AiArthritis Voices 360 Talk Show

Ep 96: Social Wellness with an AiArthritis disease

In this episode, co-hosts Leila, Estela, and Kerry delve into the crucial topic of social wellness amidst living with AiArthritis disease. They explore the essence of social wellness, its significance and sharing personal insights on navigating social lives while managing health challenges. Join our co-hosts as they discuss both the supportive and challenging dynamics of maintaining an active social life with an AiArthritis disease and how online communities can positively impact social wellness. Drawing from community questions and experiences, they offer invaluable advice, practical tips, and thoughtful modifications to foster social fulfillment despite potential barriers. Tune in to learn how to prioritize social wellness in the face of chronic illness.

Episode Highlights: 

• Definition and exploration of social wellness, emphasizing its importance in maintaining overall well-being.
• How social wellness can negatively and positively affect your AiArthritis disease 
• Discussion on the cohosts' personal experiences with their social lives and how they navigate social interactions while managing their health conditions.
• Insights into the reactions of family and friends to the cohosts' social needs, highlighting both supportive and challenging aspects.
• How you can utilize technology to connect to your community to positively impact your social life. 
• Answering community questions and comments regarding social wellness by sharing practical advice, tips, and modifications for fostering social fulfillment despite potential barriers.

 

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

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

 

Connect with our Co-Hosts:

 

• Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Disease. 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 @Lupus.Lifestyle.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: @lupus.lifestyle.lei

     TikTok: @lupus.lifestyle.lei

 

• Kerry is a writer and patient advocate living with fibromyalgia, rheumatoid arthritis, sarcoidosis, Sjögren's syndrome, and small fiber neuropathy/dysautonomia (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. She is currently working on "Kaleidoscope," a collection of rare disease stories. 

 

Connect with Kerry:

    Instagram: @buttahflyk 

    Twitter: @buttahflyk 

    Facebook: @floatlikeabuttahfly 

    Website: http://bit.ly/floatlikeabuttahfly

 

 

• 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. 

 

Connect with Estela: 

      Instagram: @estela_mata @looms4lupus

    LinkedIn: @Estela Mata-Carcamo

 

 

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! 

 

Ep 95: Volunteering with AiArthritis

Curious about how volunteering with AiArthritis could transform your life and the lives of others?

 

In the latest episode of AiArthritis Voices 360 Talk Show as co-hosts Leila, Michael, Jenni, Deeanne, Patrice, and Deb share heartfelt stories of their journey into volunteering with AiArthritis. From personal experiences to the profound impact AiArthritis has had on their lives as patients, they delve into the transformative power of community support. Discover why volunteering is vital and how the AiArthritis community has become a lifeline, offering understanding, empathy, and empowerment. 

 

Join the conversation and learn how you too can make a difference by getting involved with AiArthritis. Find out more here: https://www.aiarthritis.org/volunteer

Episode Highlights: 

• Dive into the intriguing stories behind our volunteers' journey to AiArthritis.
• Hear how AiArthritis has reshaped lives and inspired resilience in our volunteers.
• Explore why volunteering is the key to driving progress for the AiArthritis organization and community.
• Discover the profound support and empowerment found within the AiArthritis community.
• Learn how you can make a difference and get involved with AiArthritis today.

 

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

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

 

Connect with our Co-Hosts:

 

• Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus Nephritis and Sjögren’s Disease. 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 @Lupus.Lifestyle.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: @lupus.lifestyle.lei

     TikTok: @lupus.lifestyle.lei

 

• Jen 

Connect with Jen: 

Podcast : My Spoonie Sisters

Instagram: @gracejully_jen

      @my_spoonie_sisters

 

 

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! 

 

Ep 94: Rheumy Rounds Rewind: Improving Doctor and Patient Communication During Office Visits

This is an AiArthritis Voices 360 REWIND, where we are bringing back the first RheumyRound episode from 2020 where we opened the conversation on improving doctor office visits! Also note - you will hear the acronym IFAA, which we used prior to using AiArthritis.

 

Join us as our co-hosts, Tiffany and Kelly, and guests, Dr. Kim and Jerik Leung, explore the important dynamic between patients and doctors in healthcare communication. Through insightful dialogue and shared experiences from both the patient and physician perspective, we uncover strategies to enhance mutual understanding, empowering patients to articulate their needs and doctors to listen attentively. Together, we champion the importance of empathy and effective communication in achieving accurate diagnoses and personalized treatment plans for those navigating AiArthritis diseases.

