『S2 Ep 7 | Beyond the Diagnosis: Dorothy Leone-Glasser Discusses Empowering Patients and Changing Healthcare Policy in Georgia』のカバーアート

S2 Ep 7 | Beyond the Diagnosis: Dorothy Leone-Glasser Discusses Empowering Patients and Changing Healthcare Policy in Georgia

S2 Ep 7 | Beyond the Diagnosis: Dorothy Leone-Glasser Discusses Empowering Patients and Changing Healthcare Policy in Georgia

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WELCOME TO VITALS, THE PULSE OF GEORGIA LIFE SCIENCESAt the core of every illness is an individual. Obvious, yes, but often the individual's voice is not heard, not empowered, not embraced. In this very robust and thought provoking episode of VITALS, Maria Thacker Goethe, the CEO of Georgia Life Sciences, interviews Dorothy Leone- Glasser, a registered nurse specialist in rheumatology and immunology, who shared her journey with systemic lupus, emphasizing the importance of personal responsibility and lifestyle changes. She highlighted the need for patient engagement and advocacy, particularly in clinical trials and healthcare policy. Leone-Glasser discussed her organization, Advocates for Responsible Care (ARxC), which focuses on issues like pharmacy benefit managers (PBMs), cancer early detection, and the 340B program. She stressed the importance of collaboration between patients, industry, and policymakers to improve healthcare outcomes and called for increased patient and caregiver involvement in advocacy efforts.Dorothy Leone-Glasser's Patient Journey and Early CareerDorothy shares her patient story, detailing her critical illness at 19, including symptoms of arthritis, stroke, heart attack, and coma.It took five years to diagnose her with systemic lupus, which included right-sided kidney failure.Despite her illness, Dorothy emphasizes the importance of personal responsibility in managing her health and lifestyle changes.Challenges and Advocacy in HealthcareDorothy discusses the challenges she faced in her medical training and the lack of disability rights during her time.She transitioned into psychoneuroimmunology and wellness counseling to help other patients, focusing on personal empowerment.Dorothy became an advocate, insisting on being part of her treatment plan and actively engaging in her wellness.She highlights the importance of community and support systems for patients, sharing her experiences with the Arthritis Foundation and other rare disease communities.Impact of Healthcare System on PatientsDorothy reflects on the changes in the healthcare system since her early days, noting the increased politics, profiteering, and corruption.She emphasizes the need for a holistic view of the patient, beyond just the medical condition.Dorothy's philosophy is that illness lives in the mind and plays out in the body, but it finds peace in the spirit.She shares her work in thanatology and the importance of living a meaningful life and dying in peace.Community and Patient AdvocacyDorothy stresses the importance of finding a community and engaging with other patients to strengthen each other.She discusses the role of patient advocacy in healthcare, emphasizing the need for patients to have a voice and be part of the treatment plan.Maria and Dorothy discuss the challenges of isolation for patients and the importance of community support.Dorothy highlights the need for collaboration between patients, industry, and policymakers to improve healthcare outcomes.Advocates for Responsible Care (ARxC) and Its MissionDorothy explains the formation of ARxC and its mission to advocate for responsible care, particularly for patients in crisis situations.She shares an example of ARxC's work with Grady Hospital's outpatient dialysis clinic and the challenges faced by patients.ARxC's focus is on empowering patients and advocating for their rights, often representing patients who fall through the cracks of the healthcare system.Dorothy emphasizes the importance of empathy and accountability in healthcare, particularly for underserved communities.Legislative Priorities and ChallengesDorothy outlines ARxC's legislative priorities for the upcoming session, including pharmacy benefit managers (PBMs), cancer early detection, and the 340B program.She discusses the challenges of getting legislation passed due to the focus on campaigning during election years.Dorothy emphasizes the importance of transparency and accountability in healthcare, particularly in programs like the 340B Drug Pricing Program.She highlights the need for federal legislation to be consistent across states and the importance of state-level advocacy.Collaboration and Engagement with IndustryDorothy and Maria discuss the importance of collaboration between patients, industry, and policymakers to improve healthcare outcomes.They emphasize the need for industry to engage with patient advocates and understand the patient perspective.Dorothy shares her experiences with ARxC's coalition with organizations such as Reach Georgia, and the importance of having a unified voice.They discuss the challenges of getting industry to support patient advocacy and the need for more investment in patient care.Patient Advocacy and Legislative EngagementDorothy and Maria discuss the importance of patient advocacy and legislative engagement for improving healthcare.They highlight the need for patients to be more engaged in their care and to advocate for their rights.Dorothy ...
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