My first ACR Annual Meeting! (ACR18)

I went to the American College of Rheumatology Annual Meeting this past weekend!

It was a bit of a rush to get there. I only found out that it was happening on Friday, and when I learned it was in Chicago, I knew I couldn’t waste the opportunity to go. It was awesome to get to see the most cutting edge research in rheumatology right now and be able to hear it directly from the researchers. I also made some really cool connections with the Arthritis Foundation.

Here’s some of the coolest stuff I learned at the conference.

Research

A quick look at some conclusions I found cool from the research poster sessions (mostly spondylitis-related):

Female gender was the strongest factor associated with a larger diagnostic delay in spondyloarthritis patients (not much of a surprise for me).

Online self-referral to rheumatologists for spondyloarthritis is somewhat effective and may help reduce diagnostic delays.

Depression and anxiety don’t seem to influence treatment outcomes in ankylosing spondylitis.

There are a lot of biosimilars that are almost here! Biosimilars are kind of like a generic form of biologic drugs, and they should lower costs of using arthritis medications. They’re in the works for rheumatoid arthritis, spondyloarthritis, psoriatic arthritis, and more!

Most important takeaway: There’s a lot of exciting research going on! Things that will reduce diagnostic delay and cost of treatment are exciting for me as a patient.

Sessions

The most interesting session that I went to was about fibromyalgia in patients with rheumatoid arthritis, spondyloarthritis, and Sjogren’s syndrome, with talks given by Drs. Neil Basu, Lianne Gensler, and Frederick Vivino, respectively.

Unfortunately, it’s sometimes hard to tell if pain is from joint inflammation or fibromyalgia (especially with spondyloarthritis, which doesn’t have many objective markers). However, it’s been established that fibromyalgia rates range from 15 to 30% in these patients (1-5% is normal for the general population). 

In fact, Dr. Basu is proposing a new way of thinking of fibromyalgia, possibly as two different types. The first type, primary fibromyalgia, is the classic disease, where pain precedes cause. The second type is what Dr. Basu is studying in patients with RA: a type that seems to be caused by chronic pain, and can even be treated by getting rid of the underlying pain. Both proposed types have the same patterns on brain scans, but the patients with secondary fibromyalgia showed decreases in abnormalities on brain scans when the source of the pain was lessened (when their RA was treated).

There have been many fewer studies done on fibromyalgia and spondyloarthritis, but there were some important takeaways. Women are more likely to have coexisting spondyloarthritis and fibromyalgia, and patients with both these conditions are less likely to have the genetic marker HLA-B27 that’s associated with spondyloarthritis. Interestingly, it’s also known that women with spondyloarthritis are less likely to have HLA-B27, so is there a connection here? Research in these areas is needed. I was also really excited when Dr. Gensler stressed validating patient experiences in her treatment steps!

Most important takeaway: Anti-TNF therapy can help patients with both arthritis and fibromyalgia improve their fibromyalgia symptoms as well.

Exhibitions

The exhibitions were interesting. I got to see where some of the money I’ve sent to big pharma has gone. Did you want a giant tree in the middle of the exhibition hall? Don’t worry, Novartis has you covered. Want to feel like you’re at a street cafe, instead of inside a Chicago convention center? Lilly can do that for you, complete with food and fake plants. Would you rather relax next to a hypnotizing water display? Pfizer can help you with that, while you eat their free rolled ice cream. Not to mention the complimentary VR, golf, photos, pumpkin cobbler, all kinds of caffeine, cookies, frozen yogurt, croissants, cannolis… And if I’d wanted, I could have gotten dinner from them too, at the fancy symposia the companies held in the evenings.

I enjoyed feeling like a drug company actually cared what I thought about it for once.

I also got some first-hand experience with patronizing old guys. The worst offender started off by saying, “Now what’s a pretty young lady like you doing in a place like this?” He then proceeded to stand way too close to me while talking about how needed engineers are in medicine. Yes, questioning your audience’s right to be there and making them feel uncomfortable are definitely the best ways to sell drugs. Personal space invasion was definitely a theme.

I also got to talk to a lot of people who were very good at talking around a point. I’m sorry, I can’t talk about that, but these people over here can help you. Actually, the person you want is over there, let me walk you over. Oh, here’s the only information we can offer you. Try talking to the people who just sent you over here. And in the end, I still know nothing more about Xeljanz trials for AS.

Not everything I have to say about the exhibitions is snarky. I made some really awesome connections with staff and patient representatives from all over the country at the Arthritis Foundation. I had a really insightful conversation with a woman from California about letting yourself off the hook sometimes, but also picking yourself back up again. Hopefully these connections continue. I also learned about an awesome new forum from the Arthritis Foundation called Live Yes! It’s a great, growing community of people with all kinds of arthritis.

Most important takeaway: I know where all my (insurance company’s) money is going when I pay $5000 a month for medication.

After

I spent every minute I could at the conference over the last few days, and I don’t regret it a bit. I only wish I had known about it in advance, because I missed a lot of cool sessions because of work. I hope to be able to go again next year and take full advantage of as many sessions as possible, although since I won’t be a student, I’m not sure how affordable it will be.

It was really awesome that the ACR has started paying more attention to patients. For the first time, they accepted patient posters, which is an exciting step.

ACR18 really reignited my passion for patient advocacy in research. There are so many important aspects of diseases, especially spondyloarthritis, that need to be looked into. In fact, next semester I plan to start some research of my own into an area that I’ve noticed needs some change.

A medical conference isn’t for everybody, but it was really exciting for me!

-Bri

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