Half-Full

I met with the big bad wolf this weekend.

Love them or hate them, pharmaceutical drug companies are here to stay. The odds are that if a cure is ever found, it will be discovered by a drug company.

For that reason, I decided to take an offer to attend the first MS Patient Blogger Advisory Board meeting hosted by Novartis Pharmaceuticals Corporation. I was surprised they asked me to attend because I no longer take their MS drug Gilenya, but I was very honored they did. They paid for me to go to Morristown, New Jersey and be a part of the advisory board. Don’t worry, I’m not going to try and sell you on the benefits of using Novartis products. As a matter of fact, to my surprise Novartis really didn’t talk too much about their company’s products. The focal point of the event was the accuracy of their marketing in meeting the evolving needs of MS patients.

Along with a group of eight other MS bloggers, I was asked for input on communication needs within the MS online community and feedback on some of Novartis’ social media channels. It was interesting to find out how drug companies work as far as marketing and the government guidelines they have to follow.

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As far as the trip itself, it turned out pretty good considering that traveling can be a challenge for me. My husband, Tommy, and I went from 55 degree New Orleans to 7 degree Morristown, New Jersey. Yikes! We flew United Airlines, so that meant I had to use an aisle chair to board the airplane. It wasn’t so bad this time. I think that’s because I know what to expect now. Once we got to New Jersey, I was nervous because there was snow everywhere, which was a problem because I was using my scooter and it isn’t waterproof. So I was happy to find out that all the events would be happening inside our hotel and we would not have to venture out into the snow that much. The hotel was also connected to a mall so that made me really happy.

The best thing about the event was that I got a chance to give my input to a company that is searching to find a cure for MS. The only way to change what we think is wrong with pharmaceutical companies is to engage with them and if they initiate the conversation that means they may actually listen to the suggestions. I believe pharmaceutical companies engaging with patients is a positive step. Yes, it’s about profits but by exchanging dialogue with them, maybe we can make it more than that. So when it comes to pharmaceutical drug companies I will look at the glass as half full and not just consider them as the big bad wolf.

I also got a chance to put faces to the names of bloggers I have been reading for years. It was an honor to be amongst peers that not only understand but are also going through the same things as myself.

Check out my fellow attendees and their blogs:

·Dave Bexfield – Dave’s Active MSers Blog
·Jamia Crockett – My MS Heels…My MS Heals
·Jeri Burtchell – Partners In Research
·Joan Wheeler – A Short In The Cord
·Jodi Bean – Jodi Bean’s Blog
·Jon Chandonnet – Jon Chandonnet
·Lisa Emrich – Brass and Ivory and Carnival of MS Bloggers
·Matt Allen – Matt’s Multiple Sclerosis

Nicole with Lisa Emrich (Brass and Ivory, Carnival of MS Bloggers)
Nicole with Lisa Emrich (Brass and Ivory, Carnival of MS Bloggers)
Nicole and Dave Bexfield (Dave's Active MSers Blog)
Nicole and Dave Bexfield (Dave’s Active MSers Blog)

Author: Nicole Lemelle

My name is Nicole Lemelle. I am a writer, activist and a person living with Multiple Sclerosis. I created My New Normals to educate those who do not understand MS, reassure people with similar plights and inspire everyone to seize command of their lives.

36 thoughts on “Half-Full”

  1. Nicole your site never fells at keeping my attention with such relevant content,this truly sounds like the meeting of great minds!!!! Dallasite here

  2. Finally they’re getting it! When MS takes me on yet another journey and leaves me with another challenge the first resource I turn to are my MS peeps in the blogs! I always find support as well as options to modify life so I can continue being a wife, mom, friend or guest at someone’s event or even just be me. The bloggers are MS chicks (or guys) just like me. Who better to look to for advice and recommendations! We MSer “get it”! It might sound crazy but I’m a believer in the saying that God doesn’t give you anymore than you can handle so He must think we MSers are super heros!!

    You were in Jersey during the coldest and snowiest month! I’m about 15min from where you were. Usually it’s a fantastic area to live. You have to come back in warmer weather! Central Park is gorgeous in the Spring!

  3. Hi Nicole!! It was great to meet you and the rest of the gang in NJ at the Blogger Summit. I have been in cahoots with Novartis for a while now since becoming a patient speaker for Gilenya and one thing remains consistent — their seemingly sincere devotion to connect with the MS community and understand us and our needs.

    That can be a challenge, as we learned, since they are so heavily regulated by the FDA. I think we gave them a lot to work with however, and I have a good feeling that it didn’t fall on deaf ears. They will implement all that they can.

    Hopefully they will have a bigger summit and invite many more bloggers and we can get together again. Loved meeting you, love your attitude, and you have a great hubby, too!

    And you are way too quick on getting your thoughts blogged. Looks like you win the race to see who was “FIRST!!”. 🙂

  4. It was wonderful meeting you in person Nicole as well as so many long-time, online friends. It is important to share our thoughts and represent the MS community needs so that companies know how to best serve those needs. Very important to use our voices when given the opportunity. 🙂
    Lisa

  5. Thank you for visiting my blog Nicole and your reference to Cindy Gibson-Horn! As a PT, she truly understands the walk of patients with MS and the struggles we face. Forever grateful for the stability BalanceWear is providing! I’m able to do what I enjoy without the fear of falling. Priceless for me! I love the fact it allows me to sit without swaying. Do you have one? I know when my PT first told me about BW, I sent an email to Cindy Gibson-Horn, who did respond and provided such genuine guidance and recommendations. She made my day!

