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On Sunday, join International Foundation for AiArthritis and fellow patient cohosts as they lead discussions in the patient community as well as consult with stakeholders worldwide to solve the problems that matter most in the AiArthritis community.
Episodes
Sunday Oct 03, 2021
Sunday Oct 03, 2021
This week join your patient co-hosts Tiffany Westrich-Robertson, Cheryl Koehn, and Maarten de Wit as they introduce us to the Pathway of Patient Engagement in Rheumatology Research. Tiffany is the founder and CEO of AiArthritis. Cheryl Koehn is the founder and President of Arthritis Consumer Experts - Canada’s largest patient organization. Maarten is the Chairperson for the Study Group for Collaborative Research for EULAR (European Alliance of Associations for Rheumatology).
Tiffany, Cheryl, and Maarten are all leaders of the ACTion Council - an organization dedicated to preserving the past and advancing the future in patient-involved rheumatology research. The ACTion Council consists of stakeholder groups from patient organizations, health charities, coalitions, non-pharmacologic researchers, government agencies/initiated programs, and industry. Between 60 – 75% of those invited to participate have engaged in research collaboration as patient stakeholders.
Today’s episode is about the Pathway of Patient Engagement in Rheumatology Research, the first deliverable produced by the ACTion Council. The purpose of the initial Pathway is to trace the evolution of patient engagement in rheumatology research, including identifying historical milestones, novel “firsts”, and tools. Then, as patient involvement continues to popularize and branch off into different directions, new entries can be added. New entries will be collected and added in the second half of 2021, and the Pathway will be updated bi-annually.
Tune in to this episode to learn why the Pathway is important, how it can be helpful to you as an AiArthritis stakeholder, and how to avoid tokenism when you want to participate as a patient research partner in rheumatology research.
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).
Episode 66: The Pathway of Patient Engagement in Rheumatology Research
00:52 - Tiffany welcomes listeners.
01:20 - Tiffany is joined by fellow patient co-hosts Cheryl Koehn and Maarten de Wit
02:24 - Cheryl is a person living with Rheumatoid Arthritis and works for Arthritis Consumer Experts - Canada’s largest patient organization.
04:29 - Maarten is a person living with Psoriatic Arthritis and the Chairperson for the Study Group for Collaborative Research for EULAR (European Alliance of Associations for Rheumatology).
07:40 - Today’s episode is about Patient Engagement in the Rheumatology research space and the Pathway of Patient Engagement in Rheumatology Research as developed by The ACTion Council.
08:44 - Tiffany explains the origin of the Pathway project.
10:36 - Cheryl explains how she originally became involved in research collaboration.
18:02 - In 2017, AiArthritis organized a roundtable of the people most involved globally in patient engagement in rheumatology research.
20:13 - The Pathway to Patient Engagement was created by a group of stakeholders that grew out of that roundtable meeting called The Action Council.
21:18 - The Action Council is a patient-led initiative, and 70% of the members are patients living with rheumatic disease.
23:10 - A patient research partner (a term coined by Maarten originally) is a patient who has an equal role on a research team, collaborating on an equal level with other researchers at every stage of the research.
25:41 - The goal of patient research partners is to make the research more patient-centered and more fitting of patients needs and beneficial to improving patients’ daily lives.
25:55 - Patient research partners should ideally be co-authors of the final research publication.
27:21 - Cheryl believes that incorporating patient research partners and having them co-author research publications is the “moral, ethical thing to do.”
27:39 - Living daily with arthritis requires a lot of skill that non-patient researchers do not possess. These skills are fundamental to good research.
29:28 - The patient engagement / patient researcher model must be strategic, scalable, and sustainable.
32:40 - One of the goals of the Pathway is to avoid Tokenism in research initiatives.
33:25 - Simply mandating patient involvement in research doesn’t work due to problems with tokenism.
34:21 - Creators took care to make the Pathway a user-friendly instrument.
35:03 - Mandating patient engagement in research (for funding) is necessary to get researchers to change their methodology, but it is incumbent on the patient community to safeguard against tokenism.
36:38 - One thing you can do to safeguard against tokenism is to refuse to cooperate with any research project trying to recruit patients at the last minute before a funding deadline.
37:35 - If you are offered a position on a research team that does not include co-authorship, refuse it.
37:51 - If you are not given a power title, you will not hold power in the project.
38:26 - The Pathway is a great place to learn if you are new to patient participation in research, but it is also a great place to find models for research if you are already a leader in patient research.
39:59 - Community-led research can be valid, published research even without major research organizations or funding sources involved.
41:24 - You can find the Pathway at rheumactioncouncil.org or on social media @rheumcouncil.
43:43 - There are videos on the website that explain in detail what the tool is and how to use it.
47:04 - Any stakeholder can contribute to the Pathway.
48:16 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow or on any podcast platform.
Be sure to check out our top-rated show on Feedspot!
Sunday Sep 05, 2021
Sunday Sep 05, 2021
This week join your recurring patient co-hosts Katie Simons and Deb Constien as they discuss the experience of being diagnosed with arthritis as a juvenile and the importance of differentiating between the different types of AiArthritis diseases. Katie is the Senior Program and Communications Manager for AiArthritis and a patient living with inflammatory arthritis. Deb is a dietitian, an experienced patient advocate and ambassador for the AiArthritis community, and a patient living with inflammatory arthritis. They both discuss the complicated nature of identifying just precisely what their diagnosis is as adults who were originally diagnosed with a juvenile form of arthritis.
This episode will tackle subjects of particular importance to the AiArthritis community such as differentiation of disease types, early intervention, shared decision-making, Stills Disease Awareness, and the experience of living with an invisible illness. Life with an invisible illness can be particularly challenging for children and adolescents, and our co-hosts share their experiences as teens faced with a new diagnosis and limitations. For more information on living with an invisible illness, check out Episode 12: Invisible Disease.
