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Charis Hill, AS Advocate
Charis Hill is an advocate for the spondyloarthritis community. Charis has been instrumental in helping to translate the spondyloarthritis treatment guidelines for patients; designing and conducting patient-centered rheumatological research; forming international criteria for disease treatment outcomes; and is consistently involved in nationwide/worldwide advocacy, awareness, and legislative campaigns to improve spondylitis education, funding, and access to treatment.

Monday, January 6, 2020

My Time at the American College of Rheumatology Annual Meeting as a Spondyloarthritis (SpA) Patient

 

In 2014, I attended my first American College of Rheumatology (ACR) Annual Meeting, two years after being diagnosed with Ankylosing Spondylitis (AS). I didn’t know what to expect, just like you don’t know what to expect while living with AS, but I also didn’t expect what I felt as soon as I arrived. Here I was, a patient, dropped in the middle of a huge medical conference. Before, I had not even known the American College of Rheumatology existed, or that there were so many rheumatology professionals. For the first time since my diagnosis, I felt hope.

 

The Annual Meeting (often referred to simply as “ACR”) is a week-long gathering of 15,000+ attendees including researchers, rheumatologists, pharmaceutical companies, patient groups, and medical groups - people representing more than 100 countries. Research is presented; networking events connect professionals; industry seminar panels offer learning opportunities; and a massive exhibit hall features informational booths, displays and a seemingly endless supply of free materials, ink pens, and more. Very few patients attend ACR. In recent years, however, the organization has added a patient perspectives poster session. Some patient advocates attend as bloggers to disseminate information to their own disease communities or attend with nonprofits, as I did with the Spondylitis Association of America. This is an important shift for the Spondyloarthritis patient community for several reasons.

From what I recall of my first experience back in 2014, not much of the research at ACR featured forms of spondyloarthritis. As a SpA patient attending the meeting, I remember perusing the list of abstracts and feeling disappointed. I found myself having to listen to research geared toward similar diseases and extract the relevant information for my condition. In the years since then, I’ve witnessed spondyloarthritis, especially ankylosing spondylitis, become more widely discussed by researchers. In 2019, there were numerous abstracts - even several hours-long sessions - dedicated to forms of spondyloarthritis, representing an incredible leap within five years. It was encouraging to see my disease given more focus.

How far we've come

Beyond the growth in research (and because of past research), several changes have impacted the SpA community. Biosimilars, IL-17 biologics, and a biologic for nonradiographic axial spondyloarthritis (nr-axSpa) have all been approved by the FDA for spondyloarthritis treatment. New treatment guidelines have been published for axial spondyloarthritis, including this condensed and patient-friendly version created by the Spondylitis Association of America (download the guidelines from SAA). Awareness is growing as celebrities are being more vocal about living with the disease. SpA patients are making waves with their own advocacy projects. And rheumatologists that specialize in spondylitis are being given bigger platforms to share their work. There are even ads on the radio and on social media about treatments for AS! 

What's still missing

While our community has made strides in the nearly 7 years since my diagnosis, we still have a long way to go.

SpA does not receive as much research funding on a federal level compared to similar disease groups (even those that impact fewer people). SAA is responsible for funding a lot of new research privately. Many people, including many rheumatologists, still aren't aware that Spondyloarthritis impacts more Americans than MS, ALS, and RA combined! Some rheumatologists still refuse to diagnose women, and many rely solely on an HLA-B27 test to diagnose patients even though many people who have SpA don't have the gene, especially black women. The delay of diagnosis remains an average of 7-10 years.

What it was like to experience presentations

2019 marks my fourth ACR Annual Meeting in five years. My most memorable moments this year were entering large conference rooms filled with rheumatologists, researchers and other medical practitioners and feeling like my disease finally mattered. On one occasion, a session entitled "Spondyloarthritis Including Psoriatic Arthritis - Clinical I: Imaging in Axial Spondyloarthritis & Psoriatic Arthritis" featured six different research presentations in 90 minutes, and I counted nearly 400 attendees waiting to listen! I can’t begin to put into words the heartwarming feeling that came over me from being in a room full of professionals and learning about my disease. It’s still leaves me speechless.

