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.