After you listen to this episode, we want to hear from you to keep the conversation going. If you were diagnosed as a young person, are you still using the initial diagnosis? Have you changed the way you describe your condition to others since becoming an adult or since the medical community changed the name of your disease? How do you feel about having an accurate diagnosis or about changing your diagnosis?
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).
Episode 65: Young and Invisible
00:53 - Katie welcomes listeners.
01:16 - Today’s topic is about being young and diagnosed with an invisible illness, as well as the importance of differentiating between the different types of AiArthritis diseases.
01:31 - Katie is joined by Deb, a recurring co-host who was diagnosed with RA at age 15.
02:05 - Katie was also diagnosed as a juvenile with JIA (juvenile idiopathic arthritis).
02:52 - Both Katie and Deb were treated by an adult rheumatologist because pediatric rheumatologists are very rare if they are available in your community at all.
03:20 - Deb and Katie share their respective diagnosis stories.
09:56 - It can be difficult for juveniles to get peer support because most people assume arthritis only affects elderly people.
11:07 - Friends sometimes stop inviting patients to participate in activities because they don’t understand the physical limitations of people with AiArthritis.
12:25 - Juvenile arthritis patients may find it difficult to continue activities they had previously enjoyed because of pain and fatigue.
14:48 - We want to hear from our listeners: If you were diagnosed as a young person, are you still using the same diagnosis?
15:12 - Stills Disease Awareness Day is coming soon.
15:24 - Stills Disease is actually an umbrella term that encompasses Systemic Juvenile Idiopathic Arthritis and Adult Stills Disease (the difference being whether you were diagnosed before or after age 16).
17:55 - Katie was diagnosed with JRA, but she generally refers to her disease as simply RA or arthritis since becoming an adult.
19:27 - Getting an accurate diagnosis can take many years because doctors don’t believe the patient or symptoms are not obvious or the symptoms do not match any one specific diagnosis readily.
24:01 - Early intervention is critical if the patient is ever going to achieve remission, so identifying the appropriate screening tools and making sure all AiArthritis patients receive them is very important.
25:56 - Especially in very young children, persistent parents are critical to getting an accurate diagnosis and early intervention.
29:37 - Patients living with AiArthritis diseases sometimes feel like they are just waiting for their condition to deteriorate.
30:06 - New medications for AiArthritis hitting the market provide hope for all patients to improve.
33:16 - With regard to changing medications, having surgeries, or any other therapeutic decisions, it’s important that the patient be emotionally ready to proceed.
35:50 - Shared Decision Making between patients and rheumatologists helps ensure that patients are comfortable with the therapeutic choices being made for their care.
37:22 - To continue this conversation, join us in the Facebook group for the talk show.
37:28 - You can also find us on all social media platforms @IFAiArthritis.
38:43 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow or on any podcast platform.
39:04 - Or message us via social media or email us at podcast@aiarthritis.org.
Be sure to check out our top-rated show on Feedspot!
Sunday Aug 01, 2021
Sunday Aug 01, 2021
In this episode, Tiffany, Deb, Patrice, and Katie - all persons living with AiArthritis diseases - attended the 2021 European Alliance of Associations for Rheumatology (EULAR) Scientific Congress and convened several times over a few weeks to review the sessions most relevant to our community and to the work we do at our organization.
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.
Dr. Al Kim ("Al") is from the Washington University School of Medicine and Dr. Jeff Sparks ("Jeff") is from the Harvard School of Medicine. They 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?!
Today's show is a segment from our "Go with Us!" to Conferences series, EULAR 2021 Scientific Congress patient-led debriefs, all which can be viewed in full on our YouTube Channel). It is also considered part of our Rheumy RoundsⓇ special series, where patients and rheumatology professionals unite - as equals - to discuss problems that, if solved, could improve outcomes in the rheumatology community.
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).
Episode 64: The office visit - viewpoints from both the patients AND the rheumies!
00:53 - Katie welcomes listeners.
01:20 - Katie is joined today by recurring co-hosts Tiffany, Deb, and Patrice and rheumatologists Dr Al Kim and Dr Jeff Sparks.
01:55 - Today’s episode will focus on the challenges of communication between patients and rheumatologists during office visits.
04:28 - What does a doctor plan for in a 10-20 minute visit?
04:34 - Doctors are focusing on maximizing therapeutic use of medications, especially minimizing steroid usage.
05:07 - They then focus on health maintenance issues like cardiovascular disease management.
05:36 - Emotional aspects of living with rheumatic disease or quality of life issues for patients are highly unpredictable and difficult to anticipate, and physicians have limited tools for addressing these concerns.
08:22 - Rheumatologists feel constantly pressed for time because 20 minute appointment slots are never enough time, especially for complex cases, and often the visits don’t even receive the full 20 minutes due to outside logistical complications.
09:11 - The top priorities for Jeff are to get a full interval history of how the patient has been doing since the last visit and to make sure the current medication regimen is correct for the patient.
10:33 - Jeff hopes to get to health maintenance issues before the time expires.
11:53 - How do rheumatologists fit conversations about holistic approaches to disease management in that 20 minute appointment model?
12:07 - It’s almost impossible to do during the standard appointment, so some doctors are trying to connect patients with other resources like dietitians, physical therapists, or even yoga instructors instead of trying to provide those services themselves.
13:17 - An ideal would be to have a multi-disciplinary center where patients see all the specialists in the same day to receive holistic care, but that doesn’t really happen - at least in the American healthcare system.
14:58 - What is the ideal level of preparation for a patient, from the perspective of a rheumatologist?
15:09 - Patients who have 3-10 questions planned in advance, especially when those questions are related to medication regimens or therapeutic plans.
17:24 - Do you have issues with patient compliance with prescribed medications?
18:11 - Patient adherence is definitely an issue, and rheumatologists would rather know if you are not taking your medication and why so they can get you on a medication that will work for you.
19:48 - Rheumatologists are trying to use the term non-concordance in place of compliance or adherence because neither of those terms are consistent with shared decision making principles.