Episode Highlights: 

• Do patients and rheumatologists' goals and expectations during an office visit align? 
• The significance of effective patient-doctor communication in managing AiArthritis diseases
• Strategies for patients to articulate their concerns and needs during office visits
• Techniques for doctors to actively listen and engage with patients to improve diagnostic accuracy
• Shared experiences and insights from both patients and doctors on navigating communication challenges
• How doctors can integrate social determinants of a patient's health in the clinical setting 

• Related Episodes:

• RheumyRounds: PART ONE The Good, The Bad, and The Ugly - Improving Office Visit Communication: https://www.aiarthritis.org/talkshow-ep80

• RheumyRounds: PART TWO The Good, The Bad, & The Ugly - Improving Office Visit Communication : https://www.aiarthritis.org/talkshow-ep81

 

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

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

 

Meet Our Host:

 

• Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) 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

 

• 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:

Blog: www.asmyjointsturn.com.

 

 

Meet our Guests: 

 

• 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

 

• Jerik Leung doctoral student and Woodruff Fellow in the Behavioral, Social, and Health Education Sciences department at Emory University. His current research interests involve characterizing pathways linking structural social determinants of health with individual health outcomes in chronic disease. He is specifically interested in how structural factors shape how people living with chronic disease manage their conditions, interact with their health care providers, access care, and engage with their communities. Jerik is currently working with faculty advisor Dr. Cam Escoffery to evaluate the implementation of several epilepsy self-management programs. For his dissertation research, he intends to focus on issues relevant to people living with lupus.

 

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! 

Ep 93: Reproductive Health and AiArthritis Diseases

Welcome to AiArthritis Voices 360! In this episode, Leila, the Health Education Manager at AiArthritis, delves into the impact of AiArthritis diseases on reproductive health, sharing insights from the RNS and ACR 2023 conferences. Leila delves into the myriad challenges individuals encounter, including delayed puberty, heightened disease activity during menstrual cycles, and the heightened risks associated with unplanned pregnancies. Navigating the intricate landscape of family planning within the AiArthritis community, we discuss the significance of birth control methods and the impact of medications on fertility.

 

Drawing from personal experience with lupus, Leila discusses preserving fertility, assisted reproductive technologies, and navigating family planning. Join us on this episode to learn more about reproductive health with AiArthritis diseases and hear Leila’s personal experience with family planning! 

 

If you have questions or would like to share your own family planning story, please feel free to email Leila at Leila@AiArthritis.org.

Episode Highlights: 

• Explore the latest research insights on how AiArthritis diseases affect reproduction from the RNS and ACR 2023 conferences.
• Join Leila on a personal journey, navigating reproductive health with Lupus.
• Uncover challenges in family planning, from medication impacts to the significance of birth control in AiArthritis.
• Learn about medication effects on fertility and preservation strategies for those with AiArthritis.

 

Resources & Links:

• https://mothertobaby.org/
• http://lupuspregnancy.org/
• https://www.mamasfacingforward.com/
• https://www.graceandable.com/pages/chilliredcompressionglove
• RNS Go With Us video about Lupus and Pregnancy: https://youtu.be/tgeIW0pxF8M?feature=shared
• ACR Go With Us video about Reproductive Health: https://youtu.be/rYGs1fevQWU?feature=shared

 

• Related Episodes:

• Ep 11: Oh Mama! Pregnancy Planning with a Chronic Illness : https://www.aiarthritis.org/talkshow-ep11
• Ep 51: Oh Mama! Physical and Emotional Support Postpartum : https://www.aiarthritis.org/talkshow-ep51
• Ep 89: Surgery with an AiArthritis Disease : https://www.aiarthritis.org/talkshow-ep89 

Meet Our Host:

 

• Leila is the Health Education 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: @lupus.lifestyle.lei

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

      Facebook: @leilaaiarthritis

     TikTok: @lupus.lifestyle.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! 

#360it: Medicare Drug Price Negotiation: How Will it Affect Patient Access?

This episode is a 360it revisiting the topics put on the table during Episode 88 : Biosimilars - Interchangeability & Switching 2023

 

Join us in this breakout 360it from Episode 88 Biosimilars : Interchangeability & Switching 2023 as we dissect the Inflation Reduction Act (IRA) and its potential fallout on patient access to diverse treatment plans. Tracing the historical trajectory of the IRA, we uncover its role in price negotiations and the concerning shift in investments away from critical drugs tailored for specific diseases. This reallocation poses a tangible threat to the availability and diversity of treatments, including for those living with AiArthritis diseases. As we dive into the landscape of healthcare policy, the discussion emphasizes the pressing need for IRA improvements to consider the long term well-being of patients. Without these crucial enhancements, we will have a future with not only fewer innovative treatments but potentially less treatment options available. 

