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QALY Coalition Letter 4.21.21

Every life is valuable. We strongly urge policymakers to reject policies that discriminate against people with disabilities and chronic conditions, older adults, and reinforce health inequities.

As organizations representing patients and people with disabilities, we call on policymakers to work to ensure the most vulnerable populations among us, including people with disabilities, will not be denied coverage or access to high quality health care based
on discriminatory measurements of a treatment’s value. Our core belief is rooted in the idea that every American is valuable.

We are eager to work with lawmakers on policies that will improve Americans’ health and quality of life. It is critical to remain committed to our shared goal of preventing discrimination against people with disabilities and chronic conditions by condemning policies that would rely on the Quality-Adjusted Life Year (QALY) or similar average metrics that fail to account for those who are not average. There is a long history of strong, bi-partisan opposition to QALY-based policies in Medicare and Medicaid that could hurt our most vulnerable populations. Therefore, we strongly urge policymakers to reject potentially catastrophic legislation and policies that reference QALYs and similar metrics, which reinforce health inequities, devalue people with disabilities and chronic conditions, older adults and communities of color. The National Council on Disability explicitly warned that policies that would reference QALYs, directly or by referencing foreign prices for medicines, could result in a loss of access to care for people with disabilities.

We are committed to working with the Biden Administration and 117th Congress as well as states on common sense health reforms centered on patients and people with disabilities, while tackling important issues such as affordability. We will work across the aisle to ensure the implementation of health care solutions.

Asthma and Allergy Foundation of America
Allergy & Asthma Network
Alliance for Aging Research
Alstrom Syndrome International
American Association of Kidney Patients
American Association of People with Disabilities
American Association on Health and Disability
American Autoimmune Related Diseases Association
Amyloidosis Support Groups, Inc.
Association of University Centers on Disabilities
Autism Society of America
Autistic Self Advocacy Network
Axis Advocacy
Bazelon Center for Mental Health Law
Beyond Type 1
Boomer Esiason Foundation
Brain Injury Association of America
Bridge the Gap – SYNGAP Education and
Research Foundation
CancerCare
CARE About Fibroids
Center for Autism and Related Disorders
Chronic Disease Coalition
Color of Crohn’s and Chronic Illness
Cri di Chat Research Foundation
Cure SMA
Cutaneous Lymphoma Foundation
Cystic Fibrosis Research Institute
Davis Phinney Foundation
Diabetes Leadership Council
Diabetes Patient Advocacy Coalition
Disability Rights Education and Defense Fund (DREDF)
Epilepsy Foundation
Family Voices
Genetic Alliance
Global Liver Institute
Health Hats
HealthHIV
Heart Valve Voice US
HIV+Hepatitis Policy Institute

ICAN, International Cancer Advocacy Network
Institute for Patient Access
International Foundation for Autoimmune and
Autoinflammatory Arthritis
Lakeshore Foundation
LEAD Coalition
Lupus and Allied Diseases Association, Inc.
Lupus Foundation of America
M-CM Network
Men’s Health Network
Mental Health America
MPS Society
National Alliance for Hispanic Health
National Alliance on Mental Illness
National Coalition for LGBT Health
National Council on Independent Living
National Osteoporosis Foundation
NBIA Disorders Association
NEC Society
Not Dead Yet
NTM Info & Research
Parent to Parent USA
Parkinson’s Foundation

Partnership to Improve Patient Care
Pemphigus and Pemphigoid Foundation
Pulmonary Hypertension Association
PXE International
RASopathies Network
Sickle Cell Community Consortium
Sickle Cell Disease Association of America, Inc.
TASH
The ALS Association
The American Kidney Fund
The Arc of the United States
The Bonnell Foundation: Living with cystic fibrosis
The Coelho Center for Disability Law, Policy
& Innovation
The Michael J. Fox Foundation for
Parkinson’s Research
The Migraine Diva
The VHL Alliance
The White Dress Project
Tuberous Sclerosis Alliance
United Cerebral Palsy
United Spinal Association
Vietnam Veterans of America
Wilson Disease Association
ZERO – The End of Prostate Cancer