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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 Apr 02, 2023
Sunday Apr 02, 2023
Have you ever experienced the frustration of not being able to get a diagnosis, or worse, receiving the wrong one?
In this episode, our co-hosts Tiffany, Kelly, and Kerry, dive into what it is to be a mystery patient. In addition, they each share their personal experiences of being a mystery patient, and the challenges they experienced with delayed diagnosis.
They discuss the emotional toll that comes with being a mystery patient, including the frustration, anxiety, and uncertainty that can linger for months or even years. We also explore the physical consequences of delayed diagnosis and the correct treatment.In addition, our co-hosts explore the importance of sharing our mystery patient stories to learn from one another, help ease the burden of being a mystery patient and provide support to others along the journey.
Whether you're a mystery patient or have had similar experiences, this episode sheds light on the lessons learned, triumphs, and struggles that many face and why your story matters. Share your story with us today at aiarthritis.org/mysterypatient and help us all learn more about AiArthritis diseases.
Episode Highlights:
- What is a mystery patient?
- Kerry, Kelly and Tiffany share their own personal stories of their mystery patient journey and the impacts of a delayed diagnosis.
- The importance of sharing your diagnosis journey story so we can learn from each other and understand how to help others along in this process.
- The mental and physical toll that occurs with a delayed diagnosis
- Is it ethical to treat Undifferentiated Diseases if it can be treated other ways?
- How sharing your story can help uncover the best questions to ask during your doctor visits
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: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
- 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
- Kelly Conway is a speech-language pathologist, author/blogger, and a patient advocate. She has been living with autoimmune arthritis since age 14 but wasn’t formally diagnosed until age 32. That diagnosis has changed more than 5 times over the past 18 years. Through social media, she connected with fellow patients and cofounded the International Foundation for Autoimmune and Autoinflammatory arthritis. Kelly believes in the power of the patient voice and sharing our stories to raise awareness, education, and advocacy.
- Connect with Kelly:
- Facebook: @Lolabellaquin
- Twitter: @Lolabellaquin
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 Mar 05, 2023
Sunday Mar 05, 2023
Have you or your family been affected by juvenile arthritis? On this episode, Tiffany is joined by Rochelle Lentini, CEO and President of Purple Playas Foundation, who have united with other specialists and families to identify additional tips to improve communication.
During this episode, Rochelle and Tiffany discuss this new collaboration project between AiArthritis and Purple Playas Foundation, along with Rheumatology Nurses Society and Novartis, to create discussion aids and question guidance to help families improve communication with all the professionals they meet along the way.
Tiffany and Rochelle also provide suggestions that can offer some hope to families struggling to get answers. If you would like to share your story, insights, or recommendations to help us create these new tools to help those navigating through their Juvenile Arthritis journey, please fill sign up using our Google form at www.aiarthritis.org/jiacommunication
Episode Highlights:
- Rochelle shares the difficult, frustrating, and lengthy diagnosis process for her son’s Juvenile Arthritis
- Common symptoms to look out for with Juvenile Arthritis
- What types of doctors you might see along the diagnosis process
- Importance of symptom tracking with your children to provide as much details and data to your physician as possible
- Tips on best questions to ask your doctor when seeking a diagnosis
- How to improve patient-doctor communication for better understanding on both sides
- How to communicate with your child and give them a voice when interacting with their doctor
- Purple Playas and AiArthritis are coming together to collaborate on new resource tools for parents and children seeking a Juvenile Arthritis diagnosis
- How to get involved in the new resource tool and share your insights and recommendations for improvements
Thank you to Novartis for supporting the Journey Improvement Aids (JIAs) for Juvenile Idiopathic Arthritis (JIA) - Detection, Diagnosis, Treatment project.
Our Co-Hosts:
- Tiffany is the CEO of the 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
- Rochelle Lentini, M.Ed. is the CEO/President of the Purple Playas Foundation and an early childhood education national consultant/trainer. She has RA and her son has juvenile arthritis, hypogammaglobulinemia, and other overlapping conditions. Rochelle has over 40 years of experience working with children with disabilities and their families and is a nationally recognized speaker. Her passions include family-centered support, inclusion, and inspiring hope for kids with chronic illnesses.
Connect with Rochelle:
- Facebook : @PurplePlayas
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!
Monday Feb 06, 2023
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:
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
- 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
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:
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
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
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 Dec 04, 2022
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:
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
- 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
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!
Saturday Nov 05, 2022
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
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:
- Facebook: @TiffanyAiArthritis
- Twitter: @TiffWRobertson
- LinkedIn: @TiffanyWestrichRobertson
- 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
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 Oct 02, 2022
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
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 Sep 04, 2022
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.
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 Aug 07, 2022
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
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!
Sunday Jul 03, 2022
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.
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!