 

Join us in fighting for improvements to the IRA and patient involvement in treatment access.

 

Episode Highlights : 

• The history of Medicare Part D and its positive impact on healthcare
• What is the Inflation Reduction Act
• Why the IRA price negotiations are important to understand and how it will affect your treatment access 
• How healthcare R&D will be negatively impacted by the IRA price negotiations 
• Consequences to Patients of Drug Price-Setting Policies for patients
• How can patients get involved in the IRA price negotiations 
• How the IRA will disincentivize small molecule drugs and indications for treatment plans 

 

Resources Mentioned In This Episode:

• AiArthritis Biosimilars Hotline: https://www.aiarthritis.org/biosimilars 
• EMA - What Is A Biosimilar : https://www.ema.europa.eu/en/human-regulatory/overview/biosimilar-medicines-overview
• ASBM Statement on CMS drugs list announcement - https://safebiologics.org/medicare-price-negotiations-will-jeopardize-patient-access-to-new-medicines-result-in-worse-health-outcomes/
• ASBM webinar on IRA - https://safebiologics.org/july-26-webinar-on-ira-medicare-price-negotiations/
• An educational microsite for patients to learn more and read news articles -  www.IRAPatientInfo.org 

 

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

 

• Andrew Spiegel has nearly two decades of experience in the patient advocacy arena. Spiegel co-founded the Colorectal Cancer Alliance and was longtime board member of the Alliance became CEO in January of 2008 and 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).

 

• Charles M Clapton. Mr Clapton has nearly two decades of Capitol Hill experience, Notably, he served as health policy director for the Senate Committee on Health, Education, Labor, and Pensions, aiding the passage of the FDA Safety and Innovation Act (2012). He also played a pivotal role as a lead Republican staffer during the Affordable Care Act's congressional deliberations. He also impacted the House Ways & Means and Energy & Commerce Committees by shaping Medicare Part D prescription drug benefits, revise drug payment methods for Medicare Part B, and Medicaid changes in the Deficit Reduction Act of 2005.

 

• Thomas Barker represents healthcare providers and payers before the Centers for Medicare & Medicaid Services (CMS) and other components of the Department of Health and Human Services (HHS), Congress, and the Department of Labor. Tom is a former commissioner of the Medicaid and CHIP Payment and Access Commission (MACPAC), an advisory body that provides policy advice to Congress and the states on the Medicaid and CHIP programs. He is one of the authors of the firm's Medicaid & the Law blog, www.medicaidandthelaw.com, which highlights and explains current legal and policy issues in the Medicaid program.
  
  

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!

Ep 92 Breaking Research: Pharma & Non-Pharma 2023

Join us in this episode as co-hosts Tiffany and Deb share a recap of the 2023 ACR, American College of Rheumatology Conference and how these topics specifically affect AiArthritis diseases. Tiffany and Deb also share an insight into our program, “Go With Us!” to Conferences. The Go With Us program allows patients to attend these conferences in real time and get updates on different important or emerging topics for AiArthritis diseases.

 

In this episode, the co-hosts discuss some main conference topics, both pharma and non-pharma, such as how precision medicine can greatly benefit patients by matching correct treatment plans, how existing treatments are being retested for subgroups and how lifestyle can impact your treatment. Learn common questions doctors receive from patients about their day to day life such as exercise, stress and diet and their advice on how lifestyle modifications can also help to alleviate symptoms. Don’t miss this patient recap of the 2023 ACR conference! 

 

Resources & Links:

 

• To join the Go With Us program, click here: https://www.aiarthritis.org/conferences
• To learn how to volunteer with AiArthritis, check out our program here: https://www.aiarthritis.org/volunteer
• Come be apart of the AiArthritis Research Database here: https://www.aiarthritis.org/database
• To learn more about JIA project, click here: www.aiarthritis.org/JIAcommunication
• Nutrition Resource for Patients : www.tiny.ucsf.edu/rheumnutrition

Episode Highlights: 

• How lifestyle modifications such as exercise, stress and diet can help alleviate symptoms
• Understanding what parts of your immune system is being triggered by your disease for matching to the best treatments 
• Discussion on how early should early intervention be done for JIA 
• The importance of understanding precision medicine to improve matching the correct treatment plan for your AiArthritis disease.
• AiArthritis Go With Us program where you are able to attend the conferences such as ACR and EULAR in real time to understand current and emerging topics that relate to AiArthritis diseases. 
• New therapy option in the very beginning stages being discussed at ACR that has the potential to suppress and protect from autoimmune arthritis diseases. 
• Why supporting research is so important for the development of AiArthritis treatments

Meet Our Host:

 

• Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) 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

 

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!

Ep 91: AiArthritis Voices 360 REWIND - Distinction Between Autoimmune and Autoinflammatory diseases

This is an AiArthritis Voices 360 REWIND, where we are bringing back two short episodes that were recorded way back in 2019, because chances the topics are very important! Also note - you will hear the acronym IFAA, which we used prior to using AiArthritis.

 

The first segment revisits an episode where Tiffany is joined by Dr. Apostolos Kontzias to explore the distinction between autoimmune and autoinflammatory diseases. In the second segment Tiffany discusses the importance of differentiating between arthritis types to improve the misunderstandings that are associated with arthritis and, in turn, will help expedite detection. Join us in this episode discussing AiArthritis’s mission to improve awareness and understanding of these conditions. 

 

Episode Highlights: 

• Innate vs adaptive immunity 
• The difference between autoimmune and autoinflammatory diseases as well as the subcategories such as age and onset
• If patients do not have positive labs or biomarkers, it does not mean they do not have an autoimmune disease
• Listening to your patients is important because every patient is different.
• Importance of doctors and nurses understanding of the different types of arthritis diseases to increase early detection.

 

Meet Our Host:

 

• Tiffany is the CEO at AiArthritis (International Foundation for Autoimmune & Autoinflammatory Arthritis) 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

 

Meet Our Guest:

 

• Dr. Apostolos Kontzias is the Vice Director, Center of Autoinflammatory Diseases at Stony Brook University, Renaissance School of Medicine. Dr. Kontzias is one of the national and international experts in the field of autoinflammatory diseases/periodic fever syndromes. His subspecialty interest includes seronegative spondyloarthritis and Sjögren’s syndrome.

 

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! 

Ep 90: Why Won’t They Diagnose Me?

At AiArthritis, we represent those diagnosed, their care partners/support network, and the undiagnosed (often called the “Mystery Patients”). This episode is for those struggling to get diagnosed. Join co-hosts Tiffany, Kerry and Danielle as they share their personal diagnosis struggles and delve deep into the challenges many other patients face on their diagnosis journey. From navigating initial symptoms to facing dismissive healthcare providers due to 'normal' blood work, we're talking about common hurdles that delay diagnosis, then encouraging YOU to share your experiences and perspectives as well. Together, we will create a Patient-Led Guide to an AiArthritis Disease Diagnosis.  

 

There are life-altering consequences of not getting diagnosed early, including decreasing chances to achieve remission and increasing the likelihood of comorbidities (such as multiple AiArthritis and related diseases, heart disease, and even Alzheimer’s and dementia). The guide we create will help the undiagnosed recognize signs their diagnosis journey may be getting derailed and understand crucial questions to ask health professionals during pivotal visits. 

 

Share your story to help create a patient-led guide: https://bit.ly/undiagnosedadvice

 

Episode Highlights: 

• Explore the common struggles patients face while seeking a diagnosis, including being dismissed by doctors and misinterpreting 'normal' blood work.
• Hear unique stories from Danielle, Kerry, and Tiffany, revealing the emotional and physical toll of diagnosis delays.
• Discover how delayed diagnoses can lead to irreversible damage and additional health complications.
• Learn the value of patient advocacy and the importance of asking the right questions during doctor visits.
• Help us complete our initial Patient-Led Guide to an AiArthritis Disease Diagnosis! https://bit.ly/undiagnosedadvice

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: @TiffWRobertson
• LinkedIn: @TiffanyWestrichRobertson

 

• Kerry is a writer and patient advocate living with fibromyalgia, rheumatoid arthritis, sarcoidosis, Sjögren's syndrome, and small fiber neuropathy/dysautonomia (to name a few). As these conditions took their toll and she became less physically able, Kerry became empowered to use her voice to advocate for herself and for patients like her. She is currently working on "Kaleidoscope," a collection of rare disease stories. 

