Dear Official,

According to CDC officials, the agency is considering abandoning any semblance of a science-based isolation period for COVID-19 infection. CDC’s shift in policy to a single day of isolation would be an act of official misconduct that would promote infection and the development of Long Covid. This letter outlines SARS-CoV-2 forward transmission mitigation efforts that CDC must include in its public policy to avoid preventable deaths and Long Covid.

Furthermore, NIH has misled Congress in its efforts to tackle Long Covid. NIH has not outlined one serious viral persistence treatment trial for Long Covid, and worse, the agency is allocating a majority of funds to trials that do not specifically target the root-cause of Long Covid — a waste public funding. Harvard Economist David Cutler has determined that Long Covid requires at least an annual investment of $28bn, yet NIH continues to grossly underfund the development of treatments by committing only $128.75mn per year over the next four years.

By all available measurements on a four year timeline, COVID-19 deaths have exceeded the amount of HIV deaths while Long Covid has induced AIDS-like immune damage and mortality. It is estimated Long Covid will cost trillions to the US economy over the next five years if left untreated. We urge each of you reading this letter to first declare Long Covid an emergency in your capacity as decision-makers and fast-track funding for SARS-CoV-2 specific novel antivirals and immune therapies while repurposing existing antivirals for Long Covid. I beg you to act now before more lives are lost and before more children’s lives are upended by this disease.  

LCAP has tried to inform the Senate HELP Committee of these concerns. LCAP reached out to HELP representatives and the Biden Administration officials with phone calls and more than 400,000 letters of 11 demands from people with Long Covid.

After 4 years of meetings and hearings and a billion dollars spent, there are zero FDA-approved effective therapeutics. The situation is unacceptable. Senator Roger Marshall summed up the progress of NIH’s billion dollar spending on Long Covid to date as merely “forming committees and praying about it.” Meanwhile, Long Covid patient numbers grow daily by the thousands.

Children with Long Covid are depending on us to act. There is a lack of guidance regarding proper mitigations and the continuing minimization of the crisis by the CDC and NIH.

Long Covid is an emergency the likes of which our country, and indeed the world, have never seen. As such, we ask for the opportunity to discuss the following areas of greatest urgency. For the record, in addition to the LCAP demands we request a new HELP hearing include the following:

1. A representative from LCAP who is knowledgeable about the concerns of the Long Covid community and its allies.
   
   

2. Doctors and nurses from the frontlines of the pandemic who themselves were struck down by Long Covid;
   
   

3. Physicians who currently treat Long Covid patients, rather than exclusively working in research;
   
   

4. Researchers who look beyond the similarities to ME/CFS or other diseases and explore various theories such as viral persistence. A researcher we strongly support is Dr. Amy Proal, PhD, microbiologist and President of PolyBio Research Foundation. And finally,
   
   

5. Allow testimony from patients who are so severely affected that they are unable to leave their beds yet want to share their experience with HELP members via remote testimony. To date no accommodations have been offered to allow this patient cohort to speak before the HELP committee. We ask that these voices be heard.
   
   

I respectfully request you take action to meet the following 11 demands and you take measures to reconvene HELP.

Title: LCAP 2024 Cure Long Covid Demands (abbreviated version)

  1. Declare Long Covid a National Emergency: Long Covid is a National Security Threat

  2. Establish ≥$28 Billion in Funding for Long Covid Programs and Research to Find a Cure

      a. In November 2023, David Cutler, a health economist and professor of economics at Harvard University, verified to Public Herald’s investigative journalist Joshua Pribanic (also founder of LCAP) that an annual ask of $28 billion for Long Covid is reasonable, “an amount equal to HIV funding, i.e. $28 billion, would not be excessive. The benefits of a cure would be enormous, and the cost of research on the issue is modest.” Cutler added that the ongoing costs of Long Covid to the U.S. economy will be in the trillions, pending a cure. In October 2023, Harvard Economist David Cutler told the New York State Insurance Fund, "There is no amount of money the government shouldn't spend to fix Long Covid....there's no amount that's overdoing it."