20:02 - Eroded communication between patient and provider is responsible for non-concordance because it leads patients to make their own decisions about certain medications.
24:35 - What are the biggest changes you’ve seen in rheumatology visits over the course of your career?
24:53 - The changing requirements of documentation for medical records has created an incredible amount of bureaucracy that is not helpful to caring for patients and strips away the humanity of providing medical care.
25:58 - To watch the entirety of this conversation, check out our EULAR debrief video #6 on our YouTube Channel.
26:48 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow.
26:57 - Please consider donating at aiarthritis.org because we need your support to keep this show and all of our initiatives moving forward.
Be sure to check out our top-rated show on Feedspot!
Sunday Jul 04, 2021
Sunday Jul 04, 2021
This week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis (AiArthritis), and recurring 2021 patient co-host Deb Constien as they welcome two special guests to the table for a new episode of our Special Series on COVID-19. They are joined today by two practicing adult rheumatologists: Dr. Al Kim ("Al") of the Washington University School of Medicine and Dr. Jeff Sparks ("Jeff") of the Harvard School of Medicine *.
In this segment of the debrief, the rheumies update us on COVID-19 vaccinations and new 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.
Shared decision making about therapeutic plans, including vaccination, is the other hot topic for the day! The rheumies and our co-hosts dish about the topics on patients’ minds including antibodies, boosters, and next steps. And Tiffany gives a special thank you to Janssen Pharmaceuticals for investing in the organizations new initiative to prepare patients to engage in shared decision making about COVID-19 and vaccines.
This special episode was recorded during a EULAR 2021 debrief. You can watch the entire, unedited video recording (that also includes Katie and Patrice) HERE. While there, watch all of our EULAR 2021 content on our YouTube Channel.
*Actually, at minute marker 20 in the full video, 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?!
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).
Episode 63: COVID-19, Vaccinations, Shared-Decision Making, & Rheumy Communications
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
Be sure to check out our top-rated show on Feedspot!
Sunday Jun 06, 2021
Sunday Jun 06, 2021
This week join your patient co-hosts Tiffany Westrich-Robertson, Deb Constien, Patrice Johnson, Katie Simons, and Leslie Rott Welsbacher as they brief our AiArthritis patient community on the first day of EULAR 2021. Tiffany, Deb, and Katie are the core team members attending the conference, but as part of our "Go with Us! to Conferences" program, we have invited three patients to be part of the experience, too! Joining us for this debrief are Patrice Johnson and Leslie Welsbacher. Patients are one of three pillars of EULAR (researchers and medical professionals make up the other two) and are encouraged to attend and participate in the annual conference. So here we come!
Formerly known as the European League Against Rheumatism, the organization is now called European Alliance of Associations for Rheumatology (EULAR) and is in the midst of hosting their annual conference online for the second consecutive year due to the COVID-19 pandemic. Our first review covers emerging conference themes (inflammation as an umbrella, comorbidities and "multi-morbidities") and covers featured recommendations for disease management.
Whether in person, or attending online, our organization always attends, then does patient-led video debriefs - highlighting lessons learned from sessions and reporting back what is new in research. But we don't just tell you what we learned, we invite you to learn with us. So we invite you to get comfy on your couch with a glass of your preferred beverage, pretend we are all together in Paris (intended location of the conference before it was moved to the virtual platform), and enjoy our debrief of this first round of sessions. Then head over to our YouTube Channel or online patient platform to learn even more!
Also, check out Leslie's blog: Getting Closer To Myself - where she chronicles life with RA and Lupus.
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!
Episode 62: EULAR 2021
00:52 - Tiffany welcomes listeners.
01:41 - Tiffany is joined by recurring co-hosts Deb and Patrice, as well as fellow patient co-hosts Katie and Leslie.
04:04 - Today’s episode is brought to you from the European Alliance of Associations for Rheumatology Virtual Conference 2021 (formerly the European League Against Rheumatism).
07:29 - Collaboration is a major theme of the conference this year.
08:06 - Patients are 1 of 3 pillars in the organizational structure of EULAR (along with researchers and health professionals), so they are welcomed and encouraged to participate in the annual conference.
09:11 - Inflammation is another major theme of the conference, even including a session on the impact of inflammation on dementia.
13:17 - One session Tiffany and Patrice attended was titled “HELP! What do I need to cope with my rheumatic disease?”
14:32 - Patrice gives a brief summary of the session.
18:13 - One of the key themes of the session was the interaction between genetics and environmental triggers and how educating people about potential triggers may help prevent onset of disease in people who are genetically predisposed to develop rheumatic disease.
24:09 - Comorbidity is when the primary disease triggered some other condition, whereas multi-morbidity is when some factor to do with the patient spontaneously triggers multiple disease conditions.
27:33 - The second session the co-hosts attended was on exercise.
28:50 - Tiffany asks the other co-hosts: do you have any fears about exercising?
29:00 - Patrice exercises every day and says movement makes her feel better.
30:20 - In Italy 90% of people living with rheumatic diseases are inactive. In the US around 70% of patients are inactive. In Finland, around 40% of patients were inactive (which was the most active country in the study).
30:49 - Researchers want to know why more patients don’t exercise when the studies show that exercise helps patients feel better.
31:35 - Researchers put a group of 136 rheumatic patients on a high-intensity weight-bearing exercises for 2 years and did not have any more damage or disease progression than the control group.
34:22 - Tiffany talks about the importance of knowing your limits as related to your specific diagnosis. Keep in mind that all exercise advice is generalized and you have to figure out the routine that works for you.
36:15 - Katie talks about working with physical therapists who understand your condition to look for expert guidance on what works for you.
38:00 - The next session the co-hosts attended was on Remission and Lupus: Is remission achievable with today’s drugs?
38:31 - In recent studies, at least 50% of patients were able to achieve at least one remission state.
38:38 - For people who have had Lupus a long time, long-term remission is very rare.
39:15 - Clinical remission without treatment is extremely rare and probably not a realistic goal for patients, but clinical remission with treatment is definitely possible.
