AiArthritis Voices 360 Talk Show

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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

Monday Feb 06, 2023

Episode 82: AUTO + Autoinflammatory Arthritis: Diagnosis, Please!

Monday Feb 06, 2023

Join us for this episode where the co-hosts, Tiffany and Leila, share their personal journeys of being diagnosed with AiArthritis diseases. Tune in to hear how their journey of being diagnosed and misdiagnosed and the lessons they learned throughout the process.

We also delve into the exciting new resource tool being developed by AiArthritis, which helps patients navigate the process of seeking a diagnosis, understanding symptoms, and asking the right questions of their doctors. Plus, we invite other patients to share their stories and provide insights for those just starting their Auto + inflammatory arthritis journey. Join us for an informative and uplifting conversation on Auto + inflammatory arthritis diseases.

If you would like to share your story, insights or recommendations to help improve our new tool, please fill out the Google form on www.aiarthritis.org/diseases

Episode Highlights:

Leila and Tiffany share their different stories of being diagnosed with their diseases
Importance of resources for auto + arthritis diseases for patients to compare their symptoms to and hear other patients stories
How to best be supported on the journey of discovering what your disease may be when you show first signs of symptoms
What questions are recommended to ask your doctor when searching for a diagnosis
List of different symptoms you may experience with auto or arthritis diseases
Best advice for patients seeking AiArthritis diagnosis

Links Mentioned:

Come share your stories for the new AiArthritis Ebook : The Good, The Bad & The Ugly : AiArthritis.org/gbu

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.

Connect with Tiffany:

Leila is the Health Education and Engagement Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Syndrome. She is passionate about inclusion and diversity in health education and meeting individuals where they are at in order to learn in a way that resonates with them. Leila is on social media as @LupusLifestyle.Lei sharing bits and pieces about her life with lupus and connecting with others. Connect with her on Instagram or TikTok.

Connect with Leila:

Instagram: @lupuslifestyle.lei

LinkedIn: www.linkedin.com/in/leila-lagandaon

Facebook: @leilaaiarthritis

YouTube: LupusLifestyle.Lei

TikTok: @lupuslifestyle.lei

Donate to Support the Show: https://www.aiarthritis.org/donate

Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

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!

Sunday Jan 01, 2023

Episode 81 RheumyRounds: The Good, The Bad & The Ugly Pt. 2- Improving Office Visit Communication

Sunday Jan 01, 2023

Welcome to part 2 of the Rheumy Rounds episode where we bring Rheumatologists and patients to the table. During this episode, we are going to be discussing the good, the bad and the ugly in office visits. In an effort to improve office visits and patient experiences, we are creating an Ebook with a collection of all your stories.

During this episode, Deb Constein and Tiffany Westrich-Robertson share their experiences as patients and Dr. Al Kim shares his perspective as a physician. In addition, we highlight the importance of active listening and communication during office visits. Join us on this episode to hear more insights, research and information on best practices to improve your experiences as a doctor or patients.

If you are interested in sharing your patient experience for our new Ebook, send your stories over to aiarthritis.org/gbu

Episode Highlights:

AiArthritis is creating an Ebook with a collection of patient stories of the good, the bad and the ugly to study these interactions and help improve patient care.
Deb, Tiffany and Dr. Al Kim share their experiences with undiagnosed and misdiagnosis and patient care
Importance of active listening as a physician so you can work together to find a proper diagnosis or treatment
How best to set expectations as a physician for treatment options
Importance of doctors managing their emotional reserve when seeing patients in the office daily
Best practices at building better doctor-patient communication in the office

Links Mentioned:

Come share your stories for the new AiArthritis Ebook : The Good, The Bad & The Ugly : AiArthritis.org/gbu

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.

Connect with Tiffany:

Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.

Connect with Deb:

Facebook: @deb.majcherconstien
Instagram: @debconstien
Twitter: @debconstien

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.

Connect with Dr. Al Kim

Instagram: @washulupusclinic

Twitter : @AlHKim

Donate to Support the Show: https://www.aiarthritis.org/donate

Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

Sunday Dec 04, 2022

Episode 80 RheumyRounds: The Good, the Bad and the Ugly - Improving Office Communication

Sunday Dec 04, 2022

Welcome to another Rheumy Rounds episode where we bring Rheumatologists and patients to the table. During this episode, we are going to be discussing the good, the bad and the ugly in office visits. In an effort to improve office visits and patient experiences, we will be collecting YOUR stories and examples of Good, Bad, and just downright Ugly office visits. We will turn this collection into an eBook and AiArthritis (patients) and rheumatologists will read your submissions and work together to create recommendations to improve office communications (citing YOUR examples!)

During this episode, Kerry Wong and Tiffany Westrich-Robertson share their experiences as patients and Dr. Lisa Zickuhr shares her perspective as a physician. Together on this episode, we highlight the importance of communication, compassion and openness in bettering patient-doctor relationships.

