Due largely to a really complex healthcare system, prescription drug affordability is a growing challenge in the United States. Good news! Efforts are happening RIGHT NOW by several government representatives to try and address it. But improvements are moving forward without asking patients what prescriptions THEY can or cannot afford - and they aren’t asking WHY this is.

In this 360it spin-off episode, AiArthritis CEO, Tiffany Westrich-Robertson, and Grassroots Advocacy Manager, Vanessa Lathan, discuss the importance of understanding “the patient why” and how YOU can share your experiences TODAY to help guide the solutions.

Drawing from new data in the Ensuring Access through Collaborative Health (EACH)/Patient Inclusion Council (PIC) Coalition Prescription Drug Affordability & Unaffordability Patient Experience Project, Tiffany and Vanessa explain that the reasons behind affordability vary and all people treated by high retail cost medications should continue to share their why. Then we can collect enough voices, find enough patterns, to guide the government on how to help us. t.

This broadcast highlights why patient voices must guide healthcare reform and how you can - and should - take part in the ongoing Patient Experience survey to ensure solutions reflect real experiences. If you’ve ever skipped or stretched medication, faced unexpected insurance barriers, or worried about paying for prescriptions, this episode highlights why your voice is essential in shaping solutions.

This effort is led by over 80 patient organizations and groups in the USA working together. Any diagnosis, any medication, it’s not autoimmune arthritis or autoinflammatory arthritis disease only.

Episode Highlights:

• Why affordability isn’t just about price, but also insurance design and access.
• What new survey results reveal about skipped doses, Medicare challenges, and reliance on financial assistance.
• Why including diverse patient voices is critical to building real solutions.
• How you can participate in the Patient Experience survey and join ongoing efforts to improve prescription drug affordability.

Participate in Patient Experience Survey here: https://bit.ly/PatientWhy

• Patient Lead Survey Results: https://eachpic.org/each-pic-releases-results-from-patient-led-survey-on-drug-affordability/
• Patient Experience Project and Link to the 10 Minute Survey: https://eachpic.org/patient-experience-project/
• PIC Voices: https://eachpic.org/pic-voices/
• Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org
• Donate to Support the Show: www.aiarthritis.org/donate

Follow AiArthritis on all social media platforms @IFAiArthritis

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

Connect with 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

Vanessa Lathan is the Grassroots Advocacy Manager at AiArthritis and a consultant with the Patient Inclusion Council, where she leads efforts in diversity, equity, inclusion, and accessibility. Living with Undifferentiated Connective Tissue Disease, she is passionate about advancing racial health equity and disability rights, with a focus on improving care for Black women with invisible illnesses.

CAR-T Therapy is one of the most talked about advances in autoimmune research today, offering new hope for people living with AiArthritis diseases such as lupus, myositis, scleroderma, and Sjögren’s. In this episode, co-hosts Leila P.L. Valete, AiArthritis Health Education Manager, and Tiffany Westrich-Robertson, CEO and Original Founder of AiArthritis, explain what CAR-T is, how it works, and why it matters.

They walk through the treatment process step by step from collecting a person’s own immune cells, to reprogramming them in a lab and reintroducing them so the immune system can reset. This episode highlights promising results from early clinical trials including patients reaching remission and stopping other medications, while also addressing safety, access, and what is still unknown.

Whether you’re a patient, caregiver, researcher, or advocate, this episode explains what’s happening in CAR-T research and why it could represent a major shift in how AiArthritis diseases are treated.

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

Episode Highlights:

• What CAR-T Therapy is and how it works with AiArthritis diseases
• Why B cells are an important target in conditions like lupus and Sjögren’s
• Early results from clinical trials showing remission and organ improvement
• Safety considerations for patients in CAR-T studies
• Who may qualify now through trials, and what wider access could look like in the future
• How to stay informed on CAR-T research

• Sign up for Go With Us! to Conferences program: www.aiarthritis.org/gowithus
• Sign up for the Research Database: www.aiarthritis.org/database
• Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org

Follow AiArthritis on all social media platforms @IFAiArthritis

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 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.