42:45 - Patrice asks Leslie: How did you feel about a presenter describing Lupus patients’ quality of life as poor?
43:44 - Leslie discusses people’s perception of Lupus, quality of life issues, and health equity.
52:28 - Tiffany attended a session on multidisciplinary care.
52:48 - Tiffany asks her co-hosts: how many different doctors do you have?
53:00 - Only Deb and Tiffany have teams that work together (both within University systems). Everyone else has doctors that do not talk to each other.
54:10 - Tiffany also attended a session about RA that is difficult to treat , where researchers defined “difficult to treat” as failing 2 or more treatments that use different mechanisms of action.
55:50 - AiArthritis is partnered with OMERACT and EULAR on a study about synovial tissue studies.
56:46 - Aurelie presented at a session based on this research where she recommended 14 points to EULAR about changing physician practices with regard to patient education and biopsy collection.
1:02:00 - This episode will be broken down into smaller video segments and posted to our YouTube channel for anyone interested in watching specific segments.
1:02:44 - All of the videos from EULAR 2020 are also available on our YouTube channel as well.
1:02:55 - You can also find any of our previous podcast episodes at aiarthritis.org/talkshow.
1:03:10 - Connect with us on social media @ IFAiArthritis on all platforms.
1:03:30 - Email Katie at katie@aiarthritis.org if you are interested in attending future conferences (please put Go To Conferences in the subject line).
1:03:45 - Please consider donating at aiarthritis.org because we need your support to keep this show and all of our initiatives moving forward.
1:04:21 - Follow Leslie’s blog @ GettingCloserToMyself.blogspot.com.
1:05:00 - Tiffany thanks listeners for joining all of our co-hosts today.
Sunday May 02, 2021
Sunday May 02, 2021
This week join your patient co-hosts Tiffany Westrich-Robertson and Deb Constein as they discuss AiArthritis’ 2021 Annual Fundraising Effort: The Charity Talk. Since many of the members of the AiArthritis community are unable to walk long distances, AiArthritis decided to host a Charity Talk in lieu of the traditional Charity Walk. The purpose is to raise awareness, educate the public about our diseases, and raise money to support the ongoing work our organization does to serve the 450 million people worldwide living with AiArthritis diseases.
Would you like to get involved? You can download free materials to host your own Charity Talk to educate your friends and family about the nature of your disease. Tune in to this special mini episode to find out all the details and get started. We need your help to promote early detection and treatment, help families and friends be supportive of people living with AiArthritis diseases, and help patients grapple with their changing roles in life after diagnosis. All of the money raised from these events will go to support the mission of AiArthritis to elevate the patient voice in global conversations with all stakeholders in education, advocacy, and research in the field of autoimmune and autoinflammatory arthritis.
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).
Episode 61: Charity Talk
00:52 - Tiffany welcomes listeners.
01:13 - Tiffany is joined by fellow patient co-host, Deb
02:15 - On May 1st, AiArthritis hosted a virtual Charity Talk (an alternative to a traditional Charity Walk).
05:28 - A primary focus of the Charity Talks is to create educational materials to communicate to the public that AiArthritis diseases are systemic, full body diseases. They are not “just” arthritis.
06:23 - All of the materials from the event are available for anyone to use to organize their own event to educate friends and family.
09:13 - Lack of understanding or mistaken assumptions about physical abilities can create conflicts between AiArthritis patients and their families or friends.
10:18 - Delayed diagnosis leads to delayed treatment and irreversible damage so educating the public can also help people with symptoms get a diagnosis sooner.
14:03 - The Charity Talk materials also cover the idea of “Who Am I Now?” and how the roles of an AiArthritis patient may have to change after diagnosis
16:21 - Visit aiarthritis.org/charitytalk to download all of the free materials to host your own Charity Talk, especially in the month of May in support of World Autoimmune and Autoinflammatory Arthritis Day (May 20th)
17:00 - Donations are also accepted on the same webpage to support all the work AiArthritis does to help patients living with AiArthritis Diseases worldwide.
17:44 - Tiffany thanks listeners for their continued support.
Be sure to check out our top-rated show on Feedspot!
Sunday Apr 04, 2021
Sunday Apr 04, 2021
This week, join your patient co-hosts Kelly Conway and Rick Phillips and special guest Heather Kenjorski for a frank discussion about mental health, AiArthritis patients, and the COVID-19 pandemic. Kelly is a co-founder of AiArthritis and the author of the blog As My Joints Turn: My Autoimmune Soap Opera, as well as a recurring co-host for AiArthritis Voices 360. Rick is the founder of RA Diabetes, a website devoted to people who have both Rheumatoid Arthritis and Type I Diabetes and a returning AiArthritis Voices 360 co-host. You can check out Rick’s recent appearance in Episode 48: Support, which also tackled issues relating to mental and emotional wellness. Heather is a licensed social worker who has experience treating AiArthritis and other chronically ill patients dealing with depression and anxiety.
On February 21, 2021 Kelly wrote a very poignant blog post titled “Not A Me Too Moment” where she spoke very openly about her battle with depression resulting from chronic illness and how the tragedies she has experienced during the pandemic have led to her depression being out of control at the current time. In response to this blog post, Rick shared that he too has been in treatment for many years for depression. They decided to get together and bring in a professional to discuss this topic in more detail for the benefit of all the people listening to the show who may also be experiencing depression, especially those who are not currently seeking help from the medical community for their struggles.
We invite you to pull up a chair and listen in as Kelly and Rick share deeply personal information about their lives that many people avoid discussing due to the stigma attached to mental health. Together with Heather, they will discuss the bravery inherent in asking for help when you need it, how to go about getting help if you think you might benefit from having someone to talk to about your issues, how to recognize when you or someone else may be struggling, and what resources exist for people who are having difficulty accessing mental health treatment. This is an important episode, and you don’t want to miss it.
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).
Episode 60: Depression
00:52 - Kelly welcomes listeners.
