Friday, March 22, 2013

C.R.O.W.N Clinical Conference Philly: my perspective

I just got home from two days in Philadelphia where I had the honor of being part of a patient panel speaking on the topic of social media and clinical trials. The purpose is to help Big Pharma figure out how to best harness the power of the internet to bring research kicking and screaming into the 21st century.

I was invited by Jill Ozoveck of ExlPharma and want to give a shout out to her for organizing a great conference.

The moderator was Linda Strause of Vical Incorporated where she is Executive Director and Head of Clinical Research. She also has the unique perspective of having been a caregiver to her late husband who suffered terminal brain cancer. She understands both the research and patient sides of this conversation.

The panel was comprised of myself, Kerri Sparling of Six Until Me, (addressing diabetes), and Sean Ahrens of (for Crohn's Disease). My two fellow panelists were young enough to be my kids, but smart enough to teach me a thing or two about not only social media but public speaking.

We gathered in the conference room at 7:45 a.m. to have a pre-conference discussion and strategize about the direction we wanted the presentation to take. It was going to be one with audience participation as we wanted to start a dialog with researchers and engage them in how to best utilize social media for recruitment and retention in clinical trials.

We had five minutes to introduce ourselves as the panel kicked off. In sticking to my tried and true patented method of When in a Panic, Get It Over With Quick, I volunteered to go first.

Let me preface what happened next with a little back story. I have been speaking as a patient on behalf of Novartis, sharing my experience with MS and Gilenya for over a year now. I have become comfortable with speaking and no longer practice all night the night before in front of a mirror, stressing out about the weird tics, funny southern twang, or letting a "ya'll" inadvertently escape my lips.

So, the night before this panel I was sleeping like a baby after glancing over the notes from our conference call a few weeks earlier, telling myself  "you got this!". Instead of sweating it, I went to sleep. So there was no organization to my thoughts whatsoever. As they mic'd me up with the lavalier microphone and Sean was busy working with the sound guy to figure out how to get his Power Point and video set up, I told them I wanted to go first because "no way am I following a slideshow intro."

But what came out of my mouth was just as much a surprise to me as it was to my audience. Totally random and from my heart. I figured I reach people better when I talk to them as if it's a conversation anyhow. It is more genuine and even though I'd like to be more sophisticated/organized and have my own video or slideshow, speaking as if we are all hanging out at the kitchen table is apparently preordained to be my style.

I opened with how happy I was to be there as part of the panel in Philly that day because I am from Florida and hadn't seen snow in thirty years. I got some laughter, but Kerri got more when she started her intro and said she didn't share my sentiments about the snow because she's from RI and she's "over it."

All joking aside, we had a great discussion and I think it was more than that. It was also almost a brainstorming session about how to connect with patients in order to recruit them using today's technology. My suggestion was to "go viral". If Grumpy Cat can do it and we have all seen Pepsi's test drive with Jeff Gordon then why can't Big Pharma reach out to the American public just to say "hey, we're here if you want a viable alternative to those treatments that aren't working any more." They wouldn't have to directly try to "coerce" people to join a specific trial, but let's face it, Big Pharma's research department needs a PR team.

Do what marketing does for your drugs after it gets approved. We know your hands are tied by the FDA when it comes to what you can and can't do, but like Kerri said (an analogy I will never forget) "There's still a lot you can do with handcuffs on!"

Let me illustrate what I think the problem is here...

Things have always been done a certain way in regard to how researchers view the patients, or "subjects" (a word that insinuates researchers are masters of their "kingdom" as Kerri pointed out, and we are the subjects.). This tunnel vision that has developed from countless years of focusing only on the data-gathering side and less on the human factor needs to be addressed.


When the conference broke for lunch, the attendees started pouring in. I was hovering near the buffet and jumped in front of the pack. There were huge dinner plates near the entrees and hot sides, but then over by the salads they had another stack of huge dinner-sized plates.


I heard someone say they had to go put their dinner plate down and come back for the salad because the plates were so huge.

My solution:

This was when I look around the room and saw the dessert bar. Small salad plates stacked up for you to carry your selections on. I grabbed one of those and put my salad on it. Problem solved, table less cluttered with huge Frisbee sized china.


