Patient Community Health Care Priorities to Improve Health Care Access


The 34 undersigned organizations, representing millions of patients and consumers across the country who face serious, acute, and chronic health conditions, urge you to enact policy change that will help support the health and wellbeing of the American public. Together, we represent more than 120 million people with pre-existing conditions in the U.S., many of whom have increased risk of infection and/or adverse health outcomes as a result of the COVID-19 pandemic. 

In early 2017, our organizations agreed upon three principles that we use to help guide our work on health care to continue to develop, improve upon, or defend the programs and services our communities need to live longer, healthier lives. These principles state that: (1) healthcare must be adequate, meaning that healthcare coverage should cover treatments patients need; (2) healthcare should be affordable, enabling patients to access the treatments they need to live healthy and productive lives; and (3) healthcare should be accessible, meaning that coverage should be easy to get, keep, and understand and not pose a barrier to care. 

Address Affordability of Health Insurance Premiums 

Despite gains made by the Affordable Care Act (ACA) and the American Rescue Plan Act, disparities in coverage persist and many people remain unable to afford health insurance due to high premiums. Congress should take additional steps to improve affordability by: 

  • Permanently codifying the increased generosity and expanded eligibility for advance premium tax credits (APTCs); 
  • Aligning the affordability of individual market insurance with employer sponsored insurance (ESI) by re-setting the definition of affordability for ESI at 8.5% and no longer indexing the affordability test to inflation; and 
  • Fixing the “family glitch” that locks out families from accessing APTCs if a single member has an offer of employer sponsored individual coverage that is considered affordable, even if family coverage would not be considered affordable. 

Address Affordability of Health Insurance Out-of-Pocket Costs 

In addition to the continued unaffordability of premiums, many people with coverage still cannot access care due to high cost sharing requirements. Congress should take action to ensure that coverage provides meaningful, equitable, and affordable access to care by: 

  • Shifting the APTC benchmark from silver plans to gold plans to decrease out of pocket exposure for patients; 
  • Ensuring that actuarial value (AV) of plans accurately reflect the financial risk faced by most consumers enrolled in the plan. This can be achieved through adjusting the standard population used to calculate AV and disregarding claims from outliers; and 
  • Taking other actions to address the rising out of pocket costs faced by enrollees in the individual market and ESI, such as through potentially incorporating deductible and cost-sharing into definitions of affordability. 

Support and Expand Medicaid Coverage 

The American Rescue Plan Act took important steps to expand Medicaid coverage, particularly for individuals in non-expansion states and for postpartum coverage, and our organizations encourage you to maximize the impact of those investments and continue to build upon them in future legislative packages. Additionally, Congress should take action to improve the continuity of Medicaid coverage for both children and adults by making continuous eligibility mandatory for both of those populations. 

Limit Inadequate Short-Term Limited Duration and Other Non-compliant Plans 

The need for adequate, affordable, and accessible coverage has become even more important during the COVID-19 pandemic. Unfortunately, sub-par insurance plans continue to proliferate, confusing consumers and leaving them under-covered, as many of our groups detailed in a recent report. Congress should take action to protect consumers by restricting access to short-term limited duration insurance and other non-compliant plans. 


We are ready to work on efforts that improve coverage and care for the millions of patients and people with pre-existing conditions. Thank you for your consideration. 


Alpha-1 Foundation 

ALS Association 

American Cancer Society Cancer Action Network 

American Diabetes Association 

American Heart Association 

American Kidney Fund 

American Lung Association 

Arthritis Foundation 

Asthma and Allergy Foundation of America 

Cancer Support Community 


Chronic Disease Coalition 

Cystic Fibrosis Foundation 

Family Voices 

Epilepsy Foundation 

Hemophilia Federation of America 

Immune Deficiency Foundation 

Lutheran Services in America 

Mended Hearts & Mended Little Hearts 

Muscular Dystrophy Association 

National Alliance on Mental Illness 

National Coalition for Cancer Survivorship 

National Health Council 

National Hemophilia Foundation 

National Kidney Foundation 

National Multiple Sclerosis Society 

National Organization for Rare Disorders 

National Patient Advocate Foundation 

Pulmonary Hypertension Association 

Susan G. Komen 

The AIDS Institute 

The Leukemia & Lymphoma Society 

United Way Worldwide 

WomenHeart: The National Coalition for Women with Heart Disease 

Read More