IF YOU ARE A PATIENT/FAMILY OR RHEUMATOLOGIST, PLEASE SUBMIT YOUR STORIES FOR THIS PROJECT AT https://www.aiarthritis.org/gbu

Episode Highlights:

AiArthritis is creating an Ebook with a collection of patient stories of the good, the bad and the ugly to study these interactions and help improve patient care.
Kerry, Tiffany and Dr. Lisa Zickuhr share their experiences with undiagnosed and misdiagnosis and patient care
How a doctor can approach a patient who they are unable to diagnosis in the beginning stages
Patients need to be receptive to a physician's message as much as a physician needs to be empathetic to the patient
The importance of knowing what to do next or monitor for if you’re tests come back negative so the patient doesn’t feel left without any direction
Information sharing between the doctor and patient can be the difference between a bad and good interaction even without diagnosis

Links Mentioned:

Come share your stories for the new AiArthritis Ebook : The Good, The Bad & The Ugly : AiArthritis.org/gbu

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.

Connect with Tiffany:

Kerry was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities

Connect with Kerry:

Instagram: @buttahflyk

Twitter: @buttahflyk

Facebook: @floatlikeabuttahfly

Dr. Lisa Zickuhr

Dr. Zickuhr is a rheumatologist and clinician educator who devotes half of her time to caring for patients with autoimmune rheumatic diseases and half to educating physicians in training. Her clinical interests lie in treating patients with systemic lupus erythematosus and other related conditions. She also cares for patients using telemedicine and is interested in the best ways to teach health care professionals how to communicate with and examine patients virtually.

Connect with Dr. Lisa Zickuhr:

Instagram: @washumedicine

Twitter : @WUSTLmed

Donate to Support the Show: https://www.aiarthritis.org/donate

Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

Saturday Nov 05, 2022

Episode 79 : Patient Leadership In Research

Saturday Nov 05, 2022

Patient involvement in research is key to developing knowledge and understanding around the many AiArthritis diseases. As a person living with AiArthritis diseases, there are lots of ways you can get involved with patient research such as clinical trials, surveys, focus groups, data banks and more. You can even elevate your participation through conference attendance and being part of the research team!

In this month’s episode, we join our co-hosts Tiffany, Deb, Kerry and Eileen, all living with AiArthritis diseases, as they discuss the importance of patient involvement in research. During this episode, the co-hosts will share their own experiences in patient research, how inclusion criteria impacts the ability to participate, what factors to consider before joining and how to find patient research opportunities. Join us in this episode as we discuss clinical trials and start the important conversation of patient research.

Episode Highlights:

Patient’s Experiences in Clinical Trials
Inclusion & Exclusion Criteria For Clinical Trials
Why it is important for patients to be involved in research
How do you find patient research opportunities
What to consider before joining patient research
Types of patient research to participate in

Links Mentioned:

www.aiarthritis.org/clinicaltrials

www.clinicaltrials.gov

Meet Our Co-Hosts:

Tiffany Westrich-Robertson 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.

Connect with Tiffany:

Deb Constien is a medically retired Registered Dietitian and a Representative for the AiArthritis with Rheumatoid Arthritis. Deb is also on the Advisory Council for WREN- Wisconsin Research Education Network and a Patient Family Advisor- PFA on an International PCORI research study for ACP- Advanced Care Planning.

Connect with Deb:

Facebook: @deb.majcherconstien
Instagram: @debconstien
Twitter: @debconstien

Eileen Davidson is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others. When not advocating she is writing about her experience with arthritis through Creaky Joints, Healthline or Chronic Eileen.

Connect with Eileen:

Twitter: @Chroniceileen

Kerry Wong was eventually diagnosed with Fibromyalgia, Sarcoidosis, Small Fiber Neuropathy, Rheumatoid Arthritis, and Sjögren's Syndrome (to name a few). Kerry is a volunteer at New York State Advocacy Chair, Ambassador with Arthritis Foundation, and Patient Ambassador/Peer Mentor with Foundation for Sarcoidosis Research. Kerry does all she can to support the arthritis, sarcoidosis, chronic illness, and rare disease communities

Connect with Kerry:

Instagram: @buttahflyk
Twitter: @buttahflyk
Facebook: @floatlikeabuttahfly

Donate to Support the Show: https://www.aiarthritis.org/donate

Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

Sunday Oct 02, 2022

Ep 78 Diversity Equity Inclusion and Access

Sunday Oct 02, 2022

This episode is a Step 2 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process.

DEIA : Diversity, Equity, Inclusion, and Accessibility. Each of these elements that affect patients daily should be considered when thinking about patient diagnosis, physician care, treatment plans, research, lifestyle choices, and societal inclusion.

In this month’s episode, we join Tiffany from AiArthritis, Estela Mata from Looms 4 Lupus, and Charis Hill - disability activist, as we are going to be discussing this topic. Each co-host has their own story to share, their experience with DEIA, and how it has impacted their patient journey as well as our community. Join us as we just scratch the surface in this important, but necessary, topic.

Episode Highlights :

What is DEIA?
How diversity affects representation in clinical data and can lead to a delayed diagnosis
How equity and the accessibility patients may have to physicians, treatment types, providers, household income and lifestyle choices affects potential treatment and care plans
The importance of including diverse groups in clinical data
What social determinants should be considered when determining approach to care
AiArthritis’ patient lead research program
How healthcare biases contribute to patient disparities
How to increase digital accessibility for patients

Resources Mentioned In This Episode:

‘About Damn Time’: Disabilities Get Represented at Emmys and Beyond https://sarcoidosisnews.com/columns/about-damn-time-disabilities-get-represented-emmy-awards-disability-representation/
Subconscious vs Unconscious: The Complete Comparison Learn about Unconscious vs Subconscious mind: definition, synonym. How to manage minds Subconsciously and Unconsciously: https://diversity.social/unconscious-vs-subconscious/
Physicians and Implicit Bias: How Doctors May Unwittingly Perpetuate Health Care Disparities: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3797360/#:~:text=All%20of%20society%20is%20susceptible,ethnicity%2C%20gender%20or%20other%20characteristics
Race, Ethnicity, and Disparities in Rheumatology Educational Materials https://onlinelibrary.wiley.com/doi/10.1002/acr.24602?elq_cid=26233150&elq_mid=64639

Meet Our Co-Hosts & Guests:

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.

