Part of our Go with Us to Conferences - EULAR2021 Debriefs & associated with our Rheumy RoundsⓇ series.
AiArthritis Voices 360 Full Episode 64
Air Date: August 1, 2021
En este episodio, Tiffany, Deb, Patrice y Katie, todas ellas personas que viven con enfermedades de AiArthritis, asistieron al Congreso Científico de la Alianza Europea de Asociaciones de Reumatología (EULAR) de 2021 y se reunieron varias veces a lo largo de unas semanas para revisar las sesiones más relevantes para nuestra comunidad y para el trabajo que realizamos en nuestra organización.
The sessions reviewed in this segment involved "patient-rheumy communication", which we were happy to see covered so much at the conference! So, while historically all of our debriefs are patient-led only, we decided for the first time to invite two rheumatologists to 'zoom bomb' our discussion. In this review, join Tiffany, Deb, Katie, and Patrice AND Al and Jeff (Dr. Al Kim - Tiffany's own rheumy - and Dr. Jeff Sparks) as they talk about the EULAR session content around communication and office visit needs (patient side and rheumy side). Shared-decision making and the evolution of visits to include discussions on comorbidities (and multi-morbidities) AND associated "holistic" approaches was also visited.
Al and Jeff were invited to zoom bomb our session right as we were giving our opinions about our rheumy visits. Hey, we need all voices at the table for these conversations, right?!
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El episodio de hoy se transmitió en vivo por YouTube. Haz clic en el botón de abajo para ver el análisis completo con Tiffany, Deb, la Dra. Kim, el Dr. Sparks, y también con la participación de Patrice Johnson y Katie Simons. El zoom explosivo se produce alrededor del minuto 20.
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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
Sus coanfitriones e invitados: ¿Quiénes están en la mesa en este episodio?
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.
Patrice Johnson
Katie Simons
Diagnosed with Juvenile Rheumatoid Arthritis (now called Juvenile Idiopathic Arthritis) at age 12 and recently found a new home at AiArthritis as Senior Program & Communications Manager. She earned a Masters of Public Administration, nonprofit management concentration, from Oakland University in Rochester, Michigan.
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 es profesor adjunto de Medicina e investigador clínico en el Brigham and Women's Hospital de Boston, Massachusetts. Está profundamente comprometido con la determinación de los factores de riesgo para el desarrollo y la progresión de la enfermedad pulmonar intersticial asociada a la artritis reumatoide (EPI-AR) con el fin de crear estrategias de prevención que reduzcan el riesgo de aparición de EPI-AR y mejoren los resultados de los pacientes. Como líder en el campo, el Dr. Sparks realiza estudios epidemiológicos originales y centrados en el paciente, que se presentan en congresos internacionales y se publican en las principales revistas del sector. Ha desempeñado funciones de liderazgo en el Colegio Americano de Reumatología (ACR) relacionadas con las guías de manejo de la artritis reumatoide, presidiendo el subcomité de Investigadores Noveles y siendo el investigador principal del programa nacional de mentoría CARMA (Creating Adult Rheumatology Mentorship in Academia).
Sitio web:
Dr. Jeff Sparks, Universidad de HarvardTwitter: @jeffsparks
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