2014 MS Blogger Summit, Day 2

When I received an invite to attend an “MS Blogger Summit”—with travel, accommodations and food comped for me and my caretaker (aka wife)—my right eyebrow went skyward and my Spidey Sense started to tingle. Either that, or my MS was just acting up. In any case, I was suspicious. While I’m not anti-Big Pharma, I prefer to keep them at arm’s length, approaching them with the same caution I’d use when stepping over a barbed-wire fence or juggling chainsaws.

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/

Jeri Burtchell: http://www.partnersinresearch.org/novartis-ms-blogger-summit-recap-mssum-spons/

Jodi: http://www.jodibeansblog.com/2014/02/ms-blogger-advisory-board-summit-in-nj.html