Reflections On The 1st Rheumatoid Arthritis Blogger Summit*

Last week, I had the privilege of attending the 1^st Rheumatoid Arthritis Blogger Summit held by Pfizer in New York. 

When I got the invite, I was super excited and surprised to be included.  It was really an honor!  And I’m not going to lie, being treated like a queen for a day was nice, too!    

I was a bit worried about a hidden agenda, but the day opened by us being told that Pfizer was not going to discuss any of their medications.  Honestly, this impressed me.  And it put me at ease that I wouldn’t feel like I had to write about a product that I haven’t been on, because in general, I usually don’t really discuss medications that I, myself, haven’t been on, unless there is news that I feel is really important for my readers.

We did learn, however, about an unbranded campaign that Pfizer is rolling out, Rethink RA.  Unbranded means that the campaign is not connected specifically to any drugs produced by Pfizer.  In other words, this program is designed to show Pfizer’s commitment to the RA community, in general, and not just patients that are on their medications.    

You can check out the website, http://www.rethinkra.com/.  And the (free) kit that you can order has a lot of handy tools in it for helping you start or continue a conversation with your rheumatologist.  Hopefully this campaign will continue to evolve!  

Rethink RA Kit

 I think it is hugely important for there to be an open line of communication between patients and pharmaceutical companies.  I think a lot of times it can seem like the pharmaceutical companies are untouchable, and there are also a lot of people that tend to stand between the patient and pharmaceutical companies.  It was nice to be able to share my opinions and experiences as an RA patient directly, and I hope that Pfizer was receptive to that.

We ate lunch at Haven’s Kitchen, with a meal prepared by Seamus Mullen.  Seamus is a chef – owner of Tertulia restaurant in New York and author of the cookbook, “Seamus Mullen’s Hero Food: How Cooking with Delicious Things Can Make Us Feel Better” – and he has RA.  He taught us some of his tricks in the kitchen that he uses to make cooking more RA-friendly, and made us a delicious meal of cucumber gazpacho, raw kale salad, curried chicken (tofu for me) and ginger rice, and almond cake.  Seamus is going to serve as the spokesperson for the Rethink RA campaign.  The meal was delicious, although it put us all into a bit of a food coma for our afternoon sessions with Pfizer. 

Fellow attendees were Britt Johnson (The Hurt Blogger), Angela Lundberg (Inflamed: Living with Rheumatoid Arthritis), Marianna Paulson (A Rheumful of Tips), Shannon Ragland (representing the Rheumatoid Patient Foundation), Dana Symons (at the Water’s Edge), and also included two of my fellow HealthCentral RA bloggers, Lisa Emrich (Brass and Ivory: Life with MS & RA) and Cathy Kramer (The Life and Adventures of Cateepoo).

Our program for the day

I have to say, it was comforting to be around others who were totally stiff, standing up at the end of lunch and were also battling RA and the humidity.  By the end of the day, my lupus was having a field day with all the fluorescent lighting.  I had a headache and went back to the hotel to lie down, but was able to rally for dinner with a few of the bloggers.  They checked out Time Square afterwards – I went back to my room to prepare for my 9 a.m. flight - since I’m moving to New York in a few months, anyway.

The highlight of the day was getting to spend time with my fellow bloggers, because it is so rare to be in the company of people who get it.  That was really awesome!  It was nice to share our stories and not have to provide cliffs notes about everything.  I’m grateful for the connections I made with the other bloggers.  So thanks to Pfizer for bringing us together. 

I hate to admit that I am still recovering, but flying to New York on Thursday night, having the summit and then hanging out with the other bloggers all day Friday, and flying back to Michigan Saturday morning was a bit much for me, but totally worth it!  

In some ways, this experience made me realize the intricacies of this disease.  The need for rest, healthy food, exercise, and sticking to your medication regimen.  It also made me realize that communication needs to occur on various fronts – with you and your doctor, with you and your friends and family, with you and your community of support, and with you and others involved in the illness experience, such as the pharmaceutical companies.  This experience also helped to underscore the complicated nature of the healthcare system, and what pharmaceutical companies can and cannot do.

I hope to be included in more things like this in the future!  What a great opportunity, interacting with a pharmaceutical company, and getting to meet other RA bloggers!

*In the effort of full disclosure, my travel and lodging were paid for by Pfizer/TwistMedia.  However, it was my choice to write about the experience.