  3. Mandate Nationwide Tracking of SARS-CoV-2 in Wastewater at POTWs (read the full letter details through the link provided at the end for specifics)

  4. Announce Clean Air Law to Prevent SARS-CoV-2 Forward Transmission

  5. Mandate Respirator Protection in Healthcare Facilities

  6. Demand Regular White House Press Communication Updates

  7. Establish a Permanent Entity to Expand and Accelerate Access to Prevention, Research, and Treatment of Long Covid

  8. Ensure Sufficient Social Support by the Following

  9. Urgent, Sufficient, and Sustained Progress Towards Ending the Long Covid Crisis

  10. Begin immediate assistance to Children with Long Covid by passing new SARS-CoV-2 specific legislation (i.e. for a new and novel virus tied to Long Covid) that meets the minimum annual funding of ≥$28 billion referenced in this letter by Harvard Health Economist David Cutler

  11. Ensure racial and gender health equity in research, access to clinical trials, preventative measures, educational campaigns, and social services

Thank you for taking the time to read this letter of demands to find a cure for Long Covid.

Please refer citations and further discussion to the following link to the original LCAP letter of 11 demands that includes an itemized list for each demand: https://longcovidactionproject.com/cure-long-covid-letter/.

Original Version

In November 2023, the U.S. Government data estimates over 23 million Americans have developed Long Covid. And studies suggest that number could be as high as 41 million. Today, there is no cure or treatment available. As the fastest growing disease in America, this is a national emergency and a national security threat that needs action now.

Therefore, I in solidarity with the Long Covid community demand that your political office take immediate action to respond to these demands to help find a cure and social support structure for Long Covid. Specifically, the following demands have been prepared by LCAP and I ask that you issue a statement of response to LCAP and myself in which you consider the following points:

LCAP 2024 Cure Long Covid Demands

1. Declare Long Covid a National Emergency

1. Long Covid is a National Security Threat with respect to the following:

1. Current CDC estimates have found roughly 15% of Americans experienced Long Covid as of September 2023, with a 2022 Household Pulse Survey reporting nearly 1 in 5 people in the U.S. who’ve had COVID-19 still have Long Covid. In 2023 this crisis continues to grow — at the very least 23,162,662 people nationwide now have Long Covid. Long Covid is attacking and debilitating our workforce, our children, our families, our front line workers, our first responders and our military.

2. To date, SARS-CoV-2 viral persistence research has warned that new variants could have the chance to mutate with older variants and allow for an even more dangerous version of the virus to be produced.

3. It is crucial for the federal government to address Long Covid in order to reduce the spread of viral resistance to also protect current and future controls such as Paxlovid and vaccines.  

2. Currently there is no cure for Long Covid. A new federal declaration of national emergency for Long Covid would allow FDA EUA to fast track approval of drugs; enable Long Covid patients to see specialized doctors across state lines; and expand ability of doctors and Long Covid patients to communicate more quickly and safely via telemedicine and remote technologies.

3. Furthermore, Admiral Rachel Levine, MD, Assistant secretary for health in the Department of Health and Human Service (HHS), told Yale researchers Long Covid is a public health crisis:

1. “Q: First of all, do you believe that Long Covid is a public health crisis?

2. "Yes, Long Covid is a very significant public health issue that we are working to address through the federal government in collaboration with the states and local health departments, as well as with academic medicine and researchers.”

2. Establish ≥$28 Billion in Funding for Long Covid Programs and Research to Find a Cure

1. In November 2023, David Cutler, a health economist and professor of
   economics at Harvard University, verified to Public Herald’s investigative journalist Joshua Pribanic (also founder of LCAP) that an annual ask of $28 billion for Long Covid is reasonable, “an amount equal to HIV funding, i.e. $28 billion, would not be excessive. The benefits of a cure would be enormous, and the cost of research on the issue is modest.” Cutler added that the ongoing costs of Long Covid to the U.S. economy will be in the trillions, pending a cure.
   

2. In October 2023, Harvard Economist David Cutler told the New York State Insurance Fund, "There is no amount of money the government shouldn't spend to fix Long Covid....there's no amount that's overdoing it."

1. He estimates that the total cost to GDP as of July 2022 was 3.719 Trillion, with 544 Billion in additional costs annually. Using his calculations, total costs due to Long Covid could reach 8.343 Trillion by 2030.