Connect with Leila:

Instagram: @lupus.lifestyle.lei

LinkedIn: https://www.linkedin.com/in/leila-pl-valete/

Facebook: @leilaaiarthritis

TikTok: @lupus.lifestyle.lei

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

In this follow-up episode, AiArthritis Health Education Manager Leila reflects on her personal pregnancy journey with lupus and Sjögren’s, while sharing key fertility and pregnancy insights from EULAR 2024.

She highlights emerging research and clinical recommendations on preconception planning, navigating medication decisions, and coordinating care between rheumatologists and high-risk OB-GYNs. Leila also offers practical tips based on her own experience from managing disease activity during pregnancy to advocating for your needs throughout the journey.

Join us on this episode if you’re actively planning for a family or simply want to understand how AiArthritis diseases can impact fertility and pregnancy.

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

Episode Highlights:

• Hear EULAR 2024 updates on fertility and pregnancy
• Learn what current guidelines say about safe medications for conception, pregnancy, and breastfeeding
• Understand the importance of low disease activity before and during pregnancy
• Hear Leila’s firsthand story of managing pregnancy with lupus and Sjögren’s
• Discover why early conversations with rheumatologists matter even if you’re not trying to conceive yet
• Explore the emotional and mental health side of pregnancy with chronic illness
• Get tips for building a supportive care team including maternal-fetal medicine specialists

• Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org

Follow AiArthritis on all social media platforms @IFAiArthritis

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 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.

AiArthritis is bringing you along for the journey as part of our Go With Us! Program, this time straight from the EULAR 2025 in Barcelona. In this episode, we’re spotlighting key research updates that matter most to patients living with AiArthritis diseases.

Our 'co hosts, Leila, Tiffany, Deb, and Eileen, are on the ground at EULAR, reporting back with fresh insights into patient-prioritized topics. You’ll hear how nutrition and microbiome research is shifting how we understand inflammation and autoimmune risk, why CAR T-cell therapy is creating buzz as a potential path to long-term remission, and what new research is saying about enthesitis in spondyloarthritis. Plus, learn more about the debate on the pros and cons of cannabis use for chronic pain management. This episode brings the conference experience straight to you with a focus on what it all means for real patients.

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

Episode Highlights:

• Insights from new research linking diet and gut health to autoimmune activity
• What CAR T-cell therapy could mean for the future of treatment
• A deeper look at enthesitis and how it’s being understood in spondyloarthritis
• How the medical community is reevaluating the use of cannabis in treatment plans.

• Go With Us! To EULAR 2025 YouTube Playlist: https://www.youtube.com/playlist?list=PLZW5ZyvNnYl3wsrI7usV495JH2OMfUdzN
• Have questions about this episode or topics you want to hear us bring to the table? Email us at podcast@aiarthritis.org

Follow AiArthritis on all social media platforms @IFAiArthritis

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 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.

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, Chronic Eileen or can be found being a mom to her son Jacob.

Tiffany Westrich-Robertson 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.

Deb Constien is a medically retired Registered Dietitian and a Representative for 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.

AiArthritis diseases can be difficult enough to manage—but what happens when the symptoms don’t fit neatly into a diagnosis? In this episode, AiArthritis Health Education Manager Leila shares her perspective on the “mystery patient” experience, those living with serious, ongoing symptoms but still searching for answers.

Leila revisits key conversations from past episodes and introduces new resources, including our updated Mystery Patient Guide and the AUTO + Inflammatory Arthritis = X or YZ Project, which explores lesser-known or overlapping conditions like IgG4-related disease (IgG4-RD). She also shares the powerful story of a real mystery patient navigating the challenges of being undiagnosed for years.

If you or someone you love is living in diagnostic limbo, this episode offers validation, education, and practical tools to help guide your journey and highlights why improving awareness and research for this often-overlooked community is so essential.

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

Episode Highlights:

• Learn why some patients remain undiagnosed for years and what defines a “mystery patient.”
• Hear a real patient story that illustrates the challenges of navigating misdiagnosis.
• Understand how overlapping conditions like IgG4-RD complicate the diagnostic process.
• Discover key takeaways from the IgG4-RD Educational Summit, including treatment updates.
• Explore tools and resources available to support those still searching for answers.