Connect with Tiffany:

Facebook: @TiffanyAiArthritis
Twitter: @TiffWRobertson
LinkedIn: @TiffanyWestrichRobertson

Estela Mata is the President and co-founder of Looms for Lupus, a non-profit organization that provides Lupus, Fibromyalgia and Mental Health Awareness, advocacy, and support to those living with these conditions, their loved ones, and caregivers. In 2011 she co-founded Looms for Lupus when her sister almost lost her life to Immune thrombocytopenia and Lupus; she is alive today because she advocated for herself. Estela has supported her sister and her passion to help others has evolved to “iLOOMinating”, Engaging, Empowering and Supporting the community as a whole to take control of their overall healthcare.

Connect with Estela :

Facebook:@estelamata @looms4lupus
Instagram: @estela_mata @looms4lupus
Twitter: @estelamata @looms4lupus
YouTube: Looms4Lupus
TikTok: estela.mata

Charis Hill, who uses they/them pronouns, is a disability activist, writer, speaker and model living with many conditions including Axial Spondyloarthritis (axSpA), Ehlers Danlos Syndrome (EDS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. Charis’ multi-tiered work uses narrative engagement to advance social justice for multiply-marginalized disabled people. Charis’ story is regularly featured internationally in media outlets and in the documentary: "Becoming Incurable." In addition to Charis' leadership on patient advocacy organization committees and regular speaking engagements about health and disability, they boast bylines in HealthCentral, Healthline, and Business Insider; including cover stories for Arthritis Today and Spondylitis Plus magazine; and they have been awarded by the Arthritis Foundation and Spondylitis Association of America for their work on legislative advocacy for state and federal policy efforts.

Connect with Charis:

Twitter: @beingcharisblog

Donate to Support the Show: https://www.aiarthritis.org/donate

Sign up for our Monthly AiArthritis Voices 360 Talk Show newsletter! HERE

Sunday Sep 04, 2022

Episode 77: Biosimilars - What patients need to know

Sunday Sep 04, 2022

This episode is a Step 2 - an initial visit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process.

As more treatment options are moving towards Biosimilars, many questions are being raised by patients. What are Biosimilars? Are they safe and effective? Are there downsides? Upsides? What are doctors' opinions on Biosimilars? What should I do if I am switched to a Biosimilar?

These are all questions that are at the forefront of our minds when living with AiArthritis diseases. This month, we invited patient advocates, doctors and coalition leaders to join the conversation to discuss and answer the many questions someone living with AiArthritis may have. Join us this month as we break down Biosimilars, share opinions, concerns, research, and resources so patients can better understand Biosimilars and what their availability means for their treatment plan.

Episode Highlights :

What are Biosimilars?
The main concerns patients have with switching to Biosimilars
What is Non-medical switching? Automatic Substitution? Interchangeability?
Biosimilars are safe and effective and are recommended for patients to use if it does not interrupt continuity of care
Regulations and the physicians involvement with switching patients to biosimilars
First steps to take if you are asked to switch to a Biosimilar
Research and resources to learn more about Biosimilars

Resources Mentioned In This Episode:

- AiArthritis Biosimilars Hotline: https://www.aiarthritis.org/biosimilars
- Biosimilars Patient Advocacy Toolkit: Global Colon Cancer Association in partnership with the World Patients Alliance/Global Colon Cancer Association
- In addition to the toolkit mentioned, check out this website to watch all the recordings from the two day webinar series! LearnBiosimilars.org

ASBM/GaBI Webinar: KEY SUCCESS FACTORS FOR BIOSIMILAR UPTAKE IN EU and US - Good overview of US and EU markets:

- Key Factors for Successful Uptake of Biosimilars: Europe and The US : https://www.youtube.com/watch?v=R5DlKPpMjDk
- Non-Medical Switching of Biologicals/Biosimilars : Canada, Europe and The US : https://www.youtube.com/watch?v=A5nJkCJM32M
Non-Medical Switching : Physician Perspectives : https://www.youtube.com/watch?v=R9ULgUQEcZ0
GaBI Whitepaper on Canadian Substitution Policies: http://gabi-journal.net/a-critical-review-of-substitution-policy-for-biosimilars-in-canada.html
GaBI Whitepaper on US Biosimilar Market Catching Up to Europe: http://gabi-journal.net/a-white-paper-us-biosimilars-market-on-pace-with-europe.html
GaBI Whitepaper on Lessons from the European Biosimilar Markets: http://gabi-journal.net/policy-recommendations-for-a-sustainable-biosimilars-market-lessons-from-europe.html

Meet Our Co-Hosts & Guests:

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.

