On December 7, 2022, Pandemic Patients joined with COVID Survivors for Change, Long COVID Families, and Survivor Corps to request funding for long COVID research in the federal defense budget for FY 2023. The advocacy groups submitted this letter as Congress deliberates the federal government’s priorities for the coming year. Congress faces a Dec. 16, 2022, deadline for passing the FY 2023 budget, but legislators may pass a Continuing Resolution (CR) to extend the deadline through the end of the month.
In a letter addressed to the members of the Senate Appropriations Committee Defense Subcommittee, the advocacy groups supported the allocation of $5,000,000 for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) research within the Department of Defense’s (DoD) Congressionally Directed Medical Research Programs (CDMRP). Additionally, the advocacy groups requested that the Assistant Secretary of Defense for Health Affairs conduct research on long COVID and ME/CFS with a focus on issues related to military populations.
If you have been affected by long COVID, Pandemic Patients invites you to support our advocacy efforts by sending a message to your elected representatives using our COVID-19 Advocacy Center. With our integrated advocacy tools, you can support our request for long COVID research funding with just a few clicks.
The text of the letter is available below.
Re: Congressionally Directed Medical Research Programs; COVID-19
Chair John Tester, Ranking Member Richard Shelby, and Members of the Defense Subcommittee:
My name is Charonda Johnson, and I am the Strategic Partnerships Manager for COVID Survivors for Change, a nonpartisan nationwide community of survivors fighting for a stronger pandemic response to save lives by supporting survivors, remembering those who have died, and advocating for public health measures to prevent future pandemics.
I am writing to you on behalf of the undersigned organizations, which represent the interests of millions of COVID-19 patients, survivors, caregivers, and their family members nationwide. We believe Congress must fund programs to accelerate the development of treatments and cures for COVID-19, long COVID, and other associated conditions, including myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS). Prioritizing funding for these research programs is necessary to strengthen our national security and combat readiness.
We respectfully request that the Defense Subcommittee adopt report language endorsed by the House Defense Appropriations Committee for the Department of Defense – Defense Health Program. Specifically, we support the House Defense Appropriations Committee’s recommendation to include $5,000,000 for the Combat Readiness–Medical Research Program (CRRP) to fund ME/CFS research. Additionally, we request that the Defense Subcommittee adopt the House Defense Appropriations Committee’s report language recommending that the Assistant Secretary of Defense for Health Affairs “conduct research on long COVID and ME/CFS with a focus on issues related to military populations.”
I come from a long line of military and public servants and have many relatives and grandparents buried in veteran cemeteries. I am the daughter of Kevin B. Taylor, an Air Force retiree who we lost to a fatal COVID-19 infection in August 2020. My dad was healthy when he became infected with COVID-19 and died less than a month later. The factors that may have made him high-risk for severe COVID-19 outcomes was the fact that he was 62 and an African American male. However, when my dad was exposed to COVID-19 he was much healthier than I am today.
By the Department of Veterans Affairs (VA) standards, I am 100 percent totally and permanently disabled. As a result of my disability, I resigned my position from JPMorgan prior to the start of the coronavirus pandemic because of health challenges I was experiencing related to chronic fatigue. During my military service, I provided direct intelligence support to F-117A aircrews during the onset of Operation Iraqi Freedom. My squadron, the 8th Expeditionary Fighter Squadron, was responsible for launching the first combat attack missions in Iraq. I also deployed to Balad Air Base (AB), Iraq in 2006 while the country was plunging into civil war. During my service at Balad AB I was exposed to toxic burn pits and my health began to rapidly decline. My deteriorating health was one of the biggest reasons why I chose to leave the military service in 2007 when I completed my enlistment contract.
By July of 2008, after leaving the military, my body was falling apart. Every joint in my body was swelling, I dealt with severe pain that seemed to come and go, and I was having trouble walking and completing basic tasks like dressing myself. I was hospitalized for over a week as I watched VA physicians run a plethora of tests to diagnose me with fibromyalgia and polyarthritis. At times, the experience made me feel as if my chronic symptoms were psychosomatic despite being on 13 different medications and enduring constant pain.
I was not given any hope of recovery until being examined at the East Orange, War Related Injury Illness Study Center (WRIISC) in 2009. I learned to advocate for myself through the VA system while serving as a military and veteran constituent advocate for Senator Biden. Over time, after many lifestyle changes, a lot of trial and error, tons of prayer, and choosing to believe that my body would recover, my health began to improve. I still faced many health challenges, but I did not require a wheelchair, I began walking without the assistance of a cane, and I learned how to complete tasks at a slower pace, which allowed me to continue working.
During the coronavirus pandemic, I have continued to experience consequences from my years of military service. I have received letters from the VA advising me to stay indoors because they were not sure how my body would respond to COVID-19. After seeing how quickly my father’s COVID-19 infection became fatal, my family took extraordinary measures to avoid being exposed to COVID-19.
Unfortunately, I became infected with COVID-19 in May 2022, before I was eligible to receive the most recent booster dose of the vaccine. I made repeated attempts to obtain the vaccine booster, but it was not an option at the time. After my initial diagnosis, the doctors at the VA did not offer me any antiviral medication because I was not sick enough. I was able to obtain Paxlovid from an outside physician based on my complicated medical history and the fact that my dad had died so quickly of covid. My infection with covid included severe symptoms, including migraine, balance issues, vision changes, light sensitivity, pharyngitis, and extreme fatigue. I struggled with my symptoms for months, and ultimately became unable to manage my own transportation because my loss of balance prevented me from properly handling a vehicle.
