COVID-19, Vaccinations, Shared-Decision Making, & Rheumy Communications
Part of our Go with Us to Conferences - EULAR2021 Debriefs and Rheumy RoundsⓇ special series
AiArthritis Voices 360 Full Episode 63
Air Date: July 4, 2021
For this episode, join Tiffany, Deb.... AND Al and Jeff (Dr. Al Kim and Dr. Jeff Sparks) *as they continue our organizations patient-led "Go with Us to Conferences" - EULAR debriefs.
In this section of the debrief, we discuss the latest updates on COVID-19 vaccinations and research. Jeff received an abstract award at the conference for his research on COVID-19 disease outcomes for patients taking immunosuppressant medications and Al is doing research, led by Washington University, tracking vaccine response in autoimmune patients. Finally, we talk a lot about shared decision making, in particular when speaking to rheumies about vaccinations. The new topics are antibodies, boosters, and next steps. Also, a special thanks to Janssen Pharmaceuticals for investing in our initiative to prepare patients to engage in shared decision making about COVID-19 and vaccines! More information coming soon how to get involved!
*Actually, Al and Jeff zoom-bombed our patient-led debrief, the first time non-patient stakeholders were invited to the table for this series. But it was about rheumy communication, so why not?!
LISTEN TO THE EPISODE THEN BE SURE TO TAKE A SEAT AT THE TABLE BY JOINING THE CONVERSATION!
(Scroll down the page to learn how!)
Today's episode was live-streamed on Youtube. Click the button below to watch the full debrief with Tiffany, Deb, Dr. Kim, Dr. Sparks and also including Patrice Johnson and Katie Simons. The zoom bomb occurs around minute marker 20.
Pull up your seat at the table
Now it's YOUR TURN to join the conversation!
What do you think about this episode?
We want to know what you think! By continuing the conversation with your opinions and perspectives - we all get a better understanding of the problems facing our community. Better yet, through these conversations we can start working and developing solutions.
We mean it when say 360. Not only do we want your input anytime and anywhere, but we also are eager to see where the conversation will take us. So please, "pull up a seat at the table" and let's start talking!
Email us at podcast@aiarthritis.org, message us on social media (find us by searching for @IFAiArthritis)
Continue the conversation in our own AiArthritis Voices 360 Talk Show Group!
Pull up a seat and join the conversation on the topic from today and past episodes. You may even get an opportunity to talk directly with the co-hosts and any episode guests!
The
AiArthritis Voices Program
Our AiArthritis Voices 360 Talk Show is just a piece of larger program - the AiArthritis Voices Program.
AiArthritis Voices is our program where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives.
If you want to get more involved, and see more of the opportunities we have for you (and all stakeholders) please check out the
AiArthritis Voices Program. Unite with others around the world to talk, learn, and connect.
Patient Voices and All Other Stakeholders - Join our
AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted!
If you are a patient, a parent of a juvenile patient, or any other stakeholder (doctor, nurse, researcher, industry representative, or other health services person) - are you ready to join the conversation? It's your turn to pull up a seat. Join our new AiArthritis Voices program, where people living with AiArthritis diseases and other stakeholders who we need 'at the table' to solve problems that impact education, advocacy, and research sign up to have a voice in our initiatives. By signing up, you’ll get notified of opportunities to be more involved with this show - including submitting post-episode comments and gaining insider information on future show topics. Patients and all other stakeholders are encouraged to join so we can match you with opportunities to pull up a seat and TOGETHER - as equals - solve the problems of today and tomorrow.
AiArthritis Voices 360 is produced by the International Foundation for Autoimmune and Autoinflammatory Arthritis. Visit us on the web at www.aiarthritis.org/talkshow. Find us on Twitter, Instagram, TikTok, or Facebook (@IFAiArthritis) or email us (podcast@aiarthritis.org).
Be sure to check out our top-rated show on Feedspot!
Show Notes:
01:37 - Tiffany welcomes listeners.
