AiArthritis Voices 360 Talk Show

Remission is no longer an abstract idea for people living with AiArthritis diseases. Thanks to earlier diagnosis, better treatment options, and growing global awareness, more patients are reaching remission and staying there. In this episode of AiArthritis Voices 360, Health Education Manager Leila P. L. Valete sits down with Neil Betteridge of the Global Remission Coalition to explore what remission truly means and why it is becoming a realistic goal for many. Together they unpack how remission differs from basic disease control and why that distinction is so important for daily life. They also talk through the emotional and practical impact of reaching remission, the role of early action, and the barriers that still prevent many patients from accessing timely care. The conversation highlights what sustainable remission looks like in the real world and how better education, support, and policy attention can help more people get there. Whether you are newly diagnosed or years into your patient journey, this episode offers a grounded and hopeful look at the road to remission and the steps that can make a life-changing difference.   Episode Highlights: What remission really means and how it differs from basic disease control Why remission improves quality of life, mental health, and daily function Key factors that help patients reach remission including early diagnosis and timely treatment Common barriers patients face like limited access to specialists, treatment delays, and lack of information What it takes to sustain remission through monitoring, adherence, and patient support   Links & Resources Global Remissions resources: www.globalremission.org AiArthritis remission information: https://www.aiarthritis.org/remission Have questions about this episode or topics you want to hear us bring to the table? Email us at [email protected]  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: 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   Neil Betteridge developed juvenile arthritis at age three, an experience that shaped his lifelong commitment to advocating for people with chronic diseases. He has led major patient organizations in the UK and globally, including serving as CEO of Arthritis Care and now as Senior Director of the Global Alliance for Patient Access, where he also chairs the Global Remission Coalition. With decades of experience in public affairs and patient engagement, Neil has advised health ministers, worked with the Royal College of Physicians, and held key leadership roles in international networks such as the Global Alliance for Musculoskeletal Health and EULAR. His work continues to advance policy, access, and better outcomes for people living with chronic inflammatory conditions. Connect with Neil: Website: www.globalremission.org X/Twitter: https://x.com/Neil_Betteridge

Cannabis has come a long way since we last covered it in 2020. With more patients using CBD and medical cannabis to help manage chronic pain, inflammation, anxiety, and sleep issues, it is time for an important update. In this episode, AiArthritis Health Education Manager Leila P. L. Valete is joined by co-hosts and patient advocates Eileen Davidson and Bridget Seritt for a real conversation about what has changed, what we still need to learn, and what patients should know before trying cannabis for autoimmune and autoinflammatory arthritis. The hosts explore how research, attitudes, and medical discussions around cannabis have evolved. They share their own experiences using CBD and cannabis, discuss new findings from rheumatology research, and highlight the ongoing need for better access, safety education, and provider awareness. The conversation also looks at how stigma is shifting as more patients and clinicians see cannabis as a legitimate part of symptom management rather than a last resort. Whether you’re new to the topic or already using cannabis as part of your treatment, this episode offers clear guidance, personal insight, and a thoughtful look at its role in patient care.   Episode Highlights: How conversations around cannabis and CBD have evolved since 2020 What new research says about its role in managing pain, sleep, and mental health Patient experiences using cannabis alongside traditional treatments Benefits, risks, and the ongoing debate around medical versus self-directed use How access, education, and stigma continue to shape patient choices   Links & Resources Go With Us! to EULAR 2025: Should Doctors Prescribe Cannabis for Autoimmune Disease?: https://www.youtube.com/watch?v=iw-KJWbKpuo Have questions about this episode or topics you want to hear us bring to the table? Email us at [email protected]  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: 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: @Lupus.lifestyle.lei Instagram: @Lupus.lifestyle.lei   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 Instagram: @ChronicEileen Facebook: @ChronicEileen   Bridget Dandaraw-Seritt founded a patient based organization that advocates for access to compassionate care and provides community support. She’s a published author on therapeutic cannabis, presents at medical conferences, and is engaged in the policy making process. Connect with Bridget: Facebook: Advocates for Compassionate Therapy Now   

We have all had those moments where the healthcare system leaves us throwing up our hands and asking, WTH?! From outrageous medical bills and denied prescriptions to hours on the phone with insurance companies, people everywhere share the same frustrations. That is why AiArthritis launched the global #WTHellth?! campaign, a place to rant, connect, and turn stories into change. In this episode, Co-hosts Tiffany Westrich-Robertson and Ray Patnaude introduce the campaign and explain how your everyday frustrations with healthcare access, insurance, and prescription costs can be transformed into powerful patient experience data (PED). By collecting thousands of stories, WTHellth?! helps government leaders, policymakers, and insurers see the real barriers patients face. Whether you share your rant on social media with the hashtag #WTHellth?! or submit your story directly at www.wthellth.org, your voice matters. Together, we can turn frustration into action and make sure patients everywhere are part of the conversation about healthcare reform.   Episode Highlights: How to share your story and create impact with the #WTHellth?! campaign Common patient frustrations, from step therapy to unaffordable prescriptions How ranting together creates both emotional impact and usable patient experience data How collected stories will be used to drive healthcare reform and policy change Submit Your Patient Story: wthellth.org    Links & Resources Participate in Patient Experience Survey: https://bit.ly/PatientWhy  Have questions about this episode or topics you want to hear us bring to the table? Email us at [email protected]  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   Ray Patnaude is a patient advocacy leader with over a decade of experience advancing patient-centered health policy and education. Living with psoriatic arthritis, he brings authenticity and passion to his work, amplifying patient voices while developing innovative educational tools for advocacy organizations worldwide. As manager of AiArthritis’ Knowledge = Empowerment program and the #WTHellth?! campaign, he drives impactful initiatives that empower patients and shape meaningful health reform.  

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    Links & Resources 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 [email protected]  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   Links & Resources: 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 [email protected]  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