ACR on Air Podcast

In this episode, we explore malignant atrophic papulosis—also known as Degos disease—an extraordinarily rare microvascular disorder so uncommon that most clinicians will never see a single case. For decades, medical literature labeled it “uniformly fatal.” Our guest, Lee Shapiro, MD, encountered this reality when he began treating a rapidly deteriorating 16-year-old boy with no clear treatment path. Driven by urgency, he reached out to experts across the country, slowly piecing together clues that ultimately led to the first successful treatment of systemic Degos disease. Today, Dr. Shapiro is a leading advocate for patients, connecting a global community, promoting early recognition, and working tirelessly to expand access to life-saving therapies.

Learn more at The Degos Disease Foundation.

Lee Schulman Shapiro, MD – Lee Schulman Shapiro, MD, is a distinguished rheumatologist recognized for more than four decades of clinical care, research, and leadership in systemic sclerosis and Degos disease. Dr. Shapiro earned his BA magna cum laude in 1973 and his MD from Columbia University in 1977 before completing internal medicine training and a rheumatology fellowship at the University of Pittsburgh under Dr. Gerald Rodnan. Dr. Shapiro spent his career practicing and teaching in New York’s Capital Region, serving on the rheumatology staff of St. Peter’s Hospital, Albany Medical Center, and Saratoga Hospital, and ultimately becoming Professor of Medicine (Emeritus) at Albany Medical College and Director of its Scleroderma Clinic. A fellow of the American College of Rheumatology and American College of Physicians, he has authored numerous influential publications on systemic sclerosis, pulmonary hypertension, and Degos disease. He founded and serves as Chief Medical Officer of both the Ann Steffens Scleroderma Research Foundation and the Degos Disease Foundation, advancing clinical research and patient advocacy internationally. Widely honored—including the Scleroderma Foundation’s Distinguished Physician Lifetime Achievement Award and repeated Castle Connolly “Best Doctor” recognitions—Dr. Shapiro is regarded as a leading voice in rare disease research, interdisciplinary education, and compassionate patient-centered care.

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Once the prescription is written, pharmacists like Katherine McCarthy, PharmD, BCACP, step in—often becoming the steady guide patients rely on throughout their health journey. Specializing in the care of people with rheumatic diseases, Katherine tackles insurance barriers, supports patients through biosimilar transitions, and helps demystify complex medication regimens. Her work underscores just how pivotal pharmacists are in driving better outcomes in rheumatology.

Katherine McCarthy, PharmD, BCACP – Kate McCarthy, PharmD, BCACP, is a clinical pharmacist at the University of Rochester Medical Center. She completed her studies at Cornell University and pharmacy degree at Albany College of Pharmacy and Health Sciences, followed by an ambulatory care residency at the University of Rochester community pharmacy program. She serves both pediatric and adult rheumatology patients from the University of Rochester Specialty Pharmacy to help improve medication access, education, and engagement. Through collaborative drug therapy management, she helps guide medication therapy and adherence to biologic treatment.

She continues to expand pharmacist interest, education, and involvement in rheumatology as a resident preceptor, research mentor and board member, as well as authored various chapters within rheumatology textbooks, pharmacist continuing education in rheumatology, and ACR Medication Guides. She enjoys interprofessional collaboration with the ACR Practice Committee and multi-site collaboration and research with health-system specialty pharmacies nationally.

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This episode explores the evolving intersection of rheumatology and cognitive science, beginning with what initially drew researchers to investigate cognitive symptoms in patients with rheumatoid arthritis (RA). We discuss the prevalence and nature of patient-reported cognitive concerns, how these subjective complaints compare with objective neurocognitive testing, and what current studies reveal underlying inflammatory and neurobiological mechanisms. The conversation examines the cognitive effects of commonly used RA therapies, as well as modifiable contributors—including physical activity, sleep apnea, diet, and stress—that clinicians should assess in routine practice. We also consider when formal neuropsychological evaluation is warranted, how to counsel patients seeking to prevent cognitive decline, and the most pressing unanswered questions that remain in the field.

