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23 Patient and Consumer Groups Urge States to Protect Access to Quality and Affordable Healthcare, Protect Americans with Pre-existing Conditions

New federal 1332 waiver guidance allows states to undermine health protections for patients

(December 18, 2018) - WASHINGTON, D.C.

For more information please contact:

Allison MacMunn
[email protected]

Today 23 patient and consumer groups sent a letter to the Administration, state governors and state insurance commissioners outlining concerns the groups have around the failure of the new 1332 guidance to protect patients. In addition, the groups released the following shared statement: 

"As patient and healthcare organizations, we represent and support millions of individuals facing serious, acute and chronic health conditions. Affordable and quality healthcare is essential for the health and lives of the patients we represent. 

"Our organizations are disturbed by the troubling ruling in the Texas v. United States district court case last week, and we are committed to continuing to protect patients with pre-existing conditions. As such, we are deeply concerned about new guidance regarding state waivers under Section 1332 of the Affordable Care Act (ACA)and the related Section 1332 State Relief and Empowerment Waiver Concepts Discussion Paper. In short, the policies that states could pursue under the new guidance would significantly undermine access to quality and affordable healthcare for patients with pre-existing conditions and clearly conflict with the statutory language that both authorizes these waivers and protects patients with pre-existing conditions. We filed comments urging the Administration to rescind this guidance, and we urge state leaders to protect the health of their residents by refraining from using 1332 waivers, as envisioned by this new guidance, to undermine quality and affordable healthcare in their state. 

"The new guidance removes key language from previous guidance on 1332 waivers that protects vulnerable populations and grossly misinterprets the ACA guardrails. This will have real consequences for patients, steering people into substandard coverage, such as short-term, limited-duration plans and association health plans, which often do not cover the full range of benefits and services that patients rely upon the manage their conditions. 

"The Administration's waiver concepts discussion paper provides additional detail on potential proposals that, under the new guidance, could endanger patients with pre-existing conditions. Our organizations have called on the Administration to withdraw both the guidance and the concept paper to protect the health and wellbeing of the patients and families we represent." 

Adult Congenital Heart Association

American Heart Association

American Liver Foundation

American Lung Association

Arthritis Foundation

Chronic Disease Coalition

Cystic Fibrosis Foundation

Epilepsy Foundation

Global Healthy Living Foundation

Hemophilia Federation of America

Immune Deficiency Foundation

Leukemia & Lymphoma Society 

Lutheran Services in America 

March of Dimes

Mended Little Hearts

Muscular Dystrophy Association 

National Alliance on Mental Illness

National Hemophilia Foundation

National Multiple Sclerosis Society

National Organization for Rare Disorders

National Patient Advocate Foundation

Susan G. Komen

WomenHeart: The National Coalition for Women with Heart Disease 


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