June 5, 2020

Denied Access to Treatment

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. 


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. 


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 


Oklahoma QALY Ban

Patients Anticipate Future Access to Care Troubles from COVID-19

Kayden’s Christmas Cards

Cure SMA

Patients Rising Concierge 

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