33 Organizations Representing Millions of Patients Urge Policymakers to Adopt “Patient-First” Policy Agenda

A coalition of 33 organizations representing millions of people with pre-existing conditions launched an unprecedented effort today by releasing their top priorities for the next Administration. The report elevates the collective voices of patients and urges elected officials to ensure all people living in the United States, including those with pre-existing conditions, have access to adequate and affordable health coverage.

Today, the organizations share “The 100 Days Agenda: A Patient-First Blueprint,” a first-of-its-kind collaboration that outlines specific steps the President and other elected officials can immediately take to protect patients once sworn into office in January.

The first 100 days of a president’s term and a new Congress are a key period when elected officials can leverage post-election momentum to initiate major reforms. Lawmakers have a unique opportunity this January to use that moment to prioritize patients’ need for quality, affordable healthcare.

The nonpartisan organizations have shared the blueprint with the campaigns of both President Donald Trump and former Vice President Joe Biden. The blueprint will also be circulated widely to state and federal legislators.

As patients face the dual threats of the pandemic and the financial crisis, this work couldn’t come at a more critical time. About 10.4 percent of non-elderly adults and 4.1 percent of children in the U.S. were uninsured, before the pandemic began, and those rates have increased in recent years. Meanwhile, an estimated 12 million people have lost employer-sponsored health insurance since February, largely due to the economic impact of COVID-19.

The policy agenda – released 10 years after the Affordable Care Act became law – provides guidance on how policymakers, including the Administration, can leverage each of the three branches of government to protect patients and strengthen our system of care. It also includes steps policymakers can take to address harmful policies that undermine patient protections, including protections for those with pre-existing conditions.

While the Affordable Care Act has extended healthcare to millions, the 33 patient organizations also acknowledge there are additional ways to build upon that landmark law and extend healthcare to even more patients.

Specifically, the agenda urges policymakers to prioritize patients by:

  • Preserving and strengthening access Medicaid, a crucial lifeline that serves 1 in 5 Americans, and removing roadblocks that were created to reduce patients’ ability to obtain healthcare using this vital program.
  • Rolling back the expanded availability of non-compliant and insurance-like products, which resemble insurance but provide insufficient coverage and discriminate against those with pre-existing conditions.
  • Improving access to high-quality coverage available in the Marketplace, through extended open-enrollment periods, increased subsidies, and more support to help patients understand their insurance options.
  • Eliminating surprise medical bills, which are devastating to families and discourage patients from receiving needed healthcare.

The following organizations endorsed “The 100 Days Agenda: A Patient-First Blueprint.”

The Leukemia & Lymphoma Society
American Lung Association
Epilepsy Foundation
American Cancer Society Cancer Action Network
Muscular Dystrophy Association
Cystic Fibrosis Foundation
National Multiple Sclerosis Society
National Psoriasis Foundation
American Heart Association
National Patient Advocate Foundation
National Health Council
Arthritis Foundation
United Way Worldwide
Chronic Disease Coalition
Lutheran Services in America
National Alliance on Mental Illness
American Liver Foundation

National Organizations for Rare Disorders
Hemophilia Federation of America
Mended Hearts & Mended Little Hearts
American Kidney Fund
Cancer Support Community
ALS Association
The AIDS Institute
WomenHeart: The National Coalition for Women with Heart Disease
National Kidney Foundation
Susan G. Komen
National Hemophilia Foundation
Pulmonary Hypertension Association
Asthma and Allergy Foundation of America
Family Voices
March of Dimes
Crohn’s & Colitis Foundation


For more information, contact:

Elizabeth Cook
[email protected]

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