01:30 - Kelly is joined by fellow patient co-host, Rick Phillips and licensed social worker, Heather Kenjorski.
3:03 - Today’s topic is depression among people living with AiArthritis diseases, especially during the COVID-19 pandemic.
04:45 - Today’s episode was inspired by Kelly’s blog post titled “Not a Me Too Moment” on her blog As My Joints Turn: My Autoimmune Soap Opera.
07:10 - Rick wants people to know that medication and talk therapy can help, and there is no need to suffer in silence.
07:15 - Heather, have you seen an increase in patients experiencing depression since the onset of the pandemic?
07:40 - Many of the coping mechanisms suggested for people struggling with depression and anxiety are not possible during the pandemic which has led to an increase in isolation and feelings of sadness and hopelessness.
08:18 - Staying home and quarantining exacerbated people’s existing struggles with depression and anxiety.
10:40 - One study presented at ACR 2020 found that some Lupus patients felt better emotionally at the start of the pandemic because the entire community was experiencing life the way they usually do (avoiding germs, curbside pickup, etc).
12:30 - Some AiArthritis patients experienced extreme emotional stress from being forced to go to work during the pandemic when they felt it was safer to stay home.
16:04 - Heather what are some of the signs and symptoms of depression?
16:31 - People are very skilled at putting on a brave face, so you can’t rely on their outward appearance.
16:52 - Signs of depression may be a loss of interest in things someone used to enjoy like activities, eating, or communicating with others.
17:18 - Sudden loss of appetite or eating much more than normal can both be signs of depression.
17:39 - Fatigue or having no desire to engage with people can be a sign.
17:45 - Depressed people may not take care of themselves like getting dressed, showering, or brushing their teeth.
18:03 - If you can’t look forward to things or feel hopeless, that could be a sign of depression.
18:44 - Anger can also be a symptom of depression.
19:46 - Depression is not a sign of weakness, and life gets better after treatment.
22:30 - Some therapy practices are full right now because so many people are seeking mental health assistance.
23:11 - Heather, do you find that people have a difficult time admitting that they need help?
23:40 - There is definitely still a stigma attached to receiving therapy, and it’s a shame because it keeps people from getting the help that they need.
25:02 - It is courageous to get therapy and address your issues.
25:10 - To stay in a miserable state of mind is not strength.
29:36 - Caretakers often experience serious depression and have limited avenues for emotional support outside of therapy.
30:29 - Heather do you have any other tools (besides medicine and talk therapy) that you find useful in helping people battling depression?
31:06 - Self-care is key for everyone, and it’s something people aren’t necessarily very good at doing.
32:11 - Journaling is a great way to get in touch with your own feelings.
33:02 - Meditation, deep-breathing exercises, and physical movement are all important aspects of self-care.
37:49 - The more people try to avoid their own negative thoughts, the more powerful those thoughts become so learning to meditate and be present with your own thoughts - even if they aren’t comfortable thoughts - can be very important to mental wellness.
39:03 - It may be helpful to remember that depression is not a permanent state; it will end.
40:14 - Chronic illness isn’t the end of the world, but it is a different way of living in the world.
42:30 - How can we help our community identify when they may need help or find help for people who cannot afford mental health assistance?
43:07 - Many communities have assistance for people who cannot afford private therapy, but you need to reach out to your local mental health advocates, mental health society, family services, local hospitals, or even private doctors and ask what is available in your area.
45:08 - Virtual appointments are now available because of the pandemic which has opened many doors for people who lacked transportation to appointments.
49:51 - Like us or message us on social media @IFAiArthritis on all platforms to stay informed and involved or email us at podcast@aiarthritis.org
50:33 - Find all our episodes on our website at aiarthrits.org/talkshow
51:08 - You can reach Rick at info@RADiabetes.com or follow Rick’s blogs at ankylosingspondylitis.net and rheumatoidarthritis.net
51:49 - Please be part of the continued conversation at aiarthrisvoices.org.
52:03 - Kelly thanks her co-hosts and the listeners.
Be sure to check out our top-rated show on Feedspot!
Sunday Mar 21, 2021
Sunday Mar 21, 2021
This week join your patient host Tiffany Westrich-Robertson, CEO of International Foundation for AiArthritis, as she discusses the mission and future projects of The International Foundation for Autoimmune and Autoinflammatory Arthritis and the AiArthritis Voices 360 Talk Show.
The mission of AiArthritis is to elevate and center the patient voice in global conversations with all stakeholders about solving problems facing the autoimmune and autoinflammatory arthritis community. We do this by engaging in a 6-step process (as outlined in Episode 27: The Method To Our Madness) for bringing pressing issues to the table for conversations to create solutions to improve the lives of the 450 million people worldwide living with AiArthritis diseases.
Our organization is constantly evolving to meet those changing needs. As we look to a future where people will be able to interact in person more without the fear of COVID-19, we are excited to transition to a model for the show that will allow us to embrace our original vision of a “touring” talkshow. To prepare for this, we are changing the airing schedule of the show and diversifying our media platforms so that conversations building on core issues raised on the talkshow may be addressed through conversations on other platforms like social media, Youtube, webinars, and in our AiArthritis Voices online forum. We can’t wait to see YOU at the table soon for one of these chats.
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!
Episode 59: Learned Experiences - Let the Evolution Continue!
00:52 - Tiffany welcomes listeners.
01:13 - Today’s episode is about learned experiences and the next evolution of the AiArthritis Voices 360 talkshow.
05:56 - In March of 2020, Tiffany contracted COVID-19, but nobody believed her at the time.
07:52 - Tiffany received her first dose of the COVID-19 vaccine yesterday.
08:23 - AiArthritis has worked diligently to bring constantly evolving information about COVID-19 to the AiArthritis patient community and to involve other stakeholders in these conversations.
11:00 - The organization follows a 6-step process to address issues. These are discussed in detail in Episode 27: The Method to Our Madness.
12:06 - AiArthritis Voices 360 will air 1 core episode the first Sunday of each month, beginning in April 2021.
