What’s the American College of Rheumatology?
The American College of Rheumatology (ACR) is an organization of doctors wanting to learn the latest research in rheumatology or who contribute to that research. The better rheumatologists around the world attend the ACR’s annual Scientific Meeting or are members of ACR. (Because of expense and busy practice, many members attend the meeting on alternate years or once every few years instead of yearly.)
I was extremely grateful to attend this year’s session. I especially thank the American College of Rheumatology for granting two press passes (one for Katie Beth) and Genentech (Actemra) whose sponsorship on the website helped me to financially manage the expenses involved with the trip to Atlanta and, finally, readers who made personal contributions. Attending the ACR meeting was a turning point for me as a health advocate and for our fledgling online rheumatology community. As I mentioned in my little video from Atlanta, I’ll probably be writing about ACR research over the next few months.
Where do I begin? Let’s look at 3 things I learned at ACR 2010:
1) CONTEXT: Rheumatology studies are presented in a larger context
Seeing a study presented by the doctors who created it is not the same as reading the abstract. The room is full of doctors and press with notepads and blackberries. People are snapping photos of the diagrams in the slide presentations. A tight schedule is kept. When time is up, peers – other doctors and researchers – line up to ask questions about the methods or conclusions. Then, everyone rushes out of the room to hear another study presented.
When we sit at home and read a study, we miss most of the context. Some context could be gained by reading any editorials that come along – if we’d have time to look for them. We do our best to determine as much as possible about the subjects in the study. Also, we might read through any studies referenced below the study – when we can even get access to the whole study so that the references are viewable.
Sometimes, I think we might be tempted to read a study and think of it as a final word on a topic. As we’ve seen with some things we’ve discussed in the past, there are studies with conflicting conclusions or results that differ. So, we need to view the studies in context of other studies which come before and after it, and if possible in light of the reaction that the rheumatology community has to the results.
2) CARE: There’s hope because of people who care about rheumatology patients
I’ve always said that there are good doctors who care about what happens to patients. I have even noticed some who seem like they’re on the right track or whose work has made a difference to patients’ lives. However, sitting all day listening to doctors discuss ways to reduce our suffering or investigate ways to extend our lives is heartrending.
Last week, I also saw presentations from various companies involved with products that rheumatology patients need, especially medical treatments. I was even able to hear from some scientists who work on trying to create new treatments for rheumatological diseases like RA, JRA, PsA, and AS. I’m convinced that those I met do care about us as patients and have every hope of helping us to find better treatments and one day, cures.
I also met with the Executive Director of the American College of Rheumatology Research and Education Foundation (REF). I’ll be sharing much more about their great work soon, but be assured that they care about patients and want us to have the best treatments possible and to have our needs addressed.
3) COMPLICATED: Rheumatology is more complex than we imagine
We’ve talked before about how complicated Rheumatoid Arthritis is and the impact that has on treatment and research. I’ve had that fact emphasized to me in the past and I’ve tried to bring that to you. How much more this was accentuated by my experience at ACR. I might see a complicated drawing about immune function and marvel at how it could be understood. And the next slide would reveal a wider view, showing that the first one was only a small part of a larger process. All of that is of course only a sliver of the entire process of auto-immunity.
What does this insight bring us? Well, a healthy confidence to laugh at those who try to shame you out of your treatment in favor of juice, for one thing! For another thing, we can rest assured that no one is hiding the cure. Many people are digging hard for the nuggets of gold that may one day lead to the main vein. Finding a cure for RA is more complicated than finding a cure for certain cancers, for example.
This complexity is a bad thing, yes. However, knowing that fact also means that there may always be one more different treatment option to try. I’ll give you a small example. In a discussion of the ways that methotrexate can be used, it was suggested that certain patients be dosed in split doses. So, for example, patients take half of their methotrexate one evening and the other half the next morning. This helped some patients to overcome liver issues and keep using it. I talked with doctors who had never heard of this approach – there is always one more adjustment or another alternative.
- Video: Thoughts from American College of Rheumatology (ACR) 2010
- The Problem with Rheumatoid Arthritis Information: Why is RA so hard to study and cure?
- How well do Biologic medications help Rheumatoid Arthritis?
- Is there a cure for Rheumatoid Arthritis?