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Health, Education, Labor, and Pensions Committee

428 Senate Dirksen Office Building, Washington, D.C.

January 17, 2024

​

On behalf of the COVID-19 Longhauler Advocacy Project, a grassroots, all volunteer, patient-led 501(c)(3) nonprofit organization serving the Long COVID community, please accept this letter for the record for the HELP Committee hearing on “Addressing Long COVID: Advancing Research and Improving Patient Care” occuring on January 18, 2024.

 

As America attempts to pursue a post-pandemic landscape, the COVID-19 pandemic continues to cast a very long shadow on its future through Long COVID. Long COVID refers to the symptoms or complications after the acute phase of COVID-19. Reinfections of COVID-19 increase the chance of developing Long COVID, or experiencing worsening Long COVID and other health conditions. [1] Long COVID has been found to impact between six and thirty percent of people who develop COVID-19. [2,3] For context, six percent of the U.S. population is approximately twenty million people, while thirty percent is nearly one hundred million people who may have Long COVID. Therefore, the estimated number of individuals who may have Long COVID is between twenty and one hundred million. The number which COVID-19 Longhauler Advocacy Project (C19LAP) has found most accurate is one in five, or twenty percent, which equates to nearly sixty six million people with Long COVID in the United States alone. [4]

 

Let us give that number the space it deserves; Sixty Six Million Americans.

 

COVID-19 Longhauler Advocacy Project estimates, based on calculations from our January 2022 Open Letter to National Leadership, including the HELP Committee, that as of January 2024 and inclusive of inflation, Long COVID is costing $2.64 Trillion dollars per year, solely in lost income and direct medical costs to the patient. [5,6] This number does not account for the Long COVID care costs associated with support services such as food and housing assistance, Medicaid and Medicare, or the costs to healthcare systems, insurers, and employers. Harvard economist, Dr. David Cutler, has updated his estimates on the “Cost of Long COVID” in July 2022 from $2.6 trillion to $3.7 trillion. [7,8] Annual costs of Long COVID easily exceed $5 trillion dollars per year and will cost $50 Trillion dollars over the next ten years. It is time to invest billions now, for a long-term investment into solutions for Long COVID, and COVID prevention, and save trillions down the road, while also saving tens of millions, if not hundreds of millions of lives, preventing economic, labor force, and medical system catastrophe, and preparing us for future pandemics and public health crises.

 

Long COVID is a multisystemic, often disabling infection-associated chronic condition that can impact anyone, regardless of health status, age, sex, or race. [9,10,11, 12,] Long COVID research currently suggests Long COVID is a result of a collection of mechanisms such as viral persistence, immune dysfunction, and autoimmunity. [13-20] Many with Long COVID have been sick since 2019 and 2020, and continue to watch more progressively fall victim to failed public health messaging about the disabling and deadly consequences of a COVID-19 infection. Thousands of people have died as a result of Long COVID, of which current numbers are likely greatly underestimated, and millions more have become disabled from Long COVID and its associated conditions. [21] Long COVID can reflect a wide variety of symptoms and conditions, such as autonomic dysfunction, mast cell activation syndrome, myalgic encephalomyelitis/ chronic fatigue syndrome, amongst many others, but as time goes on, we are seeing more and more evidence of cancer, cardiovascular disease, organ damage, and other longitudinal outcomes surfacing within the community. We have not been accurately documenting, analyzing, planning for, or making provisions for these outcomes, and need to rapidly implement strategies to do so. [22-31] 

 

There is no more funding for Long COVID research. 

 

The medical system has already collapsed as Long COVID patients wait years for care and access to specialists. There are not enough clinicians available let alone familiar with Long COVID or Infection-Associated Chronic Conditions ( IACCs) to attend to the Long COVID community. Those without Long COVID experience adverse outcomes as their care is now delayed by the influx of millions more acute and chronically ill patients due to COVID-19. Postponed care for things such as cancer screening, cardiac procedures and more, due to the lack of mitigations to access safe healthcare, have and will continue to compound disability and deaths. 