Patricia Katz, PhD – Patricia Katz, PhD, is Professor of Medicine and Health Policy at UCSF. She is a past Editor-in-Chief of Arthritis Care & Research and the current co-Editor-in-Chief of ACR Open Rheumatology. She has edited 3 volumes of Arthritis Care & Research in which outcome measures for rheumatology were reviewed, the most recent published in 2020. She received the ARHP Distinguished Scholar Award in 1997, the STAR Award in 2005, the ARHP Presidential Award in 2003 and 2010, the ARHP Lifetime Achievement Award in 2015, and ACR Excellence in Investigative Mentoring Award in 2019.

Her research has followed three main paths, studying the measurement of patient-centered outcomes, mental health issues in rheumatic diseases, and the impact of “lifestyle” factors such sleep, stress, and physical activity on clinical and patient-centered outcomes. She has authored more than 300 publications and has received grants from a variety of sources including the National Institutes of Health (NIH), the Department of Defense Lupus Program, and the Rheumatology Research Foundation (RRF). Most recently, she led the working group that made recommendations for the SLE patient-reported outcome quality measure, and she is working with the Lupus Research Alliance/Lupus ABC to foster greater integration of patient-reported outcomes into lupus clinical trials.

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In this episode, we explore what happens when clinicians look beyond the prescription pad and begin listening more deeply to what their patients have lost. This isn’t a conversation about rejecting medications but about expanding the tools we use to foster healing. We discuss the concept of disenfranchised grief—the often-unspoken losses that accompany chronic illness—the intricate links between depression and inflammation, and the transformative power of helping patients heal in ways that no pill alone can achieve.

This episode was sponsored by Pfizer.

Barbara Slusher, MSW, PA-C, DFAAPA – Barbara Slusher, MSW, PA-C, DFAAPA, is a Physician Associate with Hope Health, a federally qualified health center serving rural communities in Manning, South Carolina. She earned her PA degree from the University of North Texas Health Science Center, College of Osteopathic Medicine, and holds a Master of Social Work from the University of Maryland, Baltimore.

Barbara integrates her background in social work with her medical training to provide whole-person care, recognizing that true health encompasses mental, emotional, and physical wellness. Her clinical career spans oncology, allergy/immunology, and rheumatology, with more than 19 years dedicated to improving the lives of patients with rheumatic and musculoskeletal diseases. In 2024, she became board certified in Lifestyle Medicine, underscoring her commitment to incorporating evidence-based lifestyle approaches into the management of chronic rheumatic disease.

She is a Distinguished Fellow of the American Academy of Physician Assistants (DFAAPA) and an active volunteer and past executive leader with the Association of Rheumatology Professionals. Barbara is passionate about servant leadership and remains dedicated to advancing both individual and community health.

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In this episode, we shine a light on Calcium Pyrophosphate Deposition Disease (CPPD)—a condition that has been hiding in plain sight for decades. Despite being common, painful, and prevalent in clinics everywhere, CPPD has long been misdiagnosed, undertreated, and under-researched. Our guest has been working to change that by uncovering the genetic and molecular underpinnings of the disease and exploring new ways to improve patient outcomes. We discuss what’s new and what’s next for CPPD, why it may be the most common inflammatory arthritis after age 60, how it overlaps with rheumatoid arthritis and osteoarthritis, and what emerging studies of biologics are revealing about its biology and untapped therapeutic potential.

This episode was sponsored by Pfizer.

Tristan Pascart, MD, PhD – Tristan Pascart, MD, PhD, is a French clinician and researcher in rheumatology. He is head of the rheumatology department of the Lille Catholic University hospitals and Professor of rheumatology at the Lille Catholic University medical school. His research focuses on crystal-induced arthropathies, mainly calcium pyrophosphate deposition (CPPD) disease and gout. His expertise particularly covers advanced diagnostic tools and imaging techniques for CPPD disease, and therapeutic aspects as he led the first clinical trial performed in acute CPP crystal arthritis (COLCHICORT trial). He was involved in the steering committee for the development of the 2023 ACR/EULAR classification criteria for CPPD disease.

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