13:43 - There will be unlimited breakout conversations on a variety of platforms that support those core issues.
14:59 - We are looking forward to an upcoming episode on value assessments used in pricing AiArthritis medications.
15:52 - We also have an episode coming up about health equity and diversity, as well as continued conversations about autoimmune and autoinflammatory arthritis vs other forms of arthritis.
16:25 - To submit a topic for conversation, go to aiarthrits.org/talkshow and click on the button that says “submit your topic.”
17:15 - Sign up to stay informed on all our ongoing conversations by receiving our e-newsletter at aiarthritis.org.
17:45 - Like us on social media @IFAiArthritis on all platforms to stay informed and involved as well.
18:34 - Tiffany thanks listeners.
Be sure to check out our top-rated show on Feedspot!
Sunday Mar 07, 2021
Sunday Mar 07, 2021
This week join your patient co-host Deb Constien as she reports from the 2020 American College of Rheumatology Conference on Dietary Modifications and the Microbiome as potential future therapeutic options for the treatment of AiArthritis diseases. Deb is a medically retired registered dietitian who has been living with Rheumatoid Arthritis for 39 years. She attended two fascinating sessions on these topics at the 2020 ACR Conference and gives a State of the Research presentation for all of us who weren’t able to attend the sessions ourselves.
AiArthritis believes that the future of Rheumatology lies in precision medicine and shared-decision-making where a patient’s genetics, lifestyle, environment, and medical history all play a role in determining the best course of treatment to be decided upon by the patient and their Rheumatologist working together. This vision for the future of healthcare would no longer rely on one-size-fits-all approaches to treating disease where patients are subjected to a series of failed medications (ie step therapy) until they stumble on one that happens to work well for their situation.
Researchers believe they are very close to identifying specific biomarkers that can determine a patient’s unique dietary needs that would help - in concert with pharmaceutical therapies - to reduce inflammation levels in the body. Deb walks us through the new research into dietary modifications and the microbiome and their respective roles in managing inflammation levels in patients suffering with AiArthritis diseases, as well as how these might be utilized in the future of precision medicine.
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!
Episode 58:
Diet, Research, & AiArthritis - an ACR Special Presentation
00:52 - Deb welcomes listeners.
01:09 - Deb is a patient living with RA and a recurring Voices 360 co-host, as well as a retired Registered Dietitian
01:30 - This episode is based on two 2020 American College of Rheumatology Conference session titled: Modulation of RA Activity through Dietary Restoration of the Microbiome and Trials of Diet on Rheumatoid Arthritis
02:10 - The microbiome is a new frontier in precision medicine for the treatment of AiArthritis Diseases.
03:59 - Dietary interventions have not yet been established as a complementary treatment for RA like it has been for inflammatory bowel disease, but researchers believe they are close to finding a connection.
04:24 - The microbiome is a promising new way to monitor health and use it as a high dimensional biomarker to improve patient outcomes.
05:35 - Bacteria in your gut can impact inflammation.
06:23 - The Inflammatory Arthritis Microbiome Consortium (IAMC) collected diagnostics from stool and blood to examine bacteria and how inflammation may be connected to each different strain of bacteria found in the intestines.
07:31 - The IAMC is also studying how genetics may impact inflammatory arthritis.
08:04 - One study looked at the impact of a diet high in anti-inflammatory foods on RA patients.
09:31 - The anti-inflammatory diet excluded soy, gluten, and refined sugar, but included some dairy to make it more palatable to the patients.
11:19 - Some patients did not improve at all with the highly restrictive diet, but some had improvements in pain and fatigue.
12:51 - Deb has done a 30 day Elimination Diet to try and identify inflammatory triggers, but none of the common triggers impacted her pain at all.
13:16 - Deb believes that a newly diagnosed patient might have better results than someone like her who has had RA for decades.
15:11 - Pain, fatigue, and general sense of wellness improved for the patients that had measurable results from the diet changes.
15:58 - There was discussion in the session of possibly pre-treating patients with antibiotics or cleanses to prepare patients for starting an anti-inflammatory diet as a potential next step in the research.
19:13 - To discuss this topic in more depth, visit us @IFAiArthritis on all social media platforms, email us at podcast@aiarthritis.org, or sign up to join us inside our new project community AiArthritis Voices @ aiarthritis.org/aiarthritisvoices
20:26 - Follow us anywhere you listen to podcasts and give us a 5-Star Rating
20:38 - To support the show, consider making a donation on our website at aiarthritis.org
Be sure to check out our top-rated show on Feedspot!
A special you to Bristol Myers Squibb and PhRMA for helping to make this show possible.
Wednesday Feb 24, 2021
Wednesday Feb 24, 2021
This week join your patient co-hosts, Tiffany Westrich-Robertson, CEO of the International Foundation for Autoimmune and Autoinflammatory Arthritis, and Kelly Conway, co-founder of AiArthritis and author of the popular blog As My Joints Turn: My Autoimmune Soap Opera, as they welcome three special guests to the table for a new episode of the Voices 360 Special Series: Rheumy Rounds. They are joined today by three practicing adult rheumatologists: Dr. Al Kim of the Washington University School of Medicine, Dr. Vibeke Strand of the Stanford University School of Medicine, and Dr. Jeff Sparks of the Harvard School of Medicine. In this special episode of Rheumy Rounds, they discuss patient and rheumatologist vaccination hesitation and key education points, while providing insights to assess benefits and risks and promote shared-decision making strategies.
On February 10, 2021 the American College of Rheumatology published clinical guidance on COVID-19 vaccinations which suggests that all rheumatic disease patients should be vaccinated for COVID-19 and provided very specific recommendations regarding modifications needed - if any - to immunosuppressive therapies before and after vaccination. But most patients don’t read press releases from ACR. Not all patients will have an appointment with their rheumatologist between February 10th and the date they may be eligible or able to receive the vaccine in their specific location. This round table discussion seeks to prepare all stakeholders to participate in effective shared decision making conversations between patient and provider so that all members of the community can make the best decision for their own health, as well as the best decision for their families.
So pull up a chair as these three rheumatologists answer patient-provided questions about vaccine efficacy, side-effects, availability, and much more. Then consider getting involved. The COVID-19 Global Rheumatology Alliance is seeking participants for their survey on how the pandemic has impacted rheumatic disease patients. If you are an adult patient living with an AiArthritis disease, or the parent of a juvenile patient, you can sign up to participate in the survey here. But don’t stop there! We also want to hear from you. Reach out to us on social media (@ifAiArthritis on all platforms) or via email (to podcast@aiarthritis.org) and give us your insight on this critical question: how can we get more information to patients about the vaccine and the ACR guidance to facilitate shared decision-making?
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!
RheumyRounds is a concept developed by AiArthritis to bring rheumatology professionals & persons affected by AiArthritis diseases to the same table, as equals, to discuss important community topics that, if solved, would improve communication and positively impact outcomes. https://www.aiarthritis.org/rheumyrounds
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Disclaimer: This is meant to be informative, but not to provide medical advice. Every person living with AiArthritis diseases must make vaccination choices based on their self-education then contact their rheumatologist or practicing physician and determine a solution together (shared-decision making). It is important you determine the best course of action for YOU, based on your own individual health situation.
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Episode 56 - Rheumy Rounds: Vaccination Hesitation
00:53 - Tiffany welcomes listeners.
01:56 - Tiffany welcomes her fellow patient co-host and co-founder of AiArthritis, Kelly Conway, and special guests Dr. Al Kim, Dr. Vibeke Strand, and Dr. Jeff Sparks.
02:28 - Dr. Al Kim is an adult rheumatologist at the Washington University School of Medicine in St. Louis, MO and the founder and co-director of the Lupus Clinic.
02:47 - Dr. Vibeke Strand is an adult rheumatologist and a member of the faculty at Stanford University Division of Immunology / Rheumatology, as well as a consultant in new product development in rheumatology.
03:32 - Dr. Jeff Sparks is an adult rheumatologist at Brigham and Women’s Hospital and Harvard Medical School.
04:22 - The idea of the AiArthritis Talk Show is to bring stakeholders to the table for a roundtable discussion, not to conduct interviews.
07:46 - The American College of Rheumatology put out clinical guidance on COVID-19 vaccinations which suggests that all rheumatic patients should be vaccinated for COVID-19 and that all medications rheumatic patients take should be continued with very few exceptions (listed in the document) because controlled disease and avoidance of flares is better for the patient when receiving the vaccine.
10:32 - Some patients are stuck in a misinformation limbo where they were told not to get the vaccine by their doctor before the ACR guidance was put out, but they have not heard that the information has changed.
11:00 - Have you seen any hesitancy among rheumatologists to recommend patients receive the COVID-19 vaccine?
11:18 - Dr. Kim has not seen any of his colleagues in St. Louis tell patients not to get the vaccine, but he thinks they may be in a privileged bubble because of their proximity to the medical school.
12:05 - Rheumatologists normally have control over whether their patients receive a vaccine, but with the COVID-19 vaccine they may not even be consulted by their patients in making the decision. Dr. Sparks says most of his patients seem eager to get the vaccine.
12:53 - Patients are reaching out to their rheumatologists about when they will be able to receive the vaccine, but most states are not prioritizing rheumatic patients for vaccination which causes frustration for both patients and their physicians.
13:19 - Dr. Strand thinks that the reliance on Telehealth appointments may also be limiting the amount of information patients are getting from their rheumatologists.
13:47 - Social media is the source of news for many people, which is a blessing and a curse because it opens up access to lots of information - including misinformation.
14:24 - The weather has also caused a lot of delays in vaccine access for many patients in the US.
15:17 - What if my second dose of the vaccine is delayed beyond the due date?
16:32 - Because of the way the immune system functions, it should be fine to get the second dose a week or even two weeks late.
16:54 - If I have to miss my second dose appointment, can I just make an appointment at a different location and get a different vaccine for my second dose?
17:24 - The vaccines are shipped in paired doses, and your second dose is usually reserved for you. You need to receive your reserved dose so that it doesn’t go to waste. Also there have been no tests on patients receiving one dose each of two different vaccines. It’s very important to receive the second dose that was reserved for you.
18:20 - Data from Israel is showing that vaccinated patients may not be carrying or shedding the virus at the same rate as unvaccinated people.
18:56 - Will my rheumatologist be checking in some way to see if I have an antibody response to the vaccine?
19:10 - No, because that information is not clinically actionable. We can’t do anything with that information, so there’s no reason to subject the patient to a test. We also can’t order the ingredients from the vaccine that would be necessary to test the patient for the presence of antibodies.
20:05 - The antibody response is also not the only thing that determines if a vaccine works for a patient. So even if we could test it, the information would not tell us the whole picture.
21:18 - A lot of the hesitancy Dr. Kim has seen has been coming from patients, either because they are concerned that the vaccine will destabilize their disease; they feel like social distancing is working fine for them; or they want to wait for more information before getting the vaccine.
23:36 - Kelly reports that many patients are claiming that the Pfizer vaccine has fewer side-effects than the Moderna vaccine, which is not true.
24:35 - It is important that patients get both doses from the same type of vaccine (2 doses of Pfizer, 2 doses of Moderna, etc.).
24:56 - Because of the lack of available vaccine doses, patients may not be able to choose which brand of vaccine they get. Is this a problem?
25:18 - There are many reasons patients may be hesitant to get the vaccine, and doctors need to try to understand those reasons in order to help those patients.
26:40 - Patients around the world have access to different vaccines than people here in the US. Eventually American people may have access to more than just the mRNA vaccines, and that may impact patient choice as well.
27:12 - The two mRNA vaccines - Moderna and Pfizer - behave very similarly. Some people have reactions to the vaccine, particularly the second dose, from either brand.
27:25 - Having allergies is not likely to cause you to have an anaphylactic reaction to the vaccine because the agent that they believe is causing those reactions is a common ingredient in household substances and foods.
27:54 - It’s extremely unlikely (less than 1% chance) that you will have an anaphylactic reaction to the vaccine.
28:38 - It is very easy to view the ingredients for the vaccines and compare the list to your known allergies.
29:05 - Having a bad vaccine reaction in the past does not mean you will have a bad reaction to the COVID-19 vaccine, and you’re much more likely to have a bad reaction to the COVID-19 virus than to the vaccine.
29:25 - The mRNA vaccines are very safe.
29:44 - Does it make sense to try and wait for a specific brand vaccine with a 95% effectiveness rate instead of one with an 85% effectiveness rate?
30:18 - Most vaccines have effectiveness rates of 50-70%, so all of the COVID-19 vaccines have efficacy rates higher than that.
31:12 - Those numbers are based on antibody responses, which don’t even reflect the entire response to the vaccine. All of the vaccines approved by the FDA are effective and safe.
31:59 - The vaccines are so hard to get right now that if you are offered a COVID-19 vaccine, you should get it regardless of what brand it is.
34:08 - Is there anything else our listeners should know about getting the vaccine?
34:28 - Many people with rheumatic diseases have autoantibodies, so people were worried that an mRNA vaccine could stimulate an autoantibody response. The data with COVID-19 and the vaccine suggests that it’s still much safer for rheumatic patients to get the vaccine than to get the virus. It doesn’t matter if you have autoantibodies. We still want you to have the vaccine so that you don’t get the virus.
35:39 - The phase III clinical trials for both Moderna and Pfizer were the largest clinical trials for any vaccine ever. The results should reassure all of us that these vaccines are safe and effective.
36:44 - We will still need to wear masks after receiving the vaccination until the pandemic ends.
37:14 - How can we as a community assess barriers and benefits of getting the vaccine? How does that impact shared decision-making?
38:25 - Patients need to discuss 3 things with their rheumies: what are your specific risks for getting the infection? Do you have comorbidities that elevate your risk for complications from the virus? What is your risk for infecting others? All of these questions should impact your decision to get the vaccine.
39:50 - The patient’s specific concerns should really influence the conversation the physician is having. Someone who is eager to get the vaccine should be having a very different discussion compared to someone who is concerned about getting the vaccine.
40:23 - The ACR guidance document states clearly that the benefits outweigh the risks, and all rheumatic patients should get the vaccine.
41:16 - Many patients just want to hear about the basics of the vaccine, but not all of their physicians have all of the information to have informed discussions with their patients.
42:10 - What happens if some rheumatologists refuse to endorse the ACR guidelines and continue to discourage their patients from receiving the vaccine? Should patients still pursue shared decision-making with a doctor who is not complying with ACR?
42:33 - Now that there is an official guidance document from ACR, hopefully everyone can utilize that to support those conversations.
43:22 - Are the ACR guidelines useful for rheumatologists in other countries that may not even be using the mRNA vaccine?
43:47 - The ACR guidelines are very relevant because the guidance is drawn from studying previous vaccines, not the mRNA vaccines specifically. It doesn’t matter whether it’s an mRNA vaccine or where the doctor is located, the science is the same.
45:15 - There are discordances among guidances issued by different organizations. The National Psoriasis Foundation recommended that most patients should continue biologic or oral therapy when receiving their vaccines, but they did not offer any specifics. The ACR guidance did offer specific guidance for psoriatic arthritis patients about biologic usage and the vaccine.
47:04 - We don’t really know the answer for sure about what patients should do with regard to their medications and the COVID-19 vaccine, but the vaccine is so effective that whatever you decide with your doctor should be fine.
48:39 - We don’t have any lab test to measure the efficacy of the vaccine for an individual patient because we don’t know what antibody titer would convey protection against the virus.
50:00 - There are already a large population of people who reject vaccines outright, and then they see news stories that focus on misleading interpretations of data. The ACR guidelines offer clarity and impartial information to patients trying to juggle multiple opinions and information sources to decide what is best for themselves and their families.
52:23 - What can we do to get the ACR guidance information in front of the patients who need it to make the best decision for their health?
53:27 - Disenfranchised patients in particular may not want to hear from their physicians at all. That’s one benefit to operating the vaccination clinics through community health centers.
56:30 - How can patients get involved with clinical research about COVID-19 vaccines?
56:43 - Dr. Kim is expecting to report preliminary data in 2-3 weeks on the efficacy of COVID-19 vaccine response in patients on immunosuppressants.
1:00:10 - Rheumatic disease patients and parents of juvenile patients can participate in a survey with the COVID-19 Global Rheumatology Alliance to help researchers understand the impact of the pandemic on rheumatic disease patients.
1:01:33 - Tiffany thanks Kelly, Dr. Kim, Dr. Strand, and Dr. Sparks for participating in this important episode.
1:02:29 - We want to hear from you on social media, especially Twitter where the rheumatologists are active. We are @IFAiArthritis on all platforms. How can we get more information to patients about the vaccine and the ACR guidance to facilitate shared decision-making?
1:02:50 - Visit aiarthritis.org/rheumyrounds to participate in a survey about your opinions on all of the topics we discussed today.
1:03:13 - If you are a practicing rheumatologist and would like to get involved in a future episode of Rheumy Rounds, there is a link where you can sign up to do that, and we would love to have your input.
1:03:32 - Find Dr. Kim on Twitter @AlHKim where he recommends that all patients receive these safe and effective vaccines.
1:04:07 - Find Dr. Sparks on Twitter @ JeffSparks where he encourages patients to discuss any concerns they may have about the vaccine with their doctor so that they will feel comfortable getting this safe and effective vaccine.
1:04:32 - Dr. Strand wants to remind everyone that the vaccinations are safe and very effective, and this is our best chance at going back to living life as we should be.
1:05:46 - Visit aiarthritis.org/vaccinations to get your questions about vaccines addressed personally.
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