Each year, the American College of Rheumatology (ACR) hosts a conference for researchers to present their work and for rheumatology professionals and organizations to network. The event typically draws more than 15,000 attendees from around the world. Before COVID-19, ACR’s Annual Meetings alternated between the East Coast and West Coast of the United States. But like so many gatherings in 2020, this year’s event was completely virtual. According to the ACR, this year’s meeting garnered 16,500 attendees from 111 countries. I was one of them – thanks to the support of SAA.
Although I have been to multiple ACR Annual Meetings since my axial spondyloarthritis (axSpA) diagnosis in 2013, 2020 was by far my favorite because I attended from the comfort of home. Virtual attendance allowed me to absorb more information without taxing my body nearly as much.
I live-tweeted during the conference; you can read my tweets by searching Twitter for the hashtag: #HillReportsACR20. There were dozens of tweets, so I will highlight some key takeaways on three topics below:
- Diversity & identity
- Spondyloarthritis nomenclature
- Diversity & identity
As an impoverished, disabled, and nonbinary (transgender) person, my awareness of my identities script my interactions with providers and medical staff. If I feel safe to be wholly myself with a provider, I am more likely to trust them with my healthcare.
Vulnerable and marginalized communities have historically faced significant disparities in healthcare. It was a relief to see multiple sessions at ACR ‘20 covering how race, gender, sexuality & poverty intersect with medical care. I attended these sessions because of my personal connection to the topic and my desire to close the health equity gap for Black, indigenous, and other people of color (BIPOC) who remain largely underserved in medical contexts, including the field of rheumatology.
Health outcomes (i.e., reduced symptoms, greater function, mental health) are impacted by a medical provider’s intentionality in treating patients with an awareness of how their race, sexuality, gender, or other identity group impacts their approach to healthcare.
Dr. Jillian Rose, PhD, MPH, LMSW highlighted in multiple sessions (paraphrased) that implicit biases develop over our lifetimes, which affects how people approach healthcare, and how doctors understand patients — culture affects people’s views of, decisions about, and thoughts of medical information. Other speakers also stressed the importance of doctors and providers being intentional about cultural competence because it impacts healthcare outcomes. I think this is best summed up with a quote from Marc Nivet, PhD, MS, MBA: “We need to move from ‘Diversity is good & important’ (and looks good) to: ‘We cannot meet our mission if we are not diverse, inclusive, and equitable. We need to leverage diversity in patient care.”
The 2020 Annual Meeting would not be complete without the topic on everyone’s mind: COVID-19.
It has been about a year since COVID-19 made its first appearance. Information is still new and constantly changing. However, vaccines are expected to start being distributed in mid-December 2020. Many sessions focused on this news, while other sessions featured reports from members of a group of rheumatology professionals who have been studying the intersection of COVID-19 and rheumatology. They reported preliminary, but not necessarily peer-reviewed, findings. You can find more information on these findings here: www.COVID-RHEUM.org).
As I watched presentations, I noticed that spondyloarthritis patients were not highly represented in COVID-19 infection data compared to other rheumatic conditions; I found this fascinating, especially because more than 3.2 million people in the USA live with spondyloarthritis, which is more than many rheumatic conditions.
Also notably reported were what researchers believe to be the main risk factors for poor COVID-19 outcomes in rheumatic populations: people older than 65, people with comorbidities, and patients using glucocorticoids. However, it was reported that those using biological or other DMARD treatments faced reduced odds of hospitalization or poor outcomes from COVID-19.
Several researchers recommended the following for pre-emptively improving outcomes for COVID-19 rheumatology patients: control disease activity, minimize steroids, keep collecting data, and do better by BIPOC communities (which are disproportionately impacted).
- Spondyloarthritis nomenclature
Right in the middle of the conference I joined a casual working group that discussed the words we use for spondyloarthritis. When I was diagnosed in 2013, I was diagnosed with ankylosing spondylitis (AS). Nearly eight years later, many countries around the world are years into calling the same disease ‘axial spondyloarthritis.’ There continues to be sharp divides in the rheumatology community about how exactly to refer to this spondyloarthritis family of diseases, as well as conflict about how quickly nomenclature is changing.
As a patient, I attended this work group with frustration as I watched rheumatologists have a conversation about nomenclature without including the patient voice and without acknowledging that we are only just now beginning to transition into using language like ‘axial spondyloarthritis’ instead of ankylosing spondylitis.
I discovered I was not alone in my frustration, as shortly after the conversation I was invited to chat with a few other SpA patients who had been in the session, too. We were all on the same page: the patient voice needs to be included in all such conversations about the naming – or renaming – of our own diseases.
Our agreement on this issue highlights the fact that a patient-centered approach to healthcare is highly recommended by leading experts: the patient experience is vital to good outcomes. Which leads me to shift this article to focus on who is reading it: you! Please let me know what you found interesting about my report, and if you are comfortable, share how you are doing during COVID-19.
Until next time,