Denied Access to Treatment

A victory for patients in Oklahoma as the state bans a discriminatory healthcare metric. Quality-adjusted-life-years (QALYs) are used by numerous insurance companies to block coverage based on disability or age. Two mothers of children with spinal muscular atrophy (SMA) explain how QALYs impact their children's access to affordable healthcare.  Guest:  Amanda Chaffin Amanda Chaffin is the mother of Kayden, a seven-year-old with spinal muscular atrophy (SMA). Amanda and her family reside in Norman, Oklahoma, where a ban on quality-adjusted-life-years was recently enacted.  Following Kayden's diagnosis, Amanda faced immense challenges in securing the medical equipment he needed, which propelled her into the patient advocacy space. She works with Cure SMA, an organization that drives funding for SMA research and provides support for families affected by the genetic disease.  Kayden Chaffin made news headlines over the thousands of Christmas cards that strangers sent to him over the holidays.  Hosts: Terry Wilcox, Executive Director, Patients Rising Dr. Robert Goldberg, "Dr. Bob", Co-Founder and Vice President of the Center for Medicine in the Public Interest. Kate Pecora, Field Correspondent  Links: Oklahoma QALY Ban Patients Anticipate Future Access to Care Troubles from COVID-19 Kayden's Christmas Cards Cure SMA Patients Rising Concierge  Need help? The successful patient is one who can get what they need when they need it. We all know insurance slows us down, so why not take matters into your own hands. Our Navigator is an online tool that allows you to search a massive network of health-related resources using your zip code so you get local results. Get proactive and become a more successful patient right now at PatientsRisingConcierge.org Have a question or comment about the show, want to suggest a show topic or share your story as a patient correspondent? Drop us a line: [email protected] The views and opinions expressed herein are those of the guest(s)/ author(s) and do not reflect the official policy or position of Patients Rising.