NextGen Patient Voice

In this episode, we explore key developments in the healthcare sector. Five leaders in health technology prioritize advancements in AI, while Medicare expands its Comprehensive Care for Joint Replacement Model, marking a significant shift in payment structures. Baptist Health plans to acquire two community hospitals in Arkansas, and a lawsuit involving Aetna and Radiology Partners under the No Sur...

In this episode, we explore the latest updates in healthcare and medical research. The CMS has proposed Medicare payment increases for skilled nursing facilities, hospices, inpatient rehabilitation, and psychiatric facilities for FY 2027, with a focus on enhancing quality reporting and oversight. The May 28, 2024 issue of JAMA highlights advancements in cardiovascular health, telemedicine, and men...

The AIRLYMPUS Study is investigating a new drug for adults with asthma to see if it can improve breathing, alleviate symptoms, and reduce future attacks when added to standard therapy. Eligible participants are aged 18-80, have had asthma for at least a year, and are on daily treatment. The BLU-808-1201 study is seeking participants with chronic spontaneous urticaria who still experience symptoms...

During Rare Disease Week, families across the nation are advocating for better access to treatments and clinical trials. A Colorado family highlights the challenges faced by rare disease patients after a crucial clinical trial for their son was abruptly terminated, underscoring the need for legislative and policy changes. NEJM AI emphasizes the importance of rigorous randomized control trials in t...

In this episode, we explore several key developments in the healthcare and biotech sectors. Cure Rare Disease and the LGMD2L Foundation have partnered to develop a gene therapy for Anoctamin 5-related disease, backed by $7.65 million. This collaboration aims to move a treatment from design to clinical trials, highlighting the role of patient-led organizations in rare disease research. A new clinic...

Welcome to today's episode, where we delve into the latest developments in the healthcare landscape. First, we explore "Principles for Access to Unapproved Therapies," a document from rarediseases.org that outlines guidelines for accessing unapproved medical treatments for rare diseases. It emphasizes ethical considerations, patient safety, and the need for transparent communication among patients...

In this episode, Judy Stecker shares her journey as a mother of a child with a rare disease, expressing newfound optimism due to advances in medical research and treatment options. She highlights the emotional and financial challenges faced by families, while recent developments offer hope for improved quality of life. Her story underscores the importance of continued research and innovation in ra...

Gene therapy is transforming healthcare with its potential to cure various diseases, yet remains out of reach for many Americans due to high costs and limited availability. Efforts to make these therapies more accessible are ongoing but slow, highlighting the need for systemic healthcare policy changes. Nemours Children’s Health is expanding pediatric care to include home-based services, using tec...

In today's episode, we delve into the unexpected FDA rejection of a rare disease drug initially deemed approvable, highlighting the complexities of the drug approval process. We also explore Evox Therapeutics' partnership with the Rett Syndrome Research Trust to develop gene editing therapies using their ExoEdit® platform. NEJM AI emphasizes the need for rigorous trials and ethical considerations...