3. Long Covid researchers published an October 2023 paper saying that the driving force behind Long Covid is SARS-CoV-2 viral persistence. For HIV/AIDS, another disease with a driving force of viral persistence, Congress is actively spending $28 billion annually for a population of 1.2 million people. Yet, currently Long Covid has zero annual funding from Congress to meet the needs of this emergency for the more than 23 million people affected. We ask that Congress fast track federal funding to meet the needs of Long Covid by passing new SARS-CoV-2 specific legislation (i.e. for a new and novel virus tied to Long Covid) to support the following:

1. Health and Human Services (HHS), Advanced Research Projects Agency for Health (ARPA-H), Housing and Urban Development (HUD), Justice, Veterans Affairs (VA), and Department of Defense (DoD). Within HHS, in particular, create responsibility for Long Covid programs and services to spread across multiple agencies including the Centers for Medicare & Medicaid Services (CMS), the Health Resources and Services Administration (HRSA), the Centers for Disease Control and Prevention (CDC), the Substance Abuse and Mental Health Services Administration (SAMHSA), the Indian Health Service (IHS), the Food and Drug Administration (FDA), a new Office for Long Covid Policy, and others. Responsibility for Long Covid research would be considered to be led by the National Institutes of Health (NIH); in addition, CDC, VA, Defense, and the United States Agency for International Development also support research initiatives.

2. Within the Advanced Research Projects Agency for Health (ARPA-H) in particular, create high risk high reward research grants to support research initiatives.

3. Mandate Nationwide Tracking of SARS-CoV-2 in Wastewater at POTWs:

1. In 2023, virologist Marc Johnson found cryptic lineages (i.e. viral persistence of old SARS-CoV-2 variants) in public wastewater. This research indicated some people carried old variants of the virus in their guts for years, highlighting the risk for new variants to mutate with older dangerous variants. This is a critical national security threat that demands all POTWs in the country report the viral load of SARS-CoV-2 to the public to protect the health of the nation. We demand immediate measures be taken at the federal level to mandate daily tracking of SARS-CoV-2 in wastewater.

2. Reinfection is a serious risk for people with Long Covid. Daily tracking of SARS-CoV-2 in wastewater will give people with Long Covid and the general public some precautionary measures to protect themselves from reinfection.

4. Announce Clean Air Law to Prevent SARS-CoV-2 Forward Transmission

1. Pass new SARS-CoV-2 specific legislation (i.e. for a new and novel virus tied to Long Covid) for permit standards and mandates within public schools, medical facilities, and public transit to mitigate forward transmission of SARS-CoV-2.

2. Detecting and filtering SARS-CoV-2 airborne spread is a national security issue that needs to be tracked and carefully monitored.

5. Mandate Respirator Protection in Healthcare Facilities

1. Instruct federal agencies to establish respirator mandates in healthcare facilities, as well as healthcare education about respirator use, to prevent the forward transmission of SARS-CoV-2.

2. COVID-19 infections can be both fatal and lead to Long Covid and worsening of Long Covid. At least one person dies every 3 minutes from COVID, and Long Covid is a mass disabling event affecting over 65 million people globally. The latest research has shown that without a mask in a hospital setting the risk of exposure to SARS-CoV-2 was over 80% — wearing a surgical mask left a 35% risk of infection. Two-way masking with an N95 respirator brought this infection risk down to a level close to 0%.

6. Demand Regular White House Press Communication Updates:

1. Realistic and transparent Long Covid numbers are needed. This requires improved testing of SARS-CoV-2 and its new variants, as well as ensuring Long Covid sufferers have access to knowledgeable health care providers. Family physicians as well as health care providers and physicians in every specialization must be provided with regularly updated guidance documentation on symptoms, biomarkers, and latest guidelines for testing, diagnosing, and treating Long Covid patients, and must accurately report on Long Covid numbers to NIH/CDC.

2. We urgently need to make the public aware of this crisis, the risks of developing Long Covid, how to recognize Long Covid and seek treatment, and the steps being taken to end the crisis.

3. Specific, regular updates on progress towards Long Covid objectives are necessary.

4. Regular tracking and communication to the public is required for risk assessment of nosocomial infections of SARS-CoV-2 in hospitals and health care settings. Because Long Covid patient reinfections with SARS-COV-2 create major health setbacks in immunocompromised individuals, many Long Covid patients avoid needed health care. Restoring public trust in the safety of health care settings requires improved testing and tracking of the results of accurate and updated rapid antigen testing to be provided for free in all health care settings; and requires clean air tracking at hospitals and doctors offices with publicly posted CO2 readouts. Also establish screening for COVID as standard practice during ER, urgent care, and other medical appointments so that later Long Covid onset is easier to diagnose.