03:12 - Tiffany is joined today by recurring co-host Deb and rheumatologists Dr Al Kim and Dr Jeff Sparks.
05:16 - Today’s episode will focus on COVID-19 vaccinations and new research on COVID-19, as well as the launch of a new AiArthritis initiative to promote shared decision making regarding COVID-19 vaccinations.
07:47 - Thank you to Johnson & Johnson for funding our work on this important initiative.
09:01 - Jeff explains his award-winning research abstract presented at EULAR 2021.
10:33 - Jeff’s research found that COVID-19 patients who were taking Rituximab and JAK inhibitors prior to diagnosis had more severe disease courses compared to patients who were not treated with these drugs or were treated with different DMARD or Biologics.
10:58 - This is especially interesting because some trials have shown that JAK inhibitors can be effective in treating COVID-19 in patients who were not taking immunosuppressant medications prior to diagnosis.
13:19 - COVID-19 is a unique disease in that it creates a second stage inflammatory state where immunosuppressants can be helpful in preventing death and facilitating recovery.
13:48 - Research from Yale shows that a patient’s ability to produce antibodies effectively in the early stage of the disease is crucial to preventing the more serious form of the disease, so patients taking immunosuppressants have an increased risk of developing severe COVID even though these drugs are helpful in treating the disease in the second stage.
15:32 - AiArthritis (in conjunction with EULAR PARE) just launched the Pathway of Patient Engagement in Rheumatology Research, which features Jeff’s research abstract.
16:32 - What should patients be preparing for before their rheumatology appointments as new information about COVID-19 and vaccines continues to develop?
17:00 - Al still thinks that testing patients for antibodies doesn’t make sense because antibody status is not actionable information from the rheumatologist’s perspective.
17:47 - Prophylactic monoclonal antibodies are substantially restricted because they have only been approved under an Emergency Use Authorization by the FDA, so your rheumatologist cannot just prescribe them for you because your vaccine did not yield COVID-19 antibodies.
18:05 - Booster shots for COVID-19 have also not been approved by the FDA yet, so some patients are lying about their vaccination status to get a second set of shots. Please note that neither AiArthritis nor the rheumatologists appearing in this episode recommend this course of action.
22:21 - Rituximab is generally considered to be a very safe drug, but it elevates risk for patients with COVID-19.
23:06 - This raises questions for doctors about whether they should continue prescribing it in light of the risk that patients may be facing from COVID-19.
23:15 - It will be very important for patients to engage in shared decision making with regard to drugs that elevate COVID-19 risks.
24:11 - Special thanks to Janssen Pharmaceuticals for their support in funding our work on promoting shared decision and helping patients with regard to COVID-19 vaccination decisions.
26:36 - To watch the entirety of this conversation, check out our EULAR debrief video #6 on our YouTube Channel.
26:55 - If you are interested in going to conferences with us, find out how you could attend a conference with us at aiarthritis.org/conferences.
27:11 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow.
27:17 - Please consider donating at aiarthritis.org because we need your support to keep this show and all of our initiatives moving forward.
27:54 - Tiffany thanks listeners for their support.
Links discussed in this debrief:
2021 EULAR recommendations for the implementation of self-management strategies in patients with inflammatory arthritis - https://ard.bmj.com/content/early/2021/06/13/annrheumdis-2021-220249
Exploring intentional medication non-adherence in patients with systemic lupus erythematosus: the role of physician-patient interactions - https://pubmed.ncbi.nlm.nih.gov/33604502/
Associations of baseline use of biologic or targeted synthetic DMARDs with COVID-19 severity in rheumatoid arthritis: Results from the COVID-19 Global Rheumatology Alliance physician registry - https://pubmed.ncbi.nlm.nih.gov/34049860/
Glucocorticoids and B Cell Depleting Agents Substantially Impair
Immunogenicity of mRNA Vaccines to SARS-CoV-2 - https://www.medrxiv.org/content/10.1101/2021.04.05.21254656v2.full.pdf
Learn more about the Pathway of Patient Engagement in Rheumatology Research:
www.rheumactioncouncil.org/pathway
Your Co-Hosts & Guests: Who is at the table this episode?
