My Caregiver and Patient Journey: A Story of Complexities and Financial Burdens
Beth Gore, Executive Director of the Oley Foundation, shares the profound challenges she faces as a caregiver for her six adopted children, each with unique medical needs. Living in Tampa with her family, Beth’s journey highlights the emotional and financial strain that comes with managing complex health issues, especially for her son Manny. Despite her […]
Unseen Burdens: Financial Equity and Patient Advocacy in Healthcare
Gwen Darien is a three-time cancer survivor whose journey reflects resilience and advocacy. After being diagnosed with non-Hodgkin lymphoma, breast cancer, and endometrial cancer, Gwen navigated significant physical, emotional, and economic challenges. Her experiences of lack of trust from healthcare providers and the high costs of care prompted a shift from the arts to health […]
The Hidden Costs of Rare Disease: My Journey as a Caregiver and Advocate
Ushma Patel, Director of Patient Engagement at the Center for Innovation & Value Research, shares her personal experience navigating the economic and emotional impacts of her daughter’s rare disease. She highlights the often-overlooked financial burdens families face beyond direct medical costs and discusses how the Center’s Patient-Centered Economic Impacts Project seeks to address these challenges […]
Interview with Mike Herman, Cancer Survivor
Mike Herman’s journey as a cancer survivor is a testament to resilience, advocacy, and the importance of a comprehensive approach to patient care. His story sheds light on the medical, economic, and personal challenges faced by cancer patients and underscores the critical role of support systems and research in overcoming these challenges. Can you share […]
Patient Story: Dorothy Winningham
The Community Advisory Board (CAB), comprised of patients, patient advocates, and caregivers, provides insights, guidance, and co-leadership throughout phase II of The Center’s Economic Impacts project. This article features the personal story of one of our CAB members. Dorothy Winningham’s life is a tapestry of resilience, duty, and an unwavering caregiving spirit. She retired in […]
IVI MEMBER SPOTLIGHT: AiArthritis
Tiffany Westrich-Robertson, CEO at AiArthritis During a recent interview, Tiffany Westrich-Robertson, the CEO of AiArthritis, a member organization of IVI, discusses the challenges the arthritis community faces regarding access to therapies and equity issues in patient advocacy. She emphasized educating patients on Health Technology Assessment (HTA) and its impact on their health. Based on her […]
Navigating the U.S. Healthcare System: Challenges and Solutions
By Madoka Kumamaru, IVI Summer Intern and Graduate Student at the Columbia School of Public Health Five years ago, when I was a teenager with a chronic health condition returning to the United States for university, I encountered several challenges while navigating the healthcare system. Although some of my peers had coverage until age 26 […]
The Hidden Costs of Caregiving
By Ben Williams, IVI 2023 Summer Intern and Student at Davidson College Over the summer, my parents helped my grandparents move into an assisted living facility. It was an intense process that involved taking time off from work, packing up my grandparents’ home of 15 years, navigating their finances, and worrying about their future. Throughout […]
Bringing One Health Journey Forward: An Interview with Shannan O’Hara-Levi about the Economic Impacts of Rheumatoid Arthritis
In 2021, the Innovation and Value Initiative (IVI) and the Arthritis Foundation published a report, First Hand Perspectives in Rheumatoid Arthritis, describing how researchers often miss the priorities and needs of people living with rheumatoid arthritis (RA). Each of the patient-advocate co-authors reiterated that the costs related to RA reach far beyond direct medical costs, […]
IVI MEMBER SPOTLIGHT: Richard Seiden, JD
Richard Seiden, retired attorney and patient advocate, is a member of the IVI Patient Advisory Council, where he provides valuable insight into IVI’s work. In a recent conversation, Richard shared how psoriatic arthritis has impacted his life and why he works with IVI to center the patient within the health technology assessment process. Richard, thank […]