by Dana Symons
Seven years ago, I had my first volunteer experience with the Rheumatoid Patient Foundation. It was also my first time attending the American College of Rheumatology Annual Meeting, which was held that year in Chicago. It was an experience that changed my life. It was eye-opening and exciting as I saw so many people from multiple disciplines coming together with the goal of helping people with rheumatic diseases. It was also where I got to meet some long-time internet friends face-to-face, including RPF Founder, Kelly Young, several other patients, and some rheumatologists that I knew from around the globe. The experience gave me hope that by working together, we really can improve the lives of people with rheumatoid disease and work toward a cure.
This year’s ACR Annual Meeting brought us back to Chicago – and me to my sixth time attending this annual conference with RPF. Looking back, it’s fun to see the progress that has been made since that trip seven years ago. Back then, we were just about the only patients to be found at the conference. Over the years, that has begun to change and the ACR has been more open to involving patients in the conference, even having a special section of patient poster presentations in the poster hall, and having more conversations and sessions that are patient-centric.
There seemed to be a general attitude shift, where a number of years ago we received push back from some people who seemed to think that we had “arrived” at the pinnacle of what was needed in rheumatoid disease treatment and that patients were doing just fine. Whereas this year, we received no push back, and instead were embraced with open arms by other attendees (doctors, researchers, biotech and pharmaceutical employees) who see the need for more and better resources for people with RD and for heightened education and awareness of the true nature of this systemic disease. We offered free copies of the book, Rheumatoid Arthritis Unmasked, and educational “Treat to Target” posters for doctors’ exam rooms. We had an overwhelming response, with requests for resources from doctors in nine different countries!
Other things have changed, too. New drugs have come on the market – including new oral medications, auto-injector pens for methotrexate, and biosimilars. Biosimilars have been a huge topic of conversation for the last few years. A biosimilar is kind of like a generic version of a drug, except that since these medicines are made biologically rather than chemically, they are not exactly the same as the branded drugs. They offer a potential cost savings and theoretically similar response rates as their branded counterparts – though there’s some debate about whether the branded and biosimilar drugs would work the same way in a particular individual. There are also new drugs still in the pipeline that offer future hope to people who have not responded to current treatments on the market.
On the whole, this year was a very positive experience, and it feels like we have come full circle back to Chicago, and back to a place of hope and possibilities. We set things in motion in 2011 and have made some strong headway toward our goals of patient involvement, recognition of RD as not just arthritis, and support for our educational and awareness campaigns. There is lots of work yet to do on all fronts, but it seems that in many ways, things are headed in the right direction. Let’s fight together to keep this momentum going until we reach our final vision: a world where no one suffers from rheumatoid disease.