 

COVID deaths are estimated to occur at 1% of infections, which we feel is an underestimate. Currently, with 1,500 deaths per week, we are looking at at least 150,000 new COVID-19 cases per week. Therefore, America is facing approximately 30,000 Long COVID cases per week based on the aforementioned one in five rate of Long COVID development which can be further increased by reinfections. 

 

We have “normalized” disability and mass death from COVID-19..

 

If we lost this many people on planes, and cruises, and at sporting events, there would be major revisions and oversight implemented to prevent the losses.

 

1,500 deaths per week is 214 people per day, which equates to one full plane, or eight classrooms. 

6,000 deaths per month, the equivalent to two full cruise ships filled with people. 

72,000 deaths per year, the equivalent of the entire Notre Dame Football Stadium packed with people. 

 

150,000 COVID-19 cases a week, and 30,000 new Long COVID cases per week, we are potentially disabling 71 school buses full of people per day. 

 

This is not acceptable or sustainable.

 

We need major revisions and oversight implemented to address the COVID-19 pandemic and Long COVID. 

One of the biggest factors in our failure to address the COVID-19 pandemic and Long COVID lies in the missing public awareness and education on a national level. People are unable to make knowledgeable decisions about the disease and its associated conditions because of this lack of awareness, and many are also unaware of the very real, continued threat due to increased rates of hospitalization, death, and severe acute illness. Recent public messaging has moved to “we have the tools” and all Americans have equitable access to said tools, all while recent research published shows that neither vaccinations nor Paxlovid reduces the risk of developing Long COVID. [32-33]

 

Despite this research, the public is not being advised to practice well-researched mitigation practices such as masking and are therefore not able to make well-informed decisions for themselves and their families. Mass public awareness and education campaigns about Long COVID and its associated conditions are essential to increase awareness about the possibility of, or to identify, Long COVID, which helps us:

  1. Identify having Long COVID, document having Long COVID, and surveil Long COVID cases nationally.

  2. Allocate sufficient funding towards prevention, clinical care, research, and support services

  3. Perform more efficient, meaningful, unbiased research that can result in progress and solutions for Long COVID and beyond, and help to address future pandemics.

  4. Decrease stigmatization of Long COVID and other Infection-Associated Chronic Conditions.

 

The majority of the public remains unaware of Long COVID due to our failure to provide them with potentially life saving information. Many still have never heard of Long COVID, because their new symptoms and conditions are not yet recognized as Long COVID by themselves or their medical providers, and their Long COVID case is therefore not accurately documented, especially if ICD-10 Code U09.9 is not used by their clinician. These patients are experiencing significant impacts to their activities of daily living, and continue to go without help and proper documentation necessary for support services and medical care. We are nearly four years into the pandemic, and we have people contact us every single day who have been sick for months or even years. The lack of recognition and understanding of a mass disabling event and its consequences, impacting tens of millions in the U.S. alone, is unacceptable.

 

Long COVID demands that clinicians across the globe put in monumental effort to learn about Long COVID and its associated conditions to care for the millions directly as well as those indirectly impacted by the adverse outcomes to those beyond the Long COVID community, including clinicians themselves. 

 

A special emphasis needs to be paid to workers with unions failing to act on behalf of those they represent, such as those in healthcare, first responders (Fire, EMS, Police), and educators. 

 

Seasoned expertise in these fields is a necessity, and significantly impacts lives. When we lose these professionals, it impacts the entire field and has a ripple effect through our communities putting lives unnecessarily at risk. Additionally, these individuals have mostly dedicated themselves to helping others, only to find themselves lacking support when they need it, including losing access to pensions they have worked for throughout their entire careers, and have depleted their savings just trying to survive after losing their jobs. 