Connect with Tiffany:

Facebook: @tiffanyAiArthritis
Twitter: @TiffWRobertson
LinkedIn: @TiffanyWestrichRobertson

Ralph McKibbin, MD, FACP, FACG, AGAF is the Chairman of Alliance for Safe Biologic Medicines. Dr. McKibbin is a practicing gastroenterologist at Blair Gastroenterology Associates in Altoona, PA. He is past president of both the Pennsylvania Society of Gastroenterology and of the Digestive Disease National Coalition (DDNC). He sits on the Member Advisory Panel of the Pennsylvania Medical Society; and is a member of the Pennsylvania State Cancer Control Consortium. Dr. McKibbin has written extensively on the issues of non-medical switching and insurance industry utilization management techniques including step therapy and copay accumulator adjustments.

Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance, now the leading US based national patient advocacy organization dedicated to colon cancer. Mr. Spiegel, an attorney, besides being a co-founder of the organization and longtime board member of the Alliance became CEO in January of 2008 and he ran the CCA for nearly 5 years, before undertaking his next venture, the Global Colon Cancer Association (GCCA).In addition to his work in the colon cancer community, Spiegel is an active advocate for health care policies both in the US and now worldwide. He is a co-founder and currently serves on the steering committee of the Alliance for Safe Biologic Medicines (ASBM). He is on the Board of Directors, and in December 2014 was elected to Chair, of the Digestive Disease National Coalition (DDNC),a founding member of the Coalition to Increase Clinical Trial Participation and in May of 2016 he began a three year term as a member of the Board of Directors of the International Alliance of Patient Organizations (IAPO) where he chaired the fundraising committee. Spiegel has won multiple awards for his work in patient advocacy.

Michael Reilly, Executive Director of Alliance for Safe Biologic Medicines, has served as the executive director of ASBM since its inception in 2010. He has more than a decade of experience in the federal government developing and implementing healthcare policy. Mr. Reilly served as the associate deputy secretary at the U.S. Department of Health and Human Services (HHS) from 2005-2008 responsible for policy development and implementation, as well as regulatory oversight for issues involving CMS and the FDA. In addition to serving as the associate deputy secretary, Mr. Reilly served as a senior advisor to the assistant secretary for public affairs and the assistant secretary for planning and evaluation at HHS from 2002-2005. Mr. Reilly has been quoted in a series of FDA publications and co-authored many articles on biosimilars for the Generics and Biosimilars Initiative Journal. He has also presented to health regulators worldwide, including the Australian TGA, Health Canada and the World Health Organization (WHO).

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.

JOIN TODAY!

Sunday Aug 07, 2022

Episode 76: COVID in 2022 - Evolving Concerns, Questions, and Opinions

Sunday Aug 07, 2022

This episode is a Step 5 - a revisit to the table - as outlined in our 6 Step Patient-Led Problem Solving Process

Over the last couple of years, the world has watched as COVID-19 has evolved into variants that differ slightly from the original virus. We’ve seen vaccinations and boosters work, yet we also know that new strains are somewhat resistant to high level protection. COVID treatments have emerged to help those who are immunocompromised - like those with AiArthritis diseases who are on immunosuppressive treatments - but can we access them and, if so, how?

We've been on quite an emotional and physical rollercoaster, and it’s not over. Should we be concerned about “Long COVID” and “Post COVID”? What is research showing about COVID in our rheumatology population? Join Tiffany, Patrice, and Deb - all persons living with AiArthritis diseases and who also all have experienced COVID recently - as they share the latest research, guidance, and their own personal patient-guided opinions - in regards to the world of COVID in 2022.

Episode Highlights :

What are Long COVID and Post COVID and how either can affect someone with AiArthritis diseases?
The key factors that increase risk of getting COVID
Evolution of COVID and the relevance of current COVID research
The first steps to take if you are someone with AiArthritis diseases and diagnosed with COVID
How to access medication to prevent COVID for those who are immunocompromised
The impact self care and your mental health can have on developing post COVID

Resources Mentioned In This Episode:

Exploring the Link Between COVID-19 and Autoimmunity Can Help Patients With Long-Haul COVID: https://www.rheumatologyadvisor.com/home/news/exploring-the-link-between-covid-19-and-autoimmunity-can-help-patients-with-long-haul-covid/
Long COVID is associated with poor mental health in patients with rheumatic disease: results from a 14-month longitudinal study: https://academic.oup.com/rheumatology/article/61/Supplement_1/keac133.074/6573114
COVID-19 Outcomes Similar in Patients With and Without Immune-Mediated Inflammatory Diseases: https://www.rheumatologyadvisor.com/home/conference-highlights/eular-2022-coverage/covid-19-outcomes-similar-in-patients-with-and-without-immune-mediated-inflammatory-diseases/
Still testing positive after day 10? How to decide when to end your COVID isolation : https://www.npr.org/sections/health-shots/2022/06/30/1108615724/positive-test-isolation
The EULAR 2022 Debate: Will COVID-19 have a long-term impact on rheumatology practice? : https://rheumatology.medicinematters.com/eular-2022/covid-19/debate-long-term-impact/23124564
Post-COVID-19 Tachycardia Syndrome: A Distinct Phenotype of Post-Acute COVID-19 Syndrome : https://www.ncbi.nlm.nih.gov/pmc/articles/PMC8356730/
Risk Factors for “Long Haul” COVID-19 in Rheumatology Outpatients in New York City : https://acrabstracts.org/abstract/risk-factors-for-long-haul-covid-19-in-rheumatology-outpatients-in-new-york-city/
COVID-19 in people with rheumatic diseases: risks, outcomes, treatment considerations: https://www.nature.com/articles/s41584-022-00755-x
Coronavirus FAQ: Biden had a Paxlovid rebound. Is that common? What's it all about?: https://www.npr.org/sections/goatsandsoda/2022/05/20/1099176613/coronavirus-faq-i-took-paxlovid-i-felt-better-then-symptoms-rebounded-whats-up
Long COVID is associated with poor mental health in patients with rheumatic disease: results from a 14-month longitudinal study : https://academic.oup.com/rheumatology/article/61/Supplement_1/keac133.074/6573114

Shout Outs:

Dr. Al Kim:

Website: https://profiles.wustl.edu/en/persons/alfred-kim
Twitter: @alhkim

Meet Our Co-Hosts:

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.