7. Establish a Permanent Entity to Expand and Accelerate Access to Prevention, Research, and Treatment of Long COVID

1. E.g. “President’s Emergency Plan for AIDS Relief, PEPFAR, is both a model and a platform that can be used right now. PEPFAR saves lives, prevents new infections, and accelerates progress toward achieving pandemic control around the world.] ‘It would be a shame not to use the PEPFAR program for greater functions. There’s just not a chronic care platform that can compete with it,’ said Thomas Bollyky, the director of the global health program at the Council on Foreign Relations.”

2. A government-supported clinical trials infrastructure for Long Covid research must be established for overseeing Long Covid research and grant funding, with an oversight office for establishing and running a nationwide network of specialized Cooperative Centers of Excellence in Long Covid. At these research/clinical centers, Long Covid patients will be able to receive state of the art treatment, and participate in research and clinical trials.

3. Establish peer review funding process that is structured to have scientific and community representation by multiple Long Covid patient groups as well as expert reviewers without conflicts of interest such as pharmaceutical company connections. Funded research should prioritize trials of off-label use of approved drugs and of drugs with patents that have expired, as well as drugs approved in foreign countries. Higher prioritization for funding should be given to drug trials aimed at cures, research establishing biomarkers, and studies exploring viral persistence. Lower prioritization for funding should be given to exercise trials, meditation studies, and non-interventional studies such as patient observations and survey research. Prioritize viral load or tissue penetration/affected organs tests such as PET scanning, as well as combination therapy antivirals, spike/antigen detection and reduction treatments, SARS-CoV-2 sterilizing vaccines, and common autoantibodies detection and modulation.  

4. Address equity issues in access to Long Covid treatment and clinical trials. Fund trials with support for travel to the study and lodging for patients, designing inclusive clinical trials providing access to people of all age groups and from all communities, and removing discriminatory barriers to clinical treatment and clinical trials such as requirements of a positive COVID test which excludes people whose illness was in 2020 before testing was available, as well as the many patients after 2020 who could not afford to purchase tests and for whom no free tests were available.

5. Ensure that those injured from coronavirus vaccines are not excluded from government funded research. And that those who are vaccine injured who are currently a part of RECOVER’s program for Long Covid are identified and studied within a vaccine cohort.  

8. Ensure Sufficient Social Support by the Following:

1. Mandate and provide regular widespread education of primary care providers in Long Covid presentations, pathogenesis, viral persistence, and co-diagnoses. This is key for access to symptom management, referral to specialists for needed testing, and obtaining documentation for financial support and workplace accommodations. Remove insurance company delays and treatment barriers such as unnecessary pre-authorization requirements, and requirements imposing delays to complete unneeded lesser tests or scans in order to be approved for the essential tests and scans, such as requiring a CT scan first in order to get a needed MRI scan.

2. People presenting with Long Covid symptoms must no longer be turned away from hospitals and medical offices with gaslighting, erroneous diagnoses of mental health or functional neurological disorders. Patients with Long Covid symptoms will receive clinical workups including expanded lymphocyte T and B cells and monocyte blood panel testing, total immunoglobulin levels, postural orthostatic tachycardia evaluation, MRIs/CT scans, and cognitive testing, and based on results will be provided further vasculitis examination, cardiac workups with endothelial and coagulation biomarker checks, pulmonary evaluations, flow cytometric microclots testing, autonomic nervous system/neurological tests and scans, and referral to Cooperative Centers for Excellence in Long Covid for viral persistence PET imaging and other specialized testing and treatments. Patients with Long Covid symptoms will also be evaluated with SARS-CoV-2 viral load and/or spike antigen testing in blood/plasma and tissue; and with scanning for cancers and accelerated onset of osteoporosis, and reactivated infections such as EBV, CMV, Lyme and tick borne infections, candida, VZV, HSV, and treated with antibiotics, antivirals, antifungals, and immunoglobulin as appropriate.

3. Investigate how people who are too sick to earn reliable income are surviving during the years’ wait to be approved for SSDI or SSI. Devise a program to close any gaps in support. For example, make cash assistance programs sufficient to cover basic expenses, automatic when applying for SSDI/SSI, as well as available earlier when the chronically ill and disabled are still searching for knowledgeable doctors. Fast track through SSDI for Long Covid - QDD Quick Disability Determinations and Fast Allowances to cut wait times from years/months to weeks/days; Remove asset income limits for access to SSDI — also see HIV AIDS SSDI eligibility.