Connect with Kerry:

    Instagram: @buttahflyk 

    Twitter: @buttahflyk 

    Facebook: @floatlikeabuttahfly 

    Website: http://bit.ly/floatlikeabuttahfly

 

• Danielle is a career educator, wife, and mother of 3. She was diagnosed with Rheumatoid Arthritis and Primary Biliary Cholangitis after years of unproductive medical investigation. She is dedicated to educating fellow AiArthritis patients about the importance of liver health and metabolic testing. In her spare time, she also co-hosts a podcast with her husband and 10 year old daughter about the importance of film history for the next generation.

Connect with Danielle:

    Website: https://www.omnibusride.com/

    Email: 1in20000special@gmail.com

 

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! 

Ep 89: Surgery with an AiArthritis Disease

Tune in to the latest episode of AiArthritis Voices 360 Talk Show, where your co-hosts Leila, Deb, and Kerry candidly share their personal journeys of undergoing surgery while living with AiArthritis diseases. In this episode, the co-hosts delve into their surgical experiences, including the pivotal surgeries they've had due to their conditions. From Deb's journey triggered by a bunion removal to Kerry's hip replacement due to the complex interplay of autoimmune conditions or Leila’s gastric sleeve surgery due to weight gain from treatments, the trio reflects on the unexpected intersections of surgeries and AiArthritis diseases. 

 

They discuss the preparations they navigated before surgery, the challenges they faced with doctor clearances and insurance, and provide valuable insights for fellow AiArthritis patients, including the crucial questions to ask healthcare professionals. Listen in to gain a unique perspective on surgeries with AiArthritis diseases and discover firsthand the resilience and strength that arise from these experiences.

 

Share your questions here: info@aiarthritis.org

Episode Highlights: 

• What surgeries each co-host has had and whether they are related to their AiArthritis disease
• What preparation is required before surgeries with an AiArthritis disease
• What questions patients should ask their doctors to prepare for surgery
• Co-hosts share their recovery journey

Meet Our Co-Hosts:

 

• Leila is the Health Education 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

     TikTok: @lupuslifestyle.lei

 

• 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

 

• 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

 

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! 

 

Ep 88: Biosimilars - Interchangeability & Switching 2023

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

What do patients need to know about the upcoming changes to biosimilars and interchangeability in 2023? 

 

In this episode, Tiffany is joined by esteemed guest experts Michael Reilly, Dr. Ralph McKibbin and Andrew Spiegel to explore the difference between  interchangeability , automatic substitution, and non-medical switching. Gain valuable insights into how these differences impact patients not only in the USA but also on a global scale.

In addition, our guests discuss the latest proposed bills in the US regarding interchangeable biosimilars, offering expert perspectives on the legislative developments and their implications for patients and healthcare providers alike.

Join us on this episode as we explore the latest updates in interchangeable biosimilars and share ways to raise your voice against non-medical switching  of non-interchangeable biosimilars without physician involvement.

 

Episode Highlights : 

• What is the difference between Interchangeability, Automatic Substitution, and Non-Medical Switching?
• Latest proposed legislation regarding interchangeable biosimilars
• The importance of physician involvement in biosimilar substitution
• What is the chance of original biologic failure if you fail the biosimilar? (and other patient submitted questions)
• Updates on biosimilars advancements in the US and around the world 
• What are Automatic Substitution Laws?
• How patients can become involved in the fight against the new legislation proposed that would undermine the switching protections in state biosimilar substitution laws. 

 

Resources Mentioned In This Episode:

• AiArthritis Biosimilars Hotline: https://www.aiarthritis.org/biosimilars 
• EMA - What Is A Biosimilar : https://www.ema.europa.eu/en/human-regulatory/overview/biosimilar-medicines-overview
• Europe Interchangable: https://www.ema.europa.eu/en/news/biosimilar-medicines-can-be-interchanged 
• FDA Resources: https://www.youtube.com/watch?v=i0IJg511J5Q ; https://www.youtube.com/watch?v=ooP7djSgtBE 
• Video- Dr. McKibbin discusses survey findings and importance of interchangeability: https://youtu.be/R9ULgUQEcZ 
• Video: Dr. McKibbin presents a poster based on the 2021 US Physician Survey data https://youtu.be/mhL_EZsbSpE  also short and straightforward - the poster: https://safebiologics.org/wp-content/uploads/2022/07/DIA2022-Poster-FNL.pdf 
• ASBM Survey Findings: https://gabi-journal.net/us-prescribers-attitudes-and-perceptions-about-biosimilars.html  
• Link to All ASBM Surveys, including Australia, Canada, Europe, Latin America, US: https://safebiologics.org/surveys/ 

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 and was longtime board member of the Alliance became CEO in January of 2008 and 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).

 

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!