 

Another area of emphasis needed is on workers compensation in these fields, as well as others, to establish safety nets for those who risk their lives daily to care for the public. The U.S. Military has recognized the threat Long COVID plays in terms of our nation’s safety and security. This has led to the VA leading some of the largest Long COVID research studies to date. However, we have fallen short in recognizing the risks posed to public safety and education within our own communities. This past week, the New York City Fire Department (FDNY) reinstated mandatory masking for FDNY team members interacting with patients. [34] While we wish this policy included personnel at FDNY stations, we still applaud this step as a display of the leadership we need more of during the second largest COVID surge since 2020.

 

To date, there are no cures or approved treatments for Long COVID. 

 

There are no cures and very few treatments available for some of its associated conditions. 

 

We need a massive investment into research, especially pathophysiology, etiology and drug development, as well as clinical care that is inclusive of clinician education and coordination, support services, and basic, overall Long COVID public awareness and education. 

 

We need medications and treatments that target viral persistence, immune dysfunction, and autoimmunity, as well as acute COVID infections to prevent not only severe acute illness, but Long COVID and its disabling effects. 

 

We need much better data and analysis of prevalence of Long COVID, which must be done on a large-scale national effort to inform long-term funding needs and goals. 

 

We need longitudinal Long COVID studies lasting ten to twenty years to follow Long COVID patients into the future to see what impacts occur down the road. We know from extensive research into SARS-COV-1 that many faced post-acute sequelae of SARS-COV-1 symptoms for a decade and longer and were not studied adequately. [35-38]

 

Crucially, we must prioritize investing in the prevention of COVID-19 infection. The belief that herd immunity provides protection is dangerous and misinformed. Unfortunately, we currently lack effective tools and there is no funding available for developing such tools. Meanwhile, an increasing number of people in the United States, surpassing sixty-six million with each infection and reinfection, endure the loss of health, careers, families, and more, all while awaiting significant and meaningful government action. 

 

We need more in 2024.

 

The COVID-19 Longhauler Advocacy Project Ten Year Funding Request:

  1. Funding for Long COVID Research: $50 Billion [10 Years] 

    1. At least $3 Billion dollars annually for ten years which must include a 10-year study on longitudinal outcomes in Long COVID, pathophysiology/ etiology, and surveillance/ prevalence. 

    2. Examples of rapid research action can be replicated from the Ryan White Care Act. 

    3. Additionally, we request $2 Billion dollars annually for research into similar Infection-Associated Chronic Conditions (IACCs). 

  2. Funding for Long COVID Clinical Education & Care Coordination inclusive of Social Determinants of Health: $30 Billion [10 Years]

    1. At least $3 Billion dollars annually for ten years which must include medical school curriculum, mandatory clinician CME’s for recertification, expansion of/ incentives to enter the Long COVID/ IACC field, hands on training, and other venues of delivery such as conferences, grand rounds, and similar. Overall, this will cut down costs to the patient, the center/ clinician, and the insurer/ payee, while improving QoL, providing quality care, and promoting cross-sector learning and collaboration between clinicians and those in support services. 

  3. Funding for Long COVID Public Awareness and Education Campaigns: $20 Billion [10 Years]

    1. At least $2 Billion dollars annually for ten years which must include a plan for public awareness and education campaign regarding COVID-19 and other viral illness mitigation.  

  4. Funding for Training of Medical Providers in Educational Institutions: $550 Million [10 Years]  

    1. At least $55 Million dollars annually ($1 Million each U.S. state and territory), to train school nurses, educators, and counselors on Long COVID and its associated conditions in children/ students for ten years. As we are just beginning to see the developmental impacts of COVID-19 infections on children and given what we already know regarding the impacts of Long COVID on Adults, schools will be an essential place to recognize and manage Long COVID. It is essential we carve funding to ensure students are getting the assistance and accessibility they need to fulfill their right to an education.

  5. Funding to Strengthen Social Safety Net due to Long COVID Influx: $8 Million [10 Years]

    1. At least $8 Million to each U.S. state and territory annually for ten years to (1) increase social support/ services programs, such as state-based disability programs, housing, food, medical costs, debt relief due to medical costs, childcare and more, bolster rural healthcare systems, invest in community health centers, telehealth, and mobile units, and (2) implement an Office for Long COVID at their respective center for independent living to assist Long COVID patients with access to education, resources, and support services.

