On December 13, 2022, the COVID-19 Health and Safety Taskforce (CHeST) submitted a letter to the House and Senate Committees on Appropriations in support of the emergency supplemental funding request that the Biden Administration sent to Congress on November 15, 2022. CHeST is a coalition of non-profit patient advocacy organizations, including Pandemic Patients, that works to protect Americans against COVID-19, long COVID, and associated conditions.
The Administration’s funding request to Congress follows the publication of the U.S. Department of Health and Human Services’ (HHS) Health+ Long COVID Report, which identifies the need for additional investments to support people who have been affected by long COVID. The Administration’s emergency supplemental funding request asks Congress to allocate $750M to HHS for long COVID research and treatment in FY 2023. In the agency’s press release about the Administration’s funding request, HHS signaled that a portion of these funds will be used to support community-based organizations that have acted as an essential resource for people who have been affected by long COVID. The membership of CHeST includes several community-based organizations that have provided critical support and services for long COVID patients, which is one of the reasons the coalition supports the Biden Administration’s funding request.
If you are someone who has been affected by long COVID, we invite you to visit our COVID-19 Advocacy Center to send a message to your elected representatives in support of this funding request. Congress is currently negotiating over the details of the FY 2023 federal budget, with a tentative deadline of December 16, 2022.
Contact your legislator today to make sure they understand the importance of continued investment in long COVID.
Re: FY23 Emergency Supplemental Funding Request; Long COVID
Chairs DeLauro and Leahy and Ranking Members Granger and Shelby:
On November 15, 2022, the Biden Administration submitted an emergency supplemental funding request (the “Request”) to fund critical activities to address COVID-19 and long COVID in fiscal year (FY) 2023. Specifically, the Request would allocate $750 million to support long COVID research and treatment through the U.S. Department of Health and Human Services (HHS).
I am writing to you on behalf of the COVID-19 Health and Safety Taskforce (CHeST), which represents the interests of millions of COVID-19 patients, survivors, caregivers, and their family members nationwide. CHeST is a national coalition of non-profit patient advocacy organizations that works to protect Americans against COVID-19, long COVID, and associated conditions. We respectfully request that the U.S. House and U.S. Senate Committees on Appropriations fully fund the Administration’s Request for long COVID in the FY 2023 budget.
A preprint study, authored by researchers from the Harvard T.H. Chan School of Public Health, published on November 23, 2022, used a mathematical model to estimate that 94 percent of Americans have experienced at least one COVID-19 infection. Despite these estimates being based on a mathematical model, data from the Household Pulse Survey (HPS), published by the U.S. Census Bureau, shows an alarming increase in confirmed COVID-19 infections: In June 2022, 40.3 percent of Americans confirmed they had tested positive for COVID-19 at least once. By November 2022, that figure rose to 50.3 percent; an increase of approximately 33 million Americans.
In June 2022, the U.S. Centers for Disease Control & Prevention (CDC) published data showing that, among the adults in the United States who “reported having COVID-19 in the past,” 19 percent continue to experience symptoms. Referred to as “long COVID,” these persistent symptoms include fatigue, exercise intolerance, shortness of breath, cognitive impairment, sleep disturbances, depression, anxiety, and many others, which can be severe and debilitating. HPS data from the U.S. Census Bureau shows that, of the adults who have had a confirmed COVID-19 infection, 13.5 percent are currently experiencing long COVID. About a quarter of this population, 23.1 percent, have significant activity limitations caused by long COVID. A report published in Nature Medicine on November 10, 2022, analyzed health records from the national Veterans Affairs database and found that each subsequent COVID-19 reinfection increases the risk of developing long-term symptoms, hospitalization, and death.
The Brookings Institution recently published a report that discusses the economic impact of long COVID. As of August 2022, Brookings estimated that between 1.8 and 4.1 million full-time American workers have exited the labor force due to long COVID. The lost wages of this population range between $105B-$235B per year. A Harvard economist estimated in July 2022 that the economic impact of long COVID will exceed $3.7T, or approximately $11,000 per person. These costs represent lost quality of life, reduced earnings, and increased medical spending. This estimation has historically been revised upward alongside the total number of COVID-19 infections in the United States.