To be in these presentations as a patient and hearing research presented as clinical statistical data is a special experience. I have a strong emotional response to the information because I apply the information to my own life with SpA. But for some doctors in the room, this information might just be educational. They may care about it because it's their job to know this information in order to treat patients. It's my job to learn this information because it's my life.

Research presentations rarely focus on emotions and the emotional experiences of patients, yet it is vital to our care as people who live with chronic diseases. I appreciated being in the room with other professionals because it meant I could be a face of the disease being discussed on the screen.

Information gathered

There were many important topics discussed at ACR this year. Below are just a few that I want to pass along to the SpA community:

  • AS and axSpA are not interchangeable. AS is a form of axSpA, just as nr-axSpA is another form of axSpA. We're years behind other countries in implementing this shift.
  • New disease treatment guidelines are out for the treatment of Ankylosing Spondylitis and Axial Spondyloarthritis. Here's where you can find the patient version: https://www.spondylitis.org/Spondyloarthritis-Treatment-Guidelines-Survey
  • Several presentations highlighted the need to shorten diagnostic delays and start treatment sooner. The sooner the treatment begins, the better the health outcomes.
  • Currently, only one biologic has been approved for the treatment of nr-AxSpA. It's harder to diagnose nonradiographic AxSpA because of the lack of damage to the joints
  • Nr-AxSpA symptoms are felt as severely as radiographic AxSpA and earlier diagnosis is crucial to begin treatment sooner
  • Gut microbiome: the truth is, we don't know yet what mechanism this plays in spondyloarthritis, but researchers like Dr. Rosenbaum are leading this work. Notably, from what I’ve read, this research currently only focuses on populations that are HLA-B27+
  • Rheumatologists and radiologists don't necessarily agree on diagnosis based on imaging. They read imaging differently. This can impact whether a patient is diagnosed early enough.
  • Low-dose CT scans may help in earlier diagnosis of SpA
  • Rheumatologists will be getting a raise, while other specialties will be getting pay cuts
  • Current and ongoing research involves the gut microbiome, gender, specialized imaging tools, mental health, and the need for earlier diagnosis

What did I enjoy?

I’ve come to love using my wheelchair for events like this, and I rolled around the Georgia World Congress Center in Atlanta, feeling at home and loving the chance to speak the language of rheumatology: "cytokines, microbiome, ASAS, BASDAI, BASFI, fatty metaplasia, syndesmophytes, monoclonal antibody, immune-mediated, auto-antibody."

I attended sessions, asked publishing groups and medical hospitals to engage more with the SpA community, and educated a lot of people in passing about how more people in the US live with SpA than RA. Yes, even medical professionals don't always know this, but are you surprised?

My favorite moments included conversations with Dr. Kahn, being with SAA staff and other friends I've known online but rarely see in person, tweeting a whole lot, networking with colleagues in the rheumatology community, and posing for selfies with fans. 

Summarized:

In short, spondyloarthritis research, like any disease group, is a long game. We're making progress and we can always use more funding. We're scratching at the surface of many hopeful discoveries but aren't quite there with direct answers yet. Research in areas that haven't received a lot of attention means grasping at straws and coming up with theories that can drive further exploration. The best thing, in my opinion, is that awareness is growing - rapidly - and we have a lot of good rheumatologists on our side, like Dr. Kahn, Dr. Rosenbaum, Dr. Deodhar, Dr. Gensler, and Dr. Norton just to name several.

Speaking of awareness, be sure you're following the Spondylitis Association of America for up to date information and news. I'm especially excited about a project to be unveiled for May 2020.

 

 

 

 

 

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