Tiffany Westrich-Robertson
Tiffany is the CEO at International Foundation for AiArthritis and uses her professional expertise in mind-mapping and problem solving to help others, like her, who live with AiArthritis diseases work in unison to identify and solve unresolved community issues. For the last several years, she has continued her education in research, including becoming a professional focus group moderator, and translated this experience at our organization to develop award-winning, innovative projects that are taking patient engagement to next levels.
Tiffany has served on several advisory boards, including those to advance patient voices in policy, clinical trials, and precision medicine. In addition to reviewing grants at PCORI and for the Department of Defense, she was the sole patient grant reviewer for the National Institute of Arthritis and Musculoskeletal and Skin diseases from 2015-2018. She currently participates as a Patient Research Partner for OMERACT (Outcome Measures in Rheumatology), co-leads our organizations' international effort to advance patient voices in rheumatology research (the ACTion Council) and has dedicated her professional career to developing other patients to utilize their voices to impact the future of millions.
Deb Constien
Deb has been living with Rheumatoid Arthritis for three decades and while she has experienced disability from it, she never lets her disease dominate how powerful her voice can be.
She has been a key Representative (high level volunteer) for our organization for several years and often takes a leadership role in many programs and mission initiatives, including attending meetings as the voice of the organization. She is also a Platinum Ambassador at the Arthritis Foundation, as well as various other nonprofits, and has formerly and currently used her voice as a Patient Research Partner (Wisconsin Research and Education Network (WREN), OMERACT, Arthritis Power through CreakyJoints and more). She has represented her state of Wisconsin on Capitol Hill and at a local multiples times, and most recently was a key player in helping to pass step therapy legislation in her state.
Rheumatologist Professional: Dr. Kim is an Assistant Professor of Medicine and of Pathology & Immunology at Washington University School of Medicine. He also founded and directs the Washington University Lupus Clinic. Dr. Kim’s research group is focused on addressing the unmet needs of human systemic lupus erythematosus (SLE), including understanding and leveraging the biomarker potential of complement activation products, testing novel noninvasive imaging platforms such as photo acoustics to detect lupus nephritis, understanding the relationship between sleep quality and lupus activity, and restoring eroded social support in patients with SLE.
Twitter: @alhkim
Dr. Jeff Sparks
Jeff Sparks is an Assistant Professor of Medicine and clinical researcher at Brigham and Women's Hospital in Boston, Massachusetts. He is deeply committed to determining the risk factors for rheumatoid arthritis-associated interstitial lung disease (RA-ILD) development and progression to ultimately create prevention strategies to lower risk for RA-ILD onset and improve patient outcomes. A leader in the field, Dr. Sparks performs original epidemiologic and patient-oriented studies that are presented at international conferences and published in the leading journals in the field. He has served in leadership roles in the American College of Rheumatology (ACR) related to Rheumatoid Arthritis management guidelines, chair of the Early Career Investigator subcommittee, and PI of the nationwide CARMA (Creating Adult Rheumatology Mentorship in Academia) mentorship program.
Website:
Dr. Jeff Sparks, Harvard University Twitter: @jeffsparks
Love the show? Help us make sure we stay on the air by making a donation.
Your contribution helps us continue the work we do every day to improve the lives of millions worldwide.
Sign up for our newsletters
International Foundation for AiArthritis
6605 Nottingham Ave.
St. Louis, MO 63109-2661
Toll Free: 1-877-609-4226
Text: 1-314-282-7214
Copyright 2024. All rights reserved. Information on this site is intended for informational purposes only Our foundation does not engage in the practice of medicine. Please consult a physician to obtain personal healthcare and treatment options. 501(c) 3 Nonprofit Tax ID: 27-1214308.