• Mystery Patient Guide: www.aiarthritis.org/undiagnosed
• Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp
• IgG4-RD Resource :https://igg4ward.org/education-and-resources
• Start Your Team for World AiArthritis Day: givebutter.com/aiarthritisday25
• World AiArthritis Day Information: www.aiarthritis.org/aiarthritisday

Follow AiArthritis on all social media platforms @IFAiArthritis

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

Connect with our Cohost:

Leila P.L. Valete is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus & Sjögren's. 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 Leila:

Tiktok: @Lupus.lifestyle.lei

Autoimmune diseases like lupus and Sjogren’s disease are often associated with joint pain, fatigue, and organ involvement, but their impact on the nervous system is less commonly discussed. In this episode, Dr. Julius Birnbaum, a leading expert in neuro-rheumatology, joins us to explore the neurological manifestations of these conditions and what patients need to know.

From brain fog and memory issues to more severe complications like neuropathy, Dr. Birnbaum explains how these diseases affect the brain and nerves, why symptoms can be challenging to diagnose, and the latest advancements in treatment.

If you or a loved one live with lupus or Sjogren’s and have experienced unexplained neurological symptoms, this episode provides clarity, validation, and expert insights on what to look for and how to advocate for proper care.

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

Episode Highlights:

• Understanding the link between autoimmune diseases and the nervous system.
• Common neurological symptoms in lupus and Sjogren’s
• Why neurological symptoms are often overlooked or misdiagnosed.
• The latest research and treatment approaches for managing neurological complications.
• How to advocate for proper testing and care if you suspect neurological involvement.

• Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp

Follow AiArthritis on all social media platforms @IFAiArthritis

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

Connect with our Cohost & Guest:

Dr. Julius Birnbaum is a distinguished rheumatologist with 20 years of experience and the only physician in the U.S. trained as an internist, neurologist, and rheumatologist. He completed his medical training at Columbia, Mount Sinai, Jacobi Medical Center, and Johns Hopkins, where he later pioneered a Neuro-Rheumatology Clinic to treat complex neurological complications of autoimmune diseases. Dr. Birnbaum has authored over 30 publications in prestigious medical journals and has been a featured speaker at national and international rheumatology conferences. Currently, he serves as Associate Professor of Rheumatology at the University of Pittsburgh Medical Center (UPMC) and Division Chief of Rheumatology at UPMC Mercy Hospital, where he continues to teach and mentor medical trainees. Outside of medicine, he enjoys sports like basketball, swimming, and running, which he shares with his wife and three children in Wexford, Pennsylvania.

Connect with Dr. Birnbaum:

Book: Living Well With Autoimmune Diseases: A Rheumatologist’s Guide to Taking Charge of Your Health - https://bit.ly/41XrpZR

Website: https://www.juliusbirnbaum.com/

Leila is the Health Education Manager at the International Foundation for AiArthritis. She is a person living with Lupus 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.

Connect with Leila:

Tiktok: @Lupuslifestyle.lei

Parenting is challenging, but adding a chronic illness like rheumatoid arthritis brings unique obstacles. In this episode, co-host Eileen shares her journey of raising a child while managing RA, from coping with fatigue and pain to adjusting expectations.

She’s joined by her 12-year-old son, Jacob, who offers his perspective on growing up with a parent who has a chronic illness. Together, they discuss the struggles, unexpected lessons, and ways they support each other. Whether you're a parent navigating chronic illness or looking to understand its impact on families, this episode offers insight, advice, and encouragement.

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

Episode Highlights:

• Eileen shares her journey of parenting with RA, from early diagnosis to raising a preteen.
• The biggest struggles of parenting with chronic illness, including fatigue, guilt, and daily challenges.
• Jacob’s perspective on having a parent with RA and how it has shaped his life.
• The unexpected positives—how chronic illness has taught Jacob responsibility, independence, and empathy.
• Practical tips for parents with chronic illness, including self-care, communication, and asking for help.

• Volunteer with AiArthritis : https://bit.ly/AiArthritisVolunteerApp

Connect with our Cohost:

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, Chronic Eileen or can be found being a mom to her son Jacob.

Connect with Eileen:

Twitter: @ChronicEileen

Follow AiArthritis on all social media platforms @IFAiArthritis

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