    I believe Pharmas are in a sense of panic right now and realize the value of social media today. I truly believe their “Ambassador, Patient Representatives” programs – pairing a patient living with MS with a MS neurologist providing medical information – is so helpful for patients. These programs are subcontracted with pharmas – brilliant legal move on their part. They are very involved with these programs, right down to JRC (joint regulatory commission) sharing what is legal on the business front. You do represent the company. However, while it never was said, I knew following my presentations, it was the hope patients would convert to my DMD. I would always refer patients to their neurologist to discuss if this was a good option for them, worked for me, but not for everyone. Rebif was my third DMD.

    Today, with ten DMD’s now available, pharmas want to maintain their current business and scripts, makes sense. There are some very positives shining brightly!

    So much to be hopeful for in the future. My BalanceWear is one new tool that makes me smile and provide quality of life for the activies I love. For that, I want to educate and share! 🙂 There are many new drugs in clinical study as we speak with the hope to “repair and regrow” damaged myelin. Answer to prayer, We will be ready to go!!! My neuro isn’t thrilled with the bone-marrow option right now. “To risky” so I’m hopeful for other options.

    Keep up the great work and look forward to reading your blog!

    Catherine

  6. Hey Nicole,
    How fitting to visit Super Bowl country at this time of year and the crowd you were among is like attending the hall of fame ceremonies for bloggers! Seriously, what you do is so important and to be able to give our disease a face and voice is invaluable. Thank you! And let’s keep it real, how many of us would give every dime they have to find a cure? I would, so profits away but just find the cure. I’ve tried to keep up with the progress and I don’t really care at this point if they find a cure in my lifetime, while I would sure appreciate, I would be happy if future generations could live free from MS.

    And speaking of cold, Sundays cool weather combined with my MS and neuropathy caused intense pain and numb feet durin 12 of the 13.1 miles I ran but I did it! Finished my first 1/2 marathon, MS and all. Less than .2 % of Americans can say that and I did it for me, you, and all our fellow MS champs because we are in this together. Next stop, March 29, 2014 full marathon. Tomoka loop, Ormond Beach Fl. 26.2 to kick MS in the butt 🙂

    Your Friend,
    Tim

  7. Nicole, it was truly a gathering of the great minds within the MS blogging community. I am sure your input has been beneficial for the patient community.

  8. Nicole! It was fabulous to meet you, your husband, and the other bloggers. It was an adventure and a productive one at that. I’ll be writing up my take soon; dang you are quick! Chat with you soon. – D

  9. I hope that Dave got a chance to talk about his HSCT experience. I believe that it is the closest thing to a cure that we have right now. I wish that I would have pursued it before I had moderate demyelination. Enjoy the sneuxpocalypse today. 🙂

  10. It was SO nice to meet you Nicole! I’m so impressed at how you and your husband face MS and deal w/ the hand you’ve been dealt! I look forward to connecting w/ you more in the future too! I hope to publish my post tonight so watch for it!

  11. Looking forward to hearing more about the conference. I’ll try to be a bit more open-minded about big-pharma, now. Sorry our Jersey weather was so cold — come back when it’s warmer and see the shore!

  12. Thank you for sharing your positive thoughts and experience with the pharma companies. I am so happy I found your page! I couldn’t agree with you more that if there is going to be a cure for MS, pharma will find it! Their pipelines are jammed with so much promise! I recently had to step down from my role as a MSLifeLines Ambassador. My role was to inspire, educate and provide that sense of hope to patients living with the many surprises MS brings. Hardest part for me was when I could no longer travel like I used to and connect with patients and their loved ones…I miss that interaction so. Hence, the courage to start a blog. I’m truly a caretaker working on my writing skills. We are all blessed with gifts, right? 🙂 Wishing you a wonderful day! Blessings ~
    Catherine

  13. I’m interested to hear what you and other MS participants said to the pharm. people when you had an opportunity speak with them.

  14. HI Nicole,

    This was insiring. I am a PT clinician who came up with Balance-Based Torso-Weighting,BBTW, and BalanceWear. Not sure you know about it. If you see the ABC link on our website with Mary that was my first patient over ten years ago. We have now proven the treatment works with MS through a NIH grant. It is not a drug.

    BBTW is therapy you wear for balance control. I would love to talk to you some day. patients are coming to see me from all over the world;especially lthose with ataxia. I teach classes to PT’s and OT’s across the country.

    Your url is not working correctly..It wouldn’t take my website.

    1. Cindy,

      I know you and BalanceWear. I follow you on Twitter. I tried to met you when you were in New Orleans in November but we never connected. I am glad you are so involved with the MS community.

  15. Thank you for attending and being a voice for us. I am anxious to hear all about what was discussed. I agree that we need to work with the drug companies so that they can work for us.

  16. Congratulations Nicole! Happy to hear that your meeting with the “big bad wolf” went well, and that so many of us MS bloggers participated! One question: What do you do with your scooter when you travel?

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