The gentleman who had commented about the size of the salad plates, yet complied and took one because it was the "designated plate" commented on how smart I had been to use the dessert plate instead.


I see this as a clear demonstration of our two ways of thinking. He was an attendee from the research side of things, and I was a patient speaker there to hopefully give a panoramic view of the World According to Social Media to those researchers who can only see the sky from their vantage point of looking up from the box to which they have confined their methods.

Maybe it's because I'm uncouth and lack etiquette that I DARED grab a dessert plate and unceremoniously plop my mixed greens atop it and splatter it with vinaigrette while others watched in complete and utter disbelief (with possibly a little horror thrown in). But I just saw it as the sensible, logical thing to do. Why should my dining experience be defined by someone else's idea of what size plate I should use to transport my nutrition? The plate is but a soulless vessel that cares not what it carries. I should mindlessly believe that the person given the task of setting up the buffet did the right thing in grabbing the dinner plates to position next to the salad? What if later we all found out he was reprimanded sternly? "You fool! You put the dinner plates by the salad instead of the bowls you were told to use! You're fired!"

We as diners let the Pied Piper/Plate Provider lead us over the cliff of Unnecessary Table Clutter, mindlessly doing as we were instructed.

But I'm the type of person who hates to be told what to do. Ask my mother. I do what seems right and what makes sense. And the more empowered and confident I become, the less likely I am to care about what others around me might make of my odd behavior. My youngest son, who is a freshman in high school and learning how to fit in (grossly overrated in my opinion), is always on guard for me to say or do something unexpected and thoroughly embarrass him with my bold and blatant lack of concern for conformity.

Hence the dessert plate holding my salad.

What does this have to do with social media you ask?

Good question. The answer is nothing. And everything.

If we want to drag Clinical Trials into the 21st century kicking and screaming, and clinging to outdated methods, we need to only look as far as the dessert plate holding the salad.

Face it, your big dinner plates are crowding the table with your smidgen of salad.

Look for fresh ideas in places you haven't yet. Social media doesn't have to be the unknown, intimidating medium. Use it to your advantage. Knowing you are cuffed by the FDA in that you can't do all you want in terms of reaching your patient audience, you can still kick your feet and make some waves.

I want to say to patients about the idea of considering a clinical trial: "You can do this! It's not so scary and it opens up more options available to consider."

On the other hand, I want to say to researchers: "You can do this! Embrace social media and leverage it to educate people on what you're all about. Take away the bad rap that plagues Big Pharma. Where is your PR firm letting us know that each and every one of you got into this line of work because you are driven to make people's lives better?"

Connect. Educate. Recruit. Retain.

Expedite Quality of Life for everyone.

Use Twitter, Facebook, YouTube, Pinterest and any other conduit for connecting.

Help me get a panel of patients before the FDA so we can start a conversation about where social media fits into all of this. I'm here and willing to keep the conversation going. Let's do this!

The panel discussion ended all too soon and I had to depart after lunch to have a mini family reunion with my brother and his wife. They drove from Annapolis over to Philadelphia to spend the day with me.

We walked around Reading Terminal Market and had a great time. Sat down at a lunch counter to get a cheese steak and ended up having a pork sandwich instead because DiNic's doesn't do Philly Cheese Steaks. But the pork was fabulous.

My view from my room was something ingrained in my brain forever. Philly is a gorgeous town. Highly underrated.

For your viewing pleasure, I had grouped these photos at the bottom of my blog post. Actually, that's where blogger added them and I'm too lazy to rearrange everything. Enjoy!

I felt so small! High ceilings, huge mirrors, gorgeous accommodations.

I thought I'd check out what was on TV... until I glanced out the window. I was mesmerized just watching the city for a while.

The view went on seemingly forever.

So THAT'S why the room was so expensive. The 50lb terrycloth too big robes.

Almost late for the pre-conference meeting when I looked out and saw SNOW!!!

and another shot of the snow because you can't have too many pics of the snow when you're a Floridian. That's Reading Terminal Market under the big roof on the right.

Spotted a Regina Holliday jacket when I entered the conference room and snapped this pic before I realized it's Craig Lipset, my hero and mentor who interviewed me in Boston, making the "fashion statement". He's talking to Sean (, one of my fellow panelists.

A look at the setup. Slideshow to the left had the basic bullet points we were going to cover. Podium where Linda spoke from, and the panel table to the right behind the guy stretching. (I believe he and the other gentlemen were members of the panel which took place right after ours. I'm terrible with names.)

Another shot of Craig and a little more showing the arrangement in the room. The room was huge and the estimate of attendees was 200-250. All of them, eyes front and center. No trouble keeping their attention.

Craig again (he would NOT get out of the way. j/k Craig) and here you can see the table at which we sat. See the stairs to the right? I ended up using my hands to walk myself up them as there was no handrail and my perpetual state of MS dizziness was begging me to fall down.

The only outdoor photo I got of the venue. From my window in the back of the limo as we left at 5:45am to head to the airport. My brother got some awesome shots, however they are still on his camera so sharing them will have to wait. (Tapping my foot here, Dave. Can you hear that?)

Monday, March 4, 2013

My Diagnosiversary

My brother's birthday is Wednesday so I took Mom out card shopping. On the way home we were discussing how it would only take one day to reach him and let's see, what's today? March 4th? It won't be a problem.

"WAIT! March 4th? Really? Do you know it's been 14 years today since I was diagnosed with ms?" (I refuse to give it the power that capital letters infer). That's a long time. It's six months less than my teenager's life span. It's nearly half of my 30-year-old's life. It's elderly in dog years. It's over a quarter of my own life.

Then, as if it were a gift to me, I saw a post on Facebook where a friend who also has ms had shared this video:

I put the headphones on and gave it a listen. To my surprise I had tears streaming down my face. 

The tears at first were for sorrow at the loss of a life free of ms. Then they were from shame that I should cry when so many are suffering so much more from this disease.

I am truly blessed that I have found a treatment that has worked so well for me in Gilenya. I was led, almost pushed, down a path made by fate which brought me from darkness and despair, on the verge of suicide, into a light that now shines on everything. It's the light of Hope, the light of Time Bought. Being relapse-free this long has let me catch my breath. It's let me feel like I'm a part of my life again and not just watching it pass me by.

If not for my despair back then, I don't know if I could have had the courage to join the clinical trial. I would have let my hypochondria and fear prevent me from believing anything good could come from it. Perhaps I should be thankful that my ms was impacting my quality of life to such a degree that I didn't care if the trial killed me -- I was already contemplating death as a viable option.

Slowly, over these many years since starting the trial, I have let go of the constant fear of an impending relapse. Like a big shoe that hovers over my bug-like self, waiting to squash me flat, render me helpless. That's what ms is. The monster shoe we all try to escape. 

As if Kharma said "Look, about the ms thing, I'm sorry. Here, have this opportunity," I am now a patient advocate and have the honor of traveling the country, sharing my Gilenya experience and my passion for Hope with other ms patients. Everyone needs inspiration in life. I feel this is my calling. Nothing, NOTHING compares to a hug from someone who says "you touched my heart with your story." That's what it's all about. Connecting.

Got off on a tangent there...back to the video, which is what the post was originally about. Well, that and my diagnosiversary.

I noticed all the beautiful women in the video who have chosen to get tattoos "honoring" the disease. I have pondered the idea before. I have no tattoos, but this is something I have come very close to considering.

In the end I have come to the conclusion that I have given all of myself that I am going to give to ms. I fight it every day not to rob me of anything else. It has already scarred my brain and spinal cord, robbed me of so much time I could have spent involved in my children's lives rather than just watching them grow up. No way am I going to suffer more pain in the name of ms or let it scar my skin as well.

Besides, when the day comes that there is a cure, I don't want anything left to remind me of what I left in the rearview mirror.

This is ms awareness month. Go learn something, or share something, or donate something in the name of stamping out this dreadful disease. 

Do it so we can all quit marking our diagnosiversary and one day say "THIS IS MY CUREVERSARY!"

Now, THAT would be something to celebrate. :)