When I discussed my recovery from COVID-19 with the doctors at the VA, they diagnosed me with long COVID. I have completed physical therapy for my balance issues, obtained new glasses for my vision issues, obtained sleep medication to help me rest when I experience severe headaches, and I have been referred to neurologists to investigate tremors I’ve experienced. My pulmonary function has also deteriorated, despite appearing normal on diagnostics. I continue to struggle with my health as I search for ways to relieve these chronic symptoms. My experience is similar to many other Americans whose lives have been turned upside down by COVID-19.
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.
Long COVID and the Armed Forces
The U.S. Department of Defense (DoD) recognizes the danger of COVID-19. The agency has pointed to the highly transmissible nature of COVID-19 as a threat that can overwhelm our health care systems and impair the operational readiness of the Armed Forces. In response to the dangers presented by the coronavirus pandemic, the agency issued Force Health Protection Guidance, most recently updated in August 2022, to reduce the spread of COVID-19 among military service members. Further, in the agency’s 2022 National Defense Strategy, the DoD identified COVID-19 as a risk in the security environment that impacts the U.S. defense industrial base and the Joint Force. However, the DoD has not yet confronted the impact that long COVID will have on the U.S. military’s operational readiness.
Research presented at the Infectious Disease Society of America’s October 2022 annual meeting by the Infectious Disease Clinical Research Program at the Uniformed Services University of the Health Sciences demonstrates how long COVID can degrade the health of our service members. The study found that one-third of active-duty service members reported new or increased difficulties with exercise and daily activities in the month following a confirmed COVID-19 infection. Additionally, 39 percent of active-duty service members reported that COVID-19 negatively impacted their physical fitness scores, with 34 percent reporting negative impacts to their physical fitness scores twelve months after infection.
While long COVID can have a severe impact on the physical fitness of adults who are active-duty service members, we are also learning about the long-term consequences of COVID-19 infection in children. Children in public schools have experienced some of the most significant impacts of the coronavirus pandemic, as they have endured among the highest rates of COVID-19 infection compared to members of the general population. Exposure to COVID-19, in combination with other respiratory viruses that cause post-infection sequelae, including influenza and respiratory syncytial virus (RSV), has caused an increase in adverse outcomes compared to previous winter seasons.
The U.S. Centers for Disease Control and Prevention (CDC) estimated in February 2022 that 75 percent of children have serologic evidence of prior COVID-19 infection. Based on data from a large population study conducted by researchers at the University of Dresden, Germany, children and adults have the same risk of experiencing long COVID symptoms in the 90 days following infection with COVID-19. A systematic review published in June 2022 found the prevalence of long COVID among children and adolescents to be 25 percent. Following COVID-19 infection, children are now developing post-infectious diabetes, cognitive impairment, and symptoms of ME/CFS. While we have made great strides in our understanding of COVID-19 and long COVID, we do not yet know the long-term impact that SARS-CoV-2 will have on an entire generation of children. These same children will be our future military leaders and defenders of democracy.
According to the National Center for Chronic Disease Prevention and Health Promotion (NCCDPHP) and the CDC, preventing and controlling chronic disease is a matter of national security. A fact sheet published by the CDC emphasizes how “the nation’s armed forces depend on men and women who are fit, healthy, and able to perform at their peak on or off the battlefield.” However, the CDC asserts that “active-duty military members (service members) and potential recruits are not immune to the health problems that affect the rest of the US population, and the impact on military readiness is substantial.” As long COVID threatens the health of both active-duty military members and children who are potential future military recruits, Congress must act swiftly to invest in the Department of Defense’s ability to advance biomedical research for long COVID, ME/CFS, and associated post-viral conditions. Investing in long COVID research and treatment for infection-triggered chronic illness is vital for protecting our national security, guarding the health of our nation’s children, and bolstering our military readiness.
Congressionally Directed Medical Research Programs
The Congressionally Directed Medical Research Programs (CDMRP) is a complete biomedical research pipeline housed in the Defense Health Program, which “fills research gaps by funding high impact, high risk and high gain projects that other agencies may not venture to fund.” Funding for biomedical research through CDMRP is allocated towards health conditions that have heightened relevance for military populations. The CDMRP’s Combat Readiness–Medical Research Program (CRRP) is a program that focuses on “research relating to forward-deployable solutions that can promptly address life threatening injuries and medical diagnostics, threats, and treatments, and medical threats and treatments for Service members in battlefield settings.”
Despite the relationship between long COVID and the military’s operational readiness, CDMRP has not yet received funding from Congress for research on long COVID. However, appropriators in the House of Representatives have reached consensus on providing funding for ME/CFS research within CDMRP in FY 2023. Given the close relationship between ME/CFS, long COVID, and post-viral illness generally, we believe that funding this research will achieve measurable progress towards the development of treatments for long COVID. Additionally, we believe that Congress must allocate this funding to protect our national security and the military’s operational readiness as the coronavirus pandemic continues to threaten the health of all Americans.
For the FY 2023 budget, the House Defense Appropriations Committee recommended inclusion of $5,000,000 for ME/CFS research within CRRP. We respectfully request that the Senate Appropriations Committee adopt the House Defense Appropriations Committee’s recommendation.
The House Defense Appropriations Committee also adopted report language recommending that the Assistant Secretary of Defense for Health Affairs “conduct research on long COVID and ME/CFS with a focus on issues related to military populations.” We respectfully request that the Senate Appropriations Committee adopt the House Defense Appropriations Committee’s report language.
Thank you for considering the inclusion of these amounts in the FY 2023 budget. Please contact me at firstname.lastname@example.org if you have any questions about our request or if you need any additional information.
Strategic Partnerships Manager
COVID Survivors for Change
Long COVID Families