4. Investigate how employers and healthcare providers are treating reasonable accommodation requests by Long Covid patients. Devise strategies and/or regulations to ensure Long Covid sufferers are not penalized for their accommodation needs. Enforce protected class status for people with Long Covid as disabled. People with Long Covid are immunologically damaged and wear masks as a tool to protect themselves from further damage just as people with organ transplants or cancer wear masks due to immune system issues. People with Long Covid who ask for staff members to mask when interacting with them should be treated the same as other disabled people such as transplant patients and cancer patients who have severe immune system deficiencies. Provide added tools and treatments that help Long Covid patients maintain functionality for employment, such as inhalers, nebulizers, cpap machines, home blood pressure monitors, pulse oximeters, N95 respirators, medications, updated and accurate RAT testing, and clean air mitigations in workplace, school and healthcare settings such as HEPA air filtration, Corsi-Rosenthal boxes, upper air UV and ventilation solutions, Establish and ensure protected ADA class status for Long Covid disability in employer accommodations - - see HHS Long Covid disability info.

9. Urgent, Sufficient, and Sustained Progress Towards Ending the Long COVID Crisis by:

1. Sustained, sufficient funding for key research avenues to find a cure for Long Covid as outlined by consultations with Polybio.

2. As each biomarker is agreed upon, testing for it must be made accessible to all patients. Disproven and harmful approaches like graded exercise therapy and cognitive behavioral therapy should not be funded, as per Long Covid Physio and the World Health Organization.

3. Immediate, adequate, and sustained funding to determine the extent of viral persistence, and to develop antiviral treatments that work against SARS-CoV-2. Antivirals and monoclonal antibodies need COVID EUA fast track approval for Long Covid patients, who are at high risk for acute COVID reinfections and should receive access to monoclonal antibodies, prophylaxis monoclonal antibodies, as well as Paxlovid (including extended courses), and vaccines with alternatives to spike as antigen.

4. A permanent hub within NIH for complex chronic conditions, including (but not limited to): Long Covid, and for Long Covid associated infections (acute and reactivated) and secondary conditions.

10. Begin immediate assistance to Children with Long Covid by passing new SARS-CoV-2 specific legislation (i.e. for a new and novel virus tied to Long Covid) that meets the minimum annual funding of ≥$28 billion referenced in this letter by Harvard Health Economist David Cutler

1. Decisions about Long Covid should be centered on children and their story must be pushed to the top of the discussion for how decisions are made and legislation is passed.

11. Ensure racial and gender health equity in research, access to clinical trials, preventative measures, educational campaigns, and social services.

1. Social determinants of health research has shown a significant relationship between race, ethnicity, gender, and propensity to develop Long Covid due to complex social and biological factors. For example, Black and Hispanic Americans are disproportionately likely to develop Long Covid compared with white counterparts and more research about the impact of Long Covid on the Native American community is necessary. Account for these racialized and disparities in Long Covid pathophysiology and prevalence by ensuring equal representation in and access to research and affording equivalent and appropriate resources for racialized person’s health issues.

2. Research from the Centers for Disease Control demonstrates that Black Americans are 20% more likely to suffer from asthma, including experiencing fatality rates nearly 8 times as high as white counterparts. Black Americans are more likely to not only experience Long Covid symptoms but Black mortality associated to SARS-CoV-2 is disproportionate. However, the confluence of asthma with Long Covid in the Black community is under-researched. Leverage the US Department of Health and Human Services Office of Minority Health to conduct research into the confluence of environmental racism, asthma, and Long Covid lung disease in the Black and racialized communities. Support educational outreach to community members and healthcare providers concerning the confluence of Long Covid and asthma.

3. Given that women are more likely to develop Long Covid, at a rate potentially three times higher than men. Conduct research into the confluence of 1) pervasively female autoimmune disease and Long Covid and 2) female sex hormone mediated Long Covid including the influence of sex hormones on coagulation and hyperinflammatory responses, or other factors that may cause this disparity.

4. Ensure educational campaigns, social services, and clinical trials involve racialized communities appropriately and equitably. For all research, ensure racial equity in training datