with those people they depict having such a marvelous time with ms. if i wasn't so lazy, i'd try to get them to stop sending them to me, and let them just be trees.

  4. Lisa, I'm thinking R&D. But I think you mean small things---give grants/fund housing and custodial care for MS patients. Oh, and I have NO intention of taking a survey for a drug co., as I have told Shared Solutions: You want stats on how I'm doing? Mail me a check first. Answer MY questions first and send me a copy of all the data you have on me already and WHERE you got it from. They hung up on me, imagine that.

  5. Lisa, I do not even read the ads, pictured shiny, happy people are who allegedly have MS just makes no sense to me.

    I have a simple litmus test for any survey, how many Depends a day do YOU change? For some reason that question ends any interview.

    Caregivingly Yours, Patrick