 

We need a minimum of $105 Billion Dollars over the next ten years to address Long COVID.

 

The COVID-19 Longhauler Advocacy Project also requests the following:

  1. Long COVID Awareness Day on March 15th: Recognize and name March 15th as Long COVID Awareness Day as Long COVID organizations have called for across the globe. Assist in raising awareness by lighting up monuments and buildings to raise awareness about Long COVID. Additionally, formally name the first Monday of March as COVID Remembrance Day. [39] Millions have been lost and affected and should be respected enough to be recognized and supported.

  2. 2024 State of the Union Address: Long COVID must be discussed at the 2024 State of the Union Address. It is the largest opportunity to educate the masses and provide them with information needed to make informed decisions about their health and lives. Long COVID patients should also be represented at the State of the Union, and President Biden should directly meet with Long-Haulers to educate himself on our circumstances and needs.

  3. Funding for the Office of Long COVID Research and Practice: Increase and extend funding for the Office for Long COVID Research and Practice for at least ten years, and expand duties, actions, and staff. We would additionally like to see funding for an Office for Infection-Associated Chronic Conditions within NIH. 

  4. Long COVID Legislation: Create and pass legislation making COVID-19 a presumed “on the job infection,” similar to the “Heart and Lung Bill,” and create a Long Covid Fund similar to 9-11 Victims Compensation Fund. Additionally, draft and pass legislation creating universal/ national workers compensation coverage, rights, and oversight. Get rid of state-based oversight and laws, especially for first responders, healthcare workers, and educators, especially during public health crises. 

  5. COVID-19 Mitigation and Treatment: Now is not the time for rescission of pandemic COVID funds nor decreasing resources and “tools” to address an ongoing pandemic and mass disabling event. It is crucial to invest in public messaging to educate people so they can make informed decisions. Investment and normalization for the public of wearing high-quality masks, access to updated and reliable testing methods based on the continued evolution of the virus, updated and efficient treatments for acute COVID-19, as well as equitable, free access to them for everyone regardless of insurance coverage or lack thereof. Invest into clean air solutions, especially in schools, the workplace, and public transportation. Any and all COVID-19 funds that are unused and being clawed back must be put towards addressing Long COVID.

 

Despite our best efforts to move past the pandemic, we are still facing an ongoing public health crisis and mass disabling event due to COVID-19 that is compounding daily, with no end in sight. 2024 is a pivotal year to change course and address Long COVID and COVID-19.

 

The level of disability seen in Long COVID is extreme with most people in this country lacking accessible healthcare, knowledgeable clinicians, nonetheless scarce treatments and trials. 

 

The existing lack of funding poses a significant barrier for the sixty-six million people in the United States who are enduring substantial suffering, and have been seeking help desperately for years. 

 

Each of you have a growing group of constituents, equal to the current population of Black and Latinx American voters, who are unable to work in any capacity due to Long COVID. 

 

This includes both those already affected as well as new individuals who, unfortunately but inevitably, continue to join our community on a daily basis. 

 

Their number one question is; 

“Why isn’t anyone telling us about this?”...and the number asking is growing larger and louder.

 

The Health, Education, Labor, and Pensions Committee must act to address the devastating, continuously compounding impacts of Long COVID, and the COVID-19 pandemic. 

 

COVID-19 Longhauler Advocacy Project is requesting at least $105 Billion over ten years to address Long COVID with additional funds needed to address the COVID-19 pandemic itself, as well as other requests that will aid solutions for Long COVID. We need you to urgently, sufficiently and meaningfully take action on Long COVID and the COVID-19 pandemic.

​

The U.S. continues to allocate and fund hundreds of billions of dollars overseas for war, but will not invest in fighting the war here at home, killing 1,500 and disabling tens of thousands a week. 

 

Long COVID needs more in 2024. Take action now. Lead by example. HELP us.

 

Sincerely,

Karyn Bishof

Founder & President, COVID-19 Longhauler Advocacy Project

 

 

References​

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