NORD Joins Coalition of 48 Patient Advocacy Organizations Expressing Concerns Over Coverage Loss Under Final CMS Medicaid Work Requirement

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Washington, D.C. — (June 3, 2026)  Yesterday 48 non-profit, non-partisan patient organizations issued a statement in response to the interim final rule implementing the new Medicaid work reporting requirement provisions in Public Law 119-21.

“Throughout the legislative process, lawmakers repeatedly promised that the patients we represent would not be harmed by the policies that terminate Medicaid coverage for millions of in Public Law 119-21. Our organizations are deeply concerned the interim final rule does not protect people with serious or complex health conditions and would instead dramatically and inappropriately increase the number of people who will lose their healthcare coverage.”

“Redefining the law’s medical frailty exemption to only apply to individuals who can prove they cannot work and drastically limiting the ability of states to accept self-attestation from patients about compliance and exemptions starting in 2028 clearly conflicts with the law. These policies will place massive paperwork burdens on patients and providers, upend months of planning by states and create chaos just months away from the January 2027 implementation deadline.”

“While it is impossible to fully shield patients from the impact of the devastating cuts coming to the Medicaid program, our groups are committed to working with federal and state policymakers throughout the implementation process to set policies that protect access to Medicaid. We urge CMS to adopt a definition of medical frailty and processes to document compliance that protect patients and are consistent with the law.”

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AiArthritis
Immune Deficiency Foundation
Alpha-1 Foundation
Legal Action Center
ALS Association
Lupus Foundation of America
American Cancer Society Cancer Action Network
Lutheran Services in America
American Heart Association
March of Dimes
American Kidney Fund
Muscular Dystrophy Association
American Liver Foundation
National Alliance on Mental Illness
American Lung Association
National Bleeding Disorders Foundation
Arthritis Foundation
National Health Council
Asthma and Allergy Foundation of America
National Kidney Foundation
Autoimmune Association
National Multiple Sclerosis Society
Blood Cancer United
National Organization for Rare Disorders
CancerCare
National Patient Advocate Foundation
Cancer Nation
National Psoriasis Foundation
Cancer Support Community
Parkinson’s Foundation
Crohn’s & Colitis Foundation
Pulmonary Hypertension Association
Cystic Fibrosis Foundation
Sickle Cell Disease Association of America, Inc.
Diabetes Patient Advocacy Coalition
Susan G. Komen
Epilepsy Foundation of America
The AIDS Institute
EveryLife Foundation for Rare Diseases
The Coalition for Hemophilia B
Family Voices National
UsAgainstAlzheimer’s
Foundation for Sarcoidosis Research (FSR)
Volunteers of America
Hemophilia Federation of America
WomenHeart
Hypertrophic Cardiomyopathy Association
ZERO Prostate Cancer