Emergency Supplemental Funding Request for FY 2023
The Administration’s emergency funding request follows HHS’ publication of the Health+ Long COVID Report (the “Report”), which articulates the need for additional investment to support individuals and families impacted by long COVID. The Report recommends a series of solutions that are informed by the experiences of long COVID patients, clinicians, researchers, and community-based patient advocacy organizations. However, many of these solutions cannot be implemented effectively without coordination between the separate branches of government. The Biden Administration has demonstrated its commitment to addressing the needs of people affected by long COVID, and we call on Congress to respond to this issue with heightened urgency.
Congress included $1.15 billion in the American Rescue Plan Act of 2021 to fund research on long COVID at the National Institutes of Health (NIH), but this is a long-term strategy with aspirational objectives. While advancing long COVID research is extremely important, a comprehensive approach for addressing the complex needs of long COVID patients requires targeted investments to improve patient access to care and the capacity of the long COVID support ecosystem. Testimony from long COVID patients, published in the Health+ Long COVID Report, confirms this:
It’s great that we’re starting to see funding for research, but long-haulers need to be able to survive and make it to see the answers from that research . . . . These people are losing their homes, they’re losing their cars, they’re rationing medications. They’re not going to doctors because they can’t afford the copays.
-Amalee, long COVID Advocate, mother, and person with long COVID
The Administration’s Request would accelerate the government’s response to long COVID by supporting HHS’ “continued work on long COVID, providers who serve patients with long COVID and its associated conditions, and community-based organizations that assist with case management and provide other essential services and supports.”
Funding for Community-Based Organizations
The Health+ Long COVID Report identifies several factors that contribute to how intensely long COVID impact’s a person’s life, including a person’s community and physical environment. This environment includes access to disability and other food, rent, and bill payment assistance programs and the presence of organizations that offer various forms of support. The Report describes how “advocacy organizations led by and for people with long COVID have mobilized to fill critical gaps since the beginning of the pandemic, and yet many are operating on volunteer hours and shoestring budgets.”
By dedicating their resources to working directly with the patient community, community-based organizations have developed significant expertise on long COVID, and they have served as a critical resource for people affected by long COVID. These organizations have “become a source of mutual assistance and community for many people impacted firsthand by long COVID, providing everything from moral support to step-by-step assistance applying for disability benefits.” The services provided by these organizations intersect with every juncture of the long COVID patient experience, including testing and diagnosis, access to care navigation, treatment, participation in clinical research, applications for safety net resources and pandemic relief programs, and more. However, as the number of people with long COVID increases, the needs of this community are rapidly outpacing the limited capacity of these community-based organizations. To bolster the long COVID support ecosystem, HHS recommends “[reinforcing] existing long COVID support groups with specialized funding,” which is reflected in the Administration’s emergency supplemental funding request.
The members of CHeST represent non-profit community-based organizations that have delivered critical resources for people who have been affected by long COVID. As advocates for the long COVID community, we have experienced first-hand how severe and debilitating long COVID can be. Accordingly, we have also faced enormous operational challenges pursuing this work. Our organizations are led by volunteers, we are understaffed, we lack the resources to fully satisfy the needs of the community, and funding opportunities are scarce. Testimony from long COVID advocates, published in the Health+ Long COVID Report, emphasizes how severely under-resourced long COVID community organizations are:
We are in a funding crisis. Our funding actually runs out at the end of this month. In order to keep us running for a few extra weeks, we have become volunteers.
-Emily, long COVID advocate and person recovered from long COVID
We are doing this completely on a volunteer basis. I am working from sunup to sundown pretty much every day of the week and on weekends. There is going to come a point where I just can’t do it anymore. I’ve exhausted my savings. I’ve racked up credit card debt. I’ve exhausted my retirement account. I can only really continue doing this for so much longer.
-William, long COVID advocate and legal advisor
The Administration’s emergency supplemental funding request would provide much-needed financial resources to organizations like ours who have become pillars of support for a growing community in dire need. Without sustained funding, our ability to deliver critical support and services to people affected by long COVID will be severely limited. We believe that the long COVID patient community deserves a strong public support ecosystem, and we are prepared to work collaboratively with Congress and the Administration to ensure the delivery of critical resources to people affected by long COVID.
We respectfully request that Congress fully fund the Administration’s $750 million emergency supplemental funding request for long COVID research and treatment in the FY 2023 budget.
Thank you for considering our position on the Administration’s funding Request. Please contact Andrew Wylam at firstname.lastname@example.org if you have any questions or comments about our position on this matter.
The COVID-19 Health and Safety Taskforce
COVID Survivors for Change
Long COVID Families