Connect with Tiffany:

Facebook: @tiffanyAiArthritis
Twitter: @TiffWTobertson
LinkedIn: @TiffanyWestrichRobertson

Eileen is a rheumatoid arthritis patient advocate from Vancouver Canada. She volunteers with the Arthritis Research Canada patient advisory board and the Canadian Institute of Health Research - Institute of Musculoskeletal Health and Arthritis patient engagement research ambassador, among others.

Connect With Eileen:

Instagram: @chroniceileen
Twitter: @chroniceileen

Patrice was diagnosed with Polymyalgia Rheumatica. Patrice has been in remission off and on during these last 11 years. Patrice also has had several comorbidities: severe hearing loss which resulted in her now wearing hearing aids, a Baker's Cyst, a vein ablation, plantar fasciitis, pseudo gout, and she also has osteopenia. Patrice has been a volunteer with AiArthritis for over 2 years and has been co-host and a host for the podcast several times. Patrice went to EULAR virtually with AiArthritis in 2020 and 2021 and attended the virtual ACR conference in 2021 with AiArthritis.

Connect with Patrice:

Facebook : @PatriceJohnson

Patient Voices and All Other Stakeholders - Join our AiArthritis Voices Program and Connect to Opportunities to Have Your Voice Counted

JOIN TODAY!

Sunday Jul 03, 2022

Episode 75: The Whole Picture: Holistic, Personalized Therapy

Sunday Jul 03, 2022

This episode is a Step 2 - put the topic on the table for the 1st time - in our 6 Step Patient-Led Problem Solving Process

In this episode Tiffany, Deb, and Bridget talk about personalized therapy, or complimentary, non-pharmacologic options, that are being researched and added to new recommendations for full disease management.

We often talk about the importance of Precision Medicine (which involves finding the best pharmacologic treatment for each person’s individual needs), but as we, as patients, identify what works best for our unique needs, we have to consider all options (both pharmaceutical and non-pharmaceutical). Just as with our biologics and other disease modifying treatments - where one works for one person and not the other - we need to think about alternative therapies the same way. For example, just because you “tried diet”, did you try all the diets?

We all need to find our own right combination of therapy - but what does that look like to you? Then we also need access to that option, which can be challenging, but together - with AiArthritis - we can fight to make access a reality!

*All main episodes that air on the 1st Sunday of each month are either Step 2 in our 6 step problem solving process (first time the topic is on the table) OR a Step 5, which is a revisit to the table. In a Step 2, we are putting a topic on the table for the first time to open conversation - and continue break out conversations (360its) to further explore what is most important to patients. Make sure your voice is counted!

Show Notes: Episode 75 – “The Whole Picture: Holistic, Personalized Therapy”

00:36 – Tiffany welcomes listeners.

01:05 - Tiffany is joined today by AiArthritis Voices 360 recurring co-hosts Bridget and Deb.

01:15 - Deb Constien was diagnosed with Rheumatoid Arthritis at the age of 13.

01:50 - Bridget Serrett has multiple autoimmune diseases and genetic conditions.

02:49 - Today’s topic is personalized, complementary, non-pharmacologic therapies.

03:50 - In order to manage a systemic, whole-body disease, we need holistic treatment options.

05:36 - Deb is a dietitian, although she is currently medically retired.

07:00 - Deb did not have access to complementary therapies when she was younger because they are expensive and not covered by insurance.

07:41 - Deb does not have any inflammatory triggers, so she did not find relief from any particular diet.

09:09 - Always tell your doctor if you are taking any supplements because they need to know anything you are taking to manage your medications.

09:21 - Bridget has tried every complementary therapy she could find.

09:38 - She also has found that most people do not have access to quality complementary therapies due to prohibitive costs.

10:47 - Tiffany has always been interested in complementary therapies, especially exercise.

13:30 - There is an access barrier for most patients to the recommended complementary therapies because most are not covered by insurance or national healthcare systems.

14:28. - Data drives access, but the voices of patients about their need for access are also. Important to eliminating barriers to these therapies.

15:21 - Tiffany explains clinical practice guidelines.

16:28 - Clinical practice guidelines provide justification for access to insurance companies and national health programs.

17:07 - Deb is on the panel for the American College of Rheumatology to develop clinical practice guidelines for holistic, complementary therapies.

17:15 - Deb and Tiffany explain the ACR panel process for developing clinical guidelines.

23:53 - Many people have a limited amount of covered physical therapy sessions per year, which can lead to difficult choices about how to prioritize health needs.

26:35 - Personalized treatments are unique to the individual, so what works for one patient may not work for another.

29:01 - The elimination diet requires a lot of discipline and consistency to even find out if it works for someone.

