by Dana Symons
I attended the American College of Rheumatology (ACR) Annual Meeting for the fifth time this year. This is special, because it meant that I got a neat little ribbon for the bottom of my name badge. It’s also special because it means that I have had this amazing opportunity five times — to convene with rheumatology experts from around the globe to hear about the latest research, the newest treatments and clinical practices.
I first attended the ACR Annual Meeting in Chicago in 2011, as a part of the first exhibit booth put on by the Rheumatoid Patient Foundation. I cannot even begin to describe the feeling I had the first time I met with doctors and researchers and industry professionals and other rheumatoid patients face to face as we discussed our mutual goals of earlier diagnosis, improved awareness, better treatments (even a cure!) and enhanced patient care. As I stood with doctors from Germany, India, Ireland and Columbia who I had known only from Twitter, it was surreal. It was also the first time I got to meet our very own RA Warrior, Kelly Young, in person. Since then, I have attended the ACR events in 2012, 2013, 2016 and 2017 — each one making a profound impact on my view of rheumatoid disease (RD) and what changes need to happen to improve the lives of patients.
Over the past couple of years at ACR, I seemed to notice a trend. There are tons of scientific sessions discussing a multitude of topics that affect those practicing in the field of rheumatology. However, it seemed that there were fewer talks being given specifically on rheumatoid arthritis. Perhaps that’s just my perception and I’m wrong — I did not make any attempt to categorize and count the sessions over multiple years! Perhaps it’s because we had several years in a row with big news — new drugs coming to market, new biomarkers being discovered, new recommended guidelines from the ACR, including diagnostic criteria and Treat to Target initiatives — followed by years with less news. Sure, there are biosimilars and a few new drugs in the works, but nothing seems completely novel. There was certainly still a plethora of research, but, still, the emphasis and enthusiasm for progress with this disease did not seem to be there. Perhaps everyone is just waiting for the “next big thing.” For whatever reason, to me there seems to be a sort of plateau. And plateaus are dangerous.
It’s the serious weight loss regime that can’t get you past the first five pounds. It’s the career progress that suddenly halts at a dead end job. It’s the relationship that blossoms, and then grows stale. And, speaking from experience, sometimes, it’s as far as getting 2/3 up the mountain you wanted to climb, past the miles of steep winding switchbacks — into the lower basin. While pretty, with its streams and waterfalls, and tempting with its flat path for easy walking — if you stop at this plateau and don’t keep going, you will never reach the pinnacle – you will stay on the plateau of complacency and never know that which is truly spectacular.
A plateau means you’ve made progress, but you haven’t reached the end.
There has been significant progress in treating RA / RD in the past decade or two. Biologic medications have been a game changer for many. New treatments targeting different pathways, new biomarkers indicating disease activity and helping diagnostic and prognostic efforts and a shift toward more patient-centric care are all very positive things. However, there remains a large portion of people with rheumatoid disease (PRD) that is unresponsive to any available treatment, and the mortality gap still exists. Just because we have made progress, it doesn’t mean it’s time to stop and call things “good enough.” Just because some patients are doing well who would not have been 20-30 years ago, doesn’t mean we ignore the patients who still are not doing well.
There is a pervasive sense that, on average PRD are doing well, and we can all put our feet up and relax a bit. The problem with that thinking is that there is no “average” patient. The statistical mean of a group of people may be helpful for exhibiting overarching trends, but is not helpful to an individual. It does not address the concerns of a single person, who may, in fact, not be doing well. We still have a long ways to go in rheumatology, with yet a poor understanding of how the disease even develops, functions and evolves. Until we are able to understand this disease better, to screen and diagnose early, to universally recognize and treat the systemic nature of RD — we will never be close to being done. I say “we” because I mean all of us: patients, caregivers, doctors, nurses, researchers, pharmaceutical and biotech companies…we all play a role in advocating for better research funding and proper attention to this cruel disease. I am here to remind you that we are not done. Now is not the time to give up. Now is not the time to plateau. Now is the time to build upon the momentum that we have and continue to fight until we live in a world where no one suffers from rheumatoid disease.
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