The Perils of QALYs: Addressing Discrimination Against People with Disabilities and Serious Chronic Conditions 

 

UPDATE: 

Report from National Council on Disability: Quality Adjusted Life Years and the Devaluation of Life with Disability

Report discusses QALY and its dangers and implications for people with disabilities and chronic conditions and provides recommendations,  and best practices on how to facilitate access of care.  

See https://ncd.gov/sites/default/files/NCD_Quality_Adjusted_Life_Report_508.pdf 

Monday, May 20, 2019

12:00 pm - 2:00 pm

The Partnership to Improve Patient Care (PIPC) and The Coelho Center on Disability Law, Policy and Innovation brought together people with disabilities, patients, seniors, families, individuals experiencing disparities in care, providers and advocates to join our esteemed panel to learn about value assessments, their potential for discrimination, and related public policy threats to beware of at both the federal and state level. 

Presenters: 

  • Tony Coelho, Chairman of the Partnership to Improve Patient Care and Founder of The Coelho Center 
  • Sara van Geertruyden, Executive Director of the Partnership to Improve Patient Care 
  • Ari Ne'eman, Disability advocate and PIPC consultant 
  • Colin Killick, Deputy Director, Massachusetts Disability Policy Consortium 

Background: 

Metrics for measuring the "cost effectiveness" or value of treatments often relies on discriminatory methods, like the quality-adjusted-life-year (QALY), which values the lives of people with disabilities and serious chronic conditions as worth less than those of non-disabled people. QALYs are increasingly at the center of state and federal discussions about drug pricing, and advocates may be unfamiliar with how to engage with a complicated but important issue area. 

Disability rights advocates have long fought against the QALY, achieving a prohibition against its use in Medicare within the Affordable Care Act. Previous administrations have ruled that using QALYs to allocate healthcare resources may constitute a violation of the Americans with Disabilities Act. But over the last few years, QALY-based proposals have become increasingly common, threatening access to lifesaving medications for people with disabilities and those with chronic illness. 

 

Photo description: Attendees at the event look forward as Sara Van Geertuyden gives her presentation.  Two other individuals sit on the panel in the front of the room and an ASL interpreter is next to Sara. 

Photo description: Attendees at the event sit at various round tables throughout the room, some looking toward one of the attendees who is asking a question during the question and answer portion of the program.