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Long COVID legislation update

Jun 1, 2022

As awareness about Long COVID increases, lawmakers are beginning to propose legislation to increase funding for research and resources for Long COVID. Here are a few examples of recent legislation that has been introduced.

This blog post has been updated to include two reports from August 2022.

Presidential Memorandum

In April 2022, President Biden issued a memorandum to coordinate Long COVID response efforts across the federal government. The memorandum and its accompanying fact sheet outline the major activities proposed, including:

  • Research: The development of an interagency National Research Action Plan on Long COVID to better understand Long COVID and inform treatment and support for patients. Part of this effort will include the Administration accelerating enrollment into the National Institute of Health’s Researching COVID to Enhance Recovery (RECOVER) initiative with the aim of enrolling 40,000 individuals from different backgrounds into the study to expand our understanding of Long COVID. The President also requested additional funds to study the characteristics and mechanisms of Long COVID, through programs including the Innovative Support for Patients with SARS-CoV-2 Infections Registry (INSPIRE) study. Additional efforts include analyzing Veterans Affairs (VA) data to study the health effects of the disease as well as identifying workplace interventions and disability benefits for affected workers.
  • Clinical support: In order to deliver high-quality care to individuals affected by Long COVID, the President announced investments to investigate how health care systems can deliver and promote the best care for patients with Long COVID, including expanding and establishing Long COVID clinics. Additional proposals include enhancing provider education on best practices to manage Long COVID and assessing health insurance coverage to expand access to care for Long COVID and associated symptoms.
  • Awareness and support: The Presidential Memorandum also calls for raising awareness about Long COVID and its potential cause of disability. The Administration will aim to connect patients with resources and support, including efforts to understand the mental and behavioral effects of Long COVID, and provide disability information and support for workers.

Comprehensive Access to Resources and Education (CARE) for Long COVID Act

The CARE for Long COVID Act was introduced in March 2022 by Senators Tim Kaine (D-VA), Edward Markey (D-MA) and Tammy Duckworth (D-IL). The bill proposes several action items including:

  • Research: Funding research to understand the long-term symptoms of COVID-19 in order to improve treatment and outcomes for patients.
  • Health care system response: Supporting research to understand the US health care system’s response to Long COVID, including identifying barriers to accessing treatment as well as identifying health care strategies that can help mitigate disparities and understand health care-related factors contributing to disparities.
  • Public education and awareness: Educating and raising awareness among the public about Long COVID in accessible formats. The bill also proposes educating health care providers about Long COVID, including providing information about assessment and management tools.
  • Coordination across agencies: Collaborating and coordinating across federal agencies to develop and distribute resources to the individuals affected by Long COVID, including information regarding employment, education, and disability guidance.
  • Medicaid coverage: Collecting data to assess Long COVID services provided under Medicaid.
  • Legal assistance: Establishing and expanding legal assistance and support to individuals with Long COVID on matters such as disability, access to care, and employment support, among others.

Targeting Resources for Equitable Access to Treatment (TREAT) for Long COVID Act

The TREAT Long COVID Act was introduced in the Senate in April 2022 by Senators Tammy Duckworth (D-IL), Edward Markey (D-MA), and Tim Kaine (D-VA) and introduced in the House by Rep. Ayanna Pressley (D-MA), Rep. Lisa Blunt Rochester (D-DE) and Rep. Donald Beyer (D-VA). The bill aims to:

  • Support Long COVID clinics: Establish a grant program to create or enhance the capacity of Long COVID clinics. The bill specifies equitable access to treatment so that a grantee must provide best practices and treatment to everyone where they live and cannot deny access to Long COVID treatment based on insurance, date or method of diagnosis, or previous hospitalization.

Long COVID is gaining more recognition at the legislative level as we learn more about the disease. It will be important to track the status of these bills and future legislation as they are reviewed by the Senate and House of Representatives to see how funding and support for research, education, and policy will continue in the future.

The National Research Action Plan on Long COVID

The National Research Action Plan on Long COVID was published in August 2022. The Plan was created by fourteen government departments and agencies and is the first United States government-wide national research agenda that is directly focused on advancing the prevention of Long COVID, diagnosing and treating the virus and providing services and support for individuals and families effected by Long COVID.

The Research Plan has four guiding principles:

  1. Health equity
  2. Accelerating and expanding current research
  3. Orienting the research effort to improve patient care
  4. Partner engagement

The plan emphasizes the benefits of collaboration between the private and public sectors who can work together to enhance the prevention, diagnosis, treatment and provision of healthcare, public health and human services for those suffering from Long COVID.

The Services and Supports for Longer-Term Impacts of COVID-19 Report

The Services and Supports for Longer-Term Impacts of COVID-19 Report highlights federal services which are available to the public to address the long-term effects of COVID-19, Long COVID and other related conditions for both individuals and their families. The information provided focuses on three areas.

  1. How to navigate health care coverage rights, community services, financial support, nutrition and educational support and more.
  2. Resources for health care professionals treating patients with Long COVID and support for health care professionals experiencing stress and trauma associated with COVID-19.
  3. Services for those facing mental health, substance use and bereavement challenges.

For inquiries related to the Long COVID Initiative, please contact [email protected]