Tuesday, September 21, 2010

New Drug and Pharma Promotional/Support Materials

Today is the day.  The FDA will approve FTY720, Fingolimod, Gilenia, or whatever the final brand name will be, as the first oral disease-modifying drug for relapsing-remitting multiple sclerosis.  Trials are still underway testing FTY720 in primary-progressive MS.  I say that the FDA will approve the drug because I can't imagine that they won't.  More information will be available later.

The New York Times has a good article about the FDA's approval of Gilenya.  Yep, that's the official new spelling.  Bloomberg has an article which discusses the approval and mentions the "race" with Merck's cladribine.  Actually all the articles I read (some obviously slapped together) mentions other anticipated oral drugs for MS.

So if all goes smoothly, Gilenya should be available within months...maybe even by the end of the year

Over the weekend, I read a PR blurb about a new exercise program, Fitness with Katrina, released by MS Active Source® and Biogen Idec and Elan Pharmaceuticals.  Biogen is the pharma company who produces Avonex, and Biogen and Elan co-produce Tysabri.

Earlier this year Biogen and Elan released a yoga program/DVD called MyMSYoga.  This program held four in-person classes with Baron Baptiste, the latest occurring in May.  It doesn't appear that any new information has been added to the website since then.

The idea of producing exercise or yoga videos to distribute to MS patients is not new.  In fact, I have a couple already.  However the distribution method is different.  Previous DVDs were included in drug information packages for newly-diagnosed patients, or they were available at at company's information table at MS-related seminars.

One thing I've been telling folks, when they ask, is that pharma companies should use some of their resources to support ALL MS patients regardless of whether they use that company's product or not.  I also have been saying that patients really need support and assistance in their in-person lives.

Maybe MS Active Source® (from makers of Tysabri) is establishing their niche by producing this material for wide distribution.  It is good marketing to be sure.

But is it a good service for patients?  I'd like to hear what you have to say.

Oh, and here's a little side story.  Back when the yoga video was released, I received an email from a PR person asking if I would like a copy.  The only reason I was sent this email is because I'm on some pitch-to-me healthcare blogger mailing list.  (I didn't really ask to be on any mailing list, some larger PR company put me on the "list.")

I didn't respond to the email but I did sign-up (as a regular patient) to receive the DVD.  Well, the DVD never came.  I waited and waited.  Finally I sent an email to the original PR person and said that I would indeed like to see a copy and that I had not received one through regular channels.  He apologized and sent me a package immediately.

Within that package was included a copy of several adaptations to yoga positions which could accommodate various levels of abilities.  I enjoyed the hand-out just as much (or more) than the DVD.

A couple of months later still, I did finally received the DVD through the regular route with great apologies that due to a glitch in the system some of these items had not been previously mailed.   There was no print-out or booklet containing additional yoga information included in that mailing.

If I found that extra information to be useful, wouldn't most other patients?  Wouldn't including the additional material be providing a service beyond their call of duty?  Perhaps this hand-out was provided at the four in-person classes led by Baron Baptiste.

It does make me, as a patient, feel a bit more appreciated as a person when companies demonstrate that they understand I am more than my disease or treatment of choice.  I am somebody who focuses on overall well-being (at least I should, lol).  So I signed up to receive this new exercise video.  Perhaps I will gain some motivation to move more.

That's good and worth it, right?


  1. Hopefully they've gotten a little more organized for the release of the new DVD! And, maybe, they could upload the additional yoga positions to their website as a down loadable PDF for the people that did not receive it with the DVD. Lastly, (lol), I think it's a little ironic they marketed an at-home yoga DVD, targeting MS patients, only via in-person classes. I wonder how well the classes were attended?? :)

    Thanks for the information! I'm going to go check it out now.

  2. I have done yoga for years now, getting my first free VHS tape from the NMSS years ago. Since, I have simpy fashioned my own program. You know me, I wouldn't be interested in a drug companies DVDs; I would much prefer they put ALL their money towards a cure and myelin repair. THEN I would gladly take a look at the info about exercise. Gee, I wonder if their drug is mentioned at all...during the classes...hahahahaha