Letter to Congress: Build Back Better 2.0

February 11, 2022

The Honorable Nancy Pelosi
U.S. House of Representatives
Washington, DC 20515

The Honorable Charles Schumer Majority Leader
U.S. Senate
Washington, DC 20510

Dear Speaker Pelosi and Leader Schumer:

As organizations that represent millions of patients and consumers who face serious, acute and chronic health conditions, we urge you to continue to work to enact policies that expand access to quality and affordable healthcare in the Fiscal Year 2022 budget reconciliation process.

Specifically, we ask that you act swiftly to permanently expand Affordable Care Act programs to ensure access to health care for the American people. This includes making the enhanced advance premium tax credits (APTCs) permanent and closing the Medicaid coverage gap.

Our organizations ask that Congress permanently extend the expansion of APTCs included in the American Rescue Plan Act. During the 2021 special enrollment period created in response to the COVID pandemic, 2.8 million Americans enrolled in health insurance coverage. Those who were newly enrolled or returning customers after ARPA implementation saved an average of 50% in premiums and nearly half of healthcare.gov customers with a new plan selection were able to select plans for $10 or less per month. Further, enhanced APTCs helped lead to record sign ups through the marketplaces during the 2022 open enrollment period. Making the expansion of APTCs permanent will significantly ease the cost burden for people who rely on the individual marketplace for coverage and will prevent the erosion of these coverage gains in 2023 and beyond.

Medicaid is a vitally important program for the patients and individuals we represent. Individuals who fall in the Medicaid coverage gap in the 12 remaining non-expansion states are among the poorest in America and disproportionally represent communities of color. Expansion incentives included in the American Rescue Plan Act (ARPA) continue to play a dynamic role in states that are actively exploring expanding. It is therefore critical that Congress retain these incentives as you explore alternative coverage gap solutions.

For those states that are unlikely to expand, however, it is imperative that the federal government take steps to provide coverage that ensures the full benefits and cost-sharing protections typically offered in Medicaid. Our organizations urge that, in taking steps to close the Medicaid coverage gap, Congress ensure that patients’ access to quality and affordable coverage not be jeopardized in the future and that states that have already expanded maintain that coverage.

Congress has an unprecedented opportunity to expand access to high-quality and affordable coverage that the American public cannot afford to lose. All individuals, regardless of where they live, deserve access to quality and affordable insurance coverage that they can count on now and in the years to come. Our organizations stand ready to assist in achieving these goals.


The AIDS Institute
Alpha-1 Foundation
ALS Association
American Cancer Society Cancer Action Network
American Heart Association
American Kidney Fund
American Lung Association
Arthritis Foundation
Asthma and Allergy Foundation of America
Cancer Support Community
Crohn’s & Colitis Foundation
Cystic Fibrosis Foundation
Epilepsy Foundation
Hemophilia Federation of America
Immune Deficiency Foundation
The Leukemia & Lymphoma Society
March of Dimes
Mended Little Hearts
Muscular Dystrophy Association
National Alliance on Mental Illness
National Coalition for Cancer Survivorship
National Eczema Association
National Health Council
National Hemophilia Foundation
National Kidney Foundation
National Multiple Sclerosis Society
National Organization for Rare Disorders
Susan G. Komen
United Way Worldwide


The Honorable Steny Hoyer, Majority Leader, U.S. House of Representatives
The Honorably James Clyburn, Majority Whip, U.S. House of Representatives
The Honorable Dick Durbin, Majority Whip, U.S. Senate
The Honorable Ron Wyden, Chair, Senate Finance Committee
The Honorable Patty Murray, Assistant Democratic Leader and Chair, Senate Committee on Health Education, Labor and Pensions
The Honorable Richard Neal, Chair, House Committee on Ways and Means
The Honorable Frank Pallone, Chair, House Committee on Energy and Commerce