As the ADA Turns 36, PIPC Highlights Work to be Done. Learn More About How the QALY Devalues Disabled Lives.

​In many other countries, governments use the quality-adjusted life year (QALY) metric to assign a numeric value to patients’ lives and decide whether covering tests, treatments, services, and other forms of care is worth the cost. Decisions based on “cost effectiveness” which is typical in countries that ration care can delay or deny care to people with disabilities.

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​Low QALY values and inaccurate measures of quality of life and health improvement can lead policymakers to determine that care is not cost effective or worth covering. These calculations may fail to reflect how people adapt to disability, the value of greater independence, or the benefits of accommodations and supportive services. Below are examples of QALY health utilities that assign a lower value to the lives of people with disabilities.

​Policies referencing foreign QALY-based reimbursement decisions like “Most Favored Nation” drug pricing proposals would import these flawed metrics into the U.S. In fact, 18 of 19 countries referenced in the proposals make use of the QALY (formal or informal) in coverage and reimbursement decisions.1 Policymakers should reject foreign reference pricing. 

Learn more at https://valueourhealth.org/voh-world-map/

Source	QALY-based Value Assigned to Disabled Lives	Source
Individual in “Perfect Health”	1.0	PIPC/Everylife
Death	0.0	PIPC/Everylife

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Epilepsy A neurological condition characterized by recurring seizures that may affect awareness, movement, memory, communication, and personal safety. Unpredictable seizures can also limit driving, employment, education, and independent activities.	0.87	Arimoro et al
Cerebral palsy Cerebral palsy is an umbrella term for a group of neurological disorders that affect body movement, coordination, balance, posture, and muscle control caused by damage to the developing brain around birth. The type and severity vary, with some individuals requiring mobility devices, assistance with daily activities, or ongoing supportive care.	0.825 for cerebral palsy in children	Tonmukayakul, et al.
Multiple sclerosis (MS) Chronic autoimmune disorder affecting the brain and spinal cord. Symptoms may include fatigue, muscle weakness, impaired coordination, vision problems, pain, and progressive limitations in mobility or daily functioning.	0.682	Young, et al.
Autism A lifelong developmental disability impacting communication, social interaction, sensory processing, behavior, and/or daily functioning. Abilities and support needs vary widely - some may require substantial assistance with communication, education, employment, safety, or independent living.	0.59 for autism in children	Kanya, et al.
Total vision impairment ​Significant or complete loss of vision that can affect reading, navigation, transportation, employment, and access to visual information. People may use assistive technology, mobility training, or other accommodations to participate independently	​0.26	Brown, et al.
Traumatic brain injury (TBI) ​Injury that disrupts normal brain function and may cause lasting difficulties with memory, concentration, communication, movement, sensory function, mood, and behavior. Some individuals require long-term rehabilitation or daily assistance.	0.26	Fuller, et al.
Profound hearing loss Significant or complete loss of hearing that can affect access to spoken communication and environmental sounds. Individuals may communicate through sign language, captioning, hearing technology, interpreters, or other accommodations.	0.204	Borre, et al.
Stroke with long-term disability Interruption of blood flow to or bleeding within the brain that can result in lasting paralysis or weakness, speech and communication difficulties, cognitive changes, vision impairment, and loss of independence in daily activities.	-0.04	Zhou, et al.