30:52 - Access is important, and having the ability to find the combination of therapies that work for a patient is critical to successful treatment.

32:10 - Tiffany discusses the AiArthritis initiative in partnership with FORWARD National Databank for Rheumatic Diseases to collect patient information and conduct research to try and improve early detection / intervention and patient individuality as it relates to precision medicine and personalized therapies.

35:39 - Even Dr. Al Kim who is very invested in holistic guidelines does not spend much time during patient appointments on complementary therapies because the subject is currently very nebulous and inaccessible.

37:18 - There is some concern that unethical actors may take advantage of vulnerable patients when we incorporate providers that are not part of the traditional medical field.

40:17 - Chronic pain is getting its own code in the healthcare coding system.

40:43 - Tiffany explains the ICD-11 coding system and how this will help patients.

42:33 - Deb attended a EULAR session called “Not Another Pill: Integrative Pain Management Approaches” at the 2022 EULAR Conference in June.

43:40 - The Biopsychosocial Model is the gold standard for addressing chronic pain and includes a requirement that providers believe their patients and value them.

47:23 - Being dismissed by doctors causes significant delays in diagnosis and access to treatments, which contributes directly to poorer patient outcomes.

49:23 - Having a code for chronic pain may help eliminate barriers to treatment options that result from doctors being afraid their licenses will be in jeopardy with government regulating authorities for prescribing controlled substances too often.

50:51 - When patients go to a doctor who doesn’t believe them it can cause PTSD within the aiarthritis patient community.

52:24 - Sometimes when patients believe they are receiving treatments in blind placebo trials, they report improvement even though they are not really receiving any medication, which is called the placebo effect.

52:41 - Researchers wonder if the placebo effect could help uncover a mind-body connection that could help treat chronic pain.

53:15 - For more information on the mind-body connection research, check out our YouTube channel for a video on this topic.

53:55 - Complementary therapies are necessary because we need options for people who want to use fewer or no pharmacologic treatments.

55:40 - We need to hear from you on this topic! Email us at podcast@aiarthritis.org or find us on social media @IFAiArthritis on all platforms.

56:03 - Visit our website (aiarthritisvoices.org) to join our AiArthritis Voices program.

58:20 - For more information on medical cannabis or to get involved in advocating for legal access to medical cannabis, you can connect with Bridget on Facebook @cprcofcolorado (new website coming soon).

1:00:38 - To continue this conversation, donate to support the show, or for information on any of our initiatives, please visit us @ aiarthritis.org.

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Sunday Jun 05, 2022

Episode 74: EveryONE’s Voice ’Precisely’ Matters

Sunday Jun 05, 2022

This is a Step 5 Episode*

In this episode, Tiffany, CEO of AiArthritis, is joined by Catherine Ames, from the Young Patients’ Autoimmune Research & Empowerment Alliance, both persons living with AiArthritis diseases and both who attended the 16th Annual Personalized Medicine Conference in May 2022. Precision Medicine (PM) may currently be in the cancer space, but it’s quickly moving into the autoimmune/autoinflammatory space and there are some things they want you to know. What is it? Why is it important to understand and what can you do to make sure you can benefit most from it as it enters our space?

They talk about its impact on prevention (yes, we said it), early detection, diagnosis, and even matching treatments based on genetic profiles and biomarkers (blood, tissues, for example). Also, PM may be a solution to capping the high cost of healthcare, which means it’s as much of a research issue as a public policy issue.

*All main episodes that air on the 1st Sunday of each month are either Step 2 in our 6 step problem solving process (first time the topic is on the table) OR a Step 5, which is a revisit to the table. In a Step 5, we are ready to take action to solve a problem (create a resource, ask to join a project, etc.)

Show Notes: Episode 74 – “EveryONE’s Voice Precisely Matters”

00:52 – Tiffany welcomes listeners.

01:12 - Tiffany is a patient living with non-radiographic axial spondyloarthritis.

01:32 - Tiffany is joined by Catherine Ames, a college student living with Lupus.

04:10 - Catherine is here today to represent the Young Patients’ Autoimmune Research & Empowerment Alliance which works to include patients age 16-23 in medical research.

08:00 - Catherine and Tiffany met at a conference on Personalized (Precision) Medicine.

08:28 - AiArthritis distinguishes between Personalized Medicine and Precision Medicine because Personalized Medicine is more about patient preference and Precision Medicine is based on biomarkers.

10:01 - The conference they attended was largely dedicated to treatment of cancer more so than treatment of autoimmune disease because cancer treatment really spawned the field of Precision Medicine based on genetic sequencing of excised tumors.

13:07 - AiArthritis and AREA are at the forefront of Precision Medicine research in the autoimmune arena because most experts don’t anticipate serious breakthroughs in the immunology sphere with regard to Precision Medicine until 2025 or later.

15:05 - The keynote speaker of the conference talked about the importance of teaching the FDA and other regulatory agencies about innovative research.

17:08 - Early intervention with Precision Medicine could reduce the risk of comorbidities and increase the odds of achieving remission.

18:30 - Precision Medicine is intended to be expanded beyond cancer to other spheres within medical care, but there are access issues within the current healthcare system, especially in the United States.

19:23 - Precision Medicine has the potential to decrease healthcare costs in any system by intervening early to avoid patients developing complicated and expensive conditions.

23:20 - One example of Precision Medicine applications in AiArthritis is the use of biomarkers within RA to predict more aggressive forms of the disease.

24:10 - The reality is that AiArthritis diseases require expensive treatments that impose a significant cost burden on all healthcare systems, but only a minority of patients will respond to any specific treatment.

26:20 - The current practice of trial and error of drugs that have never even been tested in a clinical setting on a specific subgroup of autoimmune patients is wasteful and inefficient.

30:47 - AiArthritis encourages patients to get involved in clinical research by participating in the FORWARD National Databank or via other means.

31:27 - Visit AiArthritis.org/research for more information on how you can get involved in any of our research efforts.

33:33 - The concept of Precision Medicine sounds wonderful, but many patients are facing seemingly insurmountable barriers to access to care that may make them reluctant to participate in data collection efforts that might help move the field along.

38:16 - High costs of healthcare are driving access issues within all healthcare systems, so Precision Medicine should eventually - by way of reducing costs - increase access for all people.

45:18 - If patients could find treatments that better matched their specific conditions, they could improve their quality of life even if their disease is too advanced for remission to be possible.

46:00 - Tiffany and Catherine discuss pharmacogenetics.

49:43 - Pharmacogenetics has the potential to help match patients with the right pharmaceutical therapy based on their genome.

51:12 - Pharmacogenetics also has potential to anticipate drug-related toxicity before a patient develops an adverse reaction.

54:08 - Visit AiArthritis.org/research or aiarthritis.org/advocacy to get involved in promoting Precision Medicine.

55:01 - You can find Catherine @ChronicallyCatherine on social media or email her at chronicallycatherine@gmail.com.

55:35 - Find Young Patients’ Area @yp_area on instagram or email them at youngpatientsarea@gmail.com.

56:29 - Tiffany thanks Catherine for her contributions to today’s episode.

57:03 - Tiffany invites listeners to participate in any of the ensuing 360its following this episode.

58:12 - If you have something to say about today’s episode, email us at podcast@aiarthritis.org or submit an anonymous comment at aiarthritis.org/rant.

58:56 - We are @IFAiArthritis on all social media platforms.

59:10 - Stay tuned for our brand new talk show website that will be premiering soon.

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Sunday May 01, 2022

Episode 73: ”Arthritis” Awareness - It’s Complicated!

Sunday May 01, 2022

In this revisit to the table (Step 5 in our problem-solving process), Tiffany, Katie, Effie, Eileen, and Kerry discuss the many layers around the word “arthritis” including: 1) Misunderstandings around the word that can lead to delays in diagnosis, family and friend judgements, and the different type associated with “AUTO” diseases; and 2) Complexities that exist when trying to identify the AiArthritis from other potential comorbidities (Osteoarthritis, bursitis, enthesitis) and how clarity about this could help with detection, access to the right treatments, and overall better health outcomes.

This conversation takes many turns, all which address issues identified from lived patient experience. Why is differentiating arthritis types important? How many of us referenced family history to expedite diagnosis? How does public, family, and even doctor misunderstanding of our diseases play into diagnosis and exploring potential comorbidities? How accurate is the literature in regards to arthritis prevalence in comparison to what patients report to be true? They even started brainstorming the development of a new tool that could help the public, patients, and health providers better understand the layers of our diseases as well improve communication and overall disease journeys.

Now it’s YOUR turn to weigh in! There’s a lot to talk about, join us ‘at the table’ so, together, we can change the stories of tomorrow! Submit your comments here, at podcast@aiarthritis.org, on our social platforms at Facebook, Instagram, Twitter, or LinkedIn @IFAiArthritis.

Show Notes:

- 00:53 Tiffany (CEO, non-radiographic axial spondylitis) introduces the show and co-hosts, Katie (Programs & Communications Manager, rheumatoid arthritis), Eileen (“Chronic Eileen” rheumatoid arthritis), Effie (“Rising Above RA”, rheumatoid arthritis), and Kerry (“Float Like a Buttahfly”, sarcoidosis).
- 3:13 Tiffany officially welcomes Elieen and Kerry as the newest recurring Co-Hosts!
- 3:37 Explains a new addition to the show - the “360its!”, where any topic or comment from the episode is eligible to spin off into different conversations in any communication format (facebook live, twitter,
- 4:37 Topic is around the word arthritis, as a Step 5 (revisit to the table) issue, because in the US it’s Arthritis Awareness Month and May 20th is World AUTOimmune & AUTOinflammatory Arthritis Day
- 6:35 Co-hosts start the conversation by answering the question, “Why do YOU think the type of arthritis associated with our diseases - and differentiating it from other types - is so important?” All co-hosts share their stories and perspectives.
- 11:17 In the stories shared, the co-hosts outline a journey from “What’s wrong with me?” to “Misunderstandings” to “public education” and “doctor education” and “overlap of types of arthritis (also Osteoarthritis) or other comorbidities.” If we (patients, public, families, doctors) better understood arthritis and the types we could improve detection, referrals, diagnosis and, in turn, improve quality of life, increase rates of remission, and lessen unnecessary disability. This can lead to better overall healthcare and improved costs for healthcare systems.
- 12:52 Tiffany opens the conversation to discuss anyone’s experience with relatives having our diseases. Did anyone say, “Did you have a history of autoimmune/autoinflammatory disease in your family and, if so, did anyone say to you when figuring out what was going on with you, ‘Hey, this person has XYZ, maybe you have something in that family?” They continue discussing this and determine in their cases the connection between family history and detection/diagnosis was not common. This is an opportunity to discuss further because family history and communication about it could expedite diagnosis.
- 17:18 Kerry puts this perspective on the table - Not all families talk about things like illness, so in those cases knowing family history is hard. But given we know AiArthritis diseases are part genetic, this could be a key factor that could either lead to quicker diagnosis, or prolong diagnosis.
  - 18:16 Kerry - Talking about the statement “It’s all in your head” - “Once I had something visible - rash on my legs, swelling - I could say ‘I’m not making this up!” Bloodwork was fairly normal except a positive test for autoimmune thyroid, which led to a sign of diagnosis. But it took the visible plus some type of autoimmune direction in bloodwork to get there.
- Most agree, they only realized other family members had something similar after diagnosis. Could this be in part also because it’s not understood by families that ANY of out 100+ “AUTO” diseases counts as family history?
- Tiffany explains the importance also of knowing family history, as newer research is moving towards prevention - or at least catching the disease very early - based on certain biomarkers + known environmental triggers + family history.
- 21: 12 Conversation continues about family history when it comes to the doctor visit (not asked). Often this leads back to the patient trying to push testing and googling what they have.
- 22:37 Group starts discussing delay in diagnosis journeys, including overlap of symptoms and the arthritic component, and how important the right diagnosis matters.
  - A lot of delay in diagnosis for Kerry came from the doctors not understanding so self advocacy became necessary to help them figure it out.
  - When you have a rare disease, less knowledge is often present and, therefore, more self advocacy necessary.
- 28:48 Effie revisits the topic of family history and how culture and heritage can impact conversation (“We don’t talk about family illness.”). Or, in her case, as immigrants, a lot wasn’t documented. This has, in part, encouraged her to start sharing her story to help others have those ah-ha moments.
- 31:11 There are different kinds of arthritis and some of us have more than one, which can lead to confusion in diagnosis (“You’re too young to have arthritis”, “You’re too old to have RA”) and family misunderstandings (“oh I have that too, it’s not that bad”). They discuss why it’s important for patients to know which type they have - or if they have more than one type. Also, how do we differentiate the systemic systems (part of our disease or comorbidity?)
  - How does it overlap or is it separate? Is there a way to treat one differently than another and, if so, what should I know? How do I identify where my pain is coming from and what am I doing to trigger this pain - did my meds stop working or is this something new? Also, since our diseases are systemic and affect organs, too - that plays into this as well.

39:05 This is a Step 5 episode, which means we have discussed these topics enough over the last year, including in this episode, to be at a point where we can head into Step 6 - which is creating a solution. In this case, a resource to help with identifying AUTO + Arthritis (and potential comorbidities) so we can improve detection, diagnosis, and disease management. Things to consider in developing this tool:

- - Name your pain. What kind of pain do I have? (joint, enthesitis, non-joint, fibro pain, bursitis pain?) Where is it located? (Symptom chart)
  - What disease do I have? How can this resource be used to share with doctor?
  - Make it patient-led, then doctors review.
  - Potential comorbidities
  - Include building vocabulary and considerate of families/juveniles
- 42:50 Group discusses why this tool is also important - often doctors will not connect the dots on their own. Kerry gives an example of a doctor considering pituitary gland involvement because, “That could cover many varied issues.” It’s THAT line of thinking, “What could cover many varied issues?” that doctors need to consider.
- 44:04 “Those with sarcoidosis are thought to have lung involvement so if that’s missing as a first symptom it may be missed.”
  - The prevalence of arthritis, and what doctors believe is the correct percentage, may differ from patient-reported prevalence. They give examples of Sarcoidosis. It's thought that only 30% have arthritis, but Kerry hasn’t met one person without it. Recently in Still’s Disease (which includes systemic JIA), research has shown about 25% of patients do not have arthritis - especially as a first symptom. Yet the diagnosis triangle for Still’s taught to doctors is look for arthritis, rash, high fevers.
  - Is arthritis part of the disease or a comorbidity?

49:45 Katie mentions pain evolves in perception and simply getting used to it over time (pain is normal). How does this play into pain reporting? How does measuring pain and personal tolerance and mindset play into this?

55:25 What if the arthritis isn’t so bad and it’s the AUTO features that dominate. How can we communicate this? The group also discusses the importance of not eliminating arthritis as a clinical component altogether if it is or was part of your disease. (It’s important for our tool. Is it earlier in their disease, later, a later comorbidity/OA developing?)
59:05 Tiffany wraps up the show, starting by inviting the audience to weigh in on the tool we started to brainstorm about in this episode. You can submit your ideas at podcast@aiarthritis.org, via messenger on social media @IFAiArthritis, social media posts about it.
1:01 Kerry, “Float Like a Buttahfly” can be found on Twitter and Instagram @ButtahflyK and on Facebook Float Like a Buttahfly; Effie Instagram and Twitter @RisingAboveRA and on YouTube RA and Myself, blog: RisingAboveRA.com; Eileen, “Chronic Eileen” can google this name and also writes for CreakyJoints, Healthline, and Arthritis Research Canada.
1:02:40 You can find AiArthritis at @IFAiArthritis on social media or on the web at aiarthritis.org/talkshow. While there please Tip the Team by giving a donation so we can continue providing this amazing resource!

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