Why would a drug company summon a gang of nine bloggers, most
of whom did not use their product, to dissect their outreach to the MS
community? More than a few of us were skeptical. After all, while the Novartis folks
we were meeting with work in a variety of arenas within the company, they all
still are working toward the same ultimate goal: sell more product. How would
they try to woo us beyond free-flowing Yellow Tail and 14-second limo rides?
Curiously (and thankfully), they didn’t even try. Instead, all 11 Novartis reps—not
just specialists in social media, advertising, marketing, and public relations,
but nurses and neurologists—listened intently, asked relevant questions, and answered
concerns. (Thanks, again, to those ActiveMSers who submitted questions to me in
advance.)
Our panel of nine was moderated flawlessly, which maximized
our time and allowed us to tackle myriad topics, from the nitpicky (easier-to-open
packaging) to the global (how to better assist the MS community). The one thing
that was rarely discussed: Gilenya. The expected sales pitch never came. But we
were all candid as to what was wrong with the pharmaceutical industry in
general. Lack of transparency. Lack of honesty. Lack of authenticity. Blogger
Matt Allen said it best: “Enough phony images of people flying kites and riding
bikes.”
In truth, all pharmaceutical companies are somewhat hamstrung
in their outreach, for better or for worse, by strict FDA regulations. Many of
these regulations make brilliant sense and we need them in the industry. But
some, hmm. For instance, every Gilenya Tweet needs to be approved by the FDA.
Every. Single. One. Even if it has nothing to do with the medication. The
four-word Tweet “Have a great weekend” would need approval, which takes days.
And there can be no mention of multiple sclerosis or any benefit of the drug
without a complete list of all the side effects. So don’t be personally
offended when they don’t respond for days (or ever) to your Tweet or Facebook
post—they can’t. And when regulations change, which is often, web pages (like a
YouTube channel) will randomly go down so drug companies can revise them to
come back into compliance. It’s a tricky dance, like trying to cha-cha while
skydiving.
If there was one general take away with our posse of
posters from the summit, it did serve to at least humanize Big Pharma. They
listened, and listened intently, or at least so it seemed. Hopefully some of
our advice—and we tossed out lots—will be implemented, and the MS community as
a whole will benefit. But before we all join hands and sing Kumbaya, a few too
many on the Novartis side of the table used the phrase “fair and balanced,” as
in that’s what they were striving to accomplish with their outreach. That’s
like saying “I’m trustworthy, so trust me.” Guys who say that, well, I don’t
trust. It lacks authenticity. If you are truly “fair and balanced” you should
never have to say so—it should be readily apparent in your actions. Novartis
clearly has work to do, as do all pharmaceutical companies, but after our
summit, it appears they may be on the right track.
For takes from a few of the other bloggers at our
meeting, all of whom I now consider friends, click on the below direct links.
Nicole
Lemelle: http://www.mynewnormals.com/half-full/
6 comments:
It's always good to humanize each other, no matter how difficult it is to implement.Am I always successful at this? Nah. But, I'd like to think I keep an open mind. Thanks for your update.
Thanks Judy. Keeping an open mind, especially when it comes to polarizing subjects, can be challenging at times.
I always considered the battle as " them" vs "us." now they seem a little bit closer to me. also to be honest, I have always been on some agent one way or another.
I know, Nicole, strange. I could share a beer with any of them at Novartis. Well, except for that one person, and we know exactly who that is. ;)
I think the pharmaceutical companies deserve "Fair and Balanced". I assume they mean the positive and the negative by that. There are a lot of positives, things like support for the MS clinics, support for PWMS who cannot afford the therapies, even some of their lobbying in Congress is a positive for PWMS, and of course their constant search for new and better therapies.
There are negatives too, they don't seem to search for cures in addition to therapies. They come across as greedy at times although as a stockholder in some of the pharmaceutical companies, I haven't seen a lot of that greed passed through. I do resent their purchase of newly discovered existing therapies only to get them approved under a different form and charge an exorbitant price for them (as happened with Tecfidera).
As a taxpayer and one who has watched his insurance premiums skyrocket, I resent their manipulation but as a PWMS, I love it.
If it was really Novartis's intention to improve their outreach to PWMS, I hope they find a way, and I hope they're "Fair and Balanced" too. I can't help but wonder what they took away from the summit.
Larry
AKA: AMf Adventures
I wonder what they all took away from the summit as well. Apparently it had been in the works for a long time--since July 2013 at least. And the core Novartis group stayed long after our summit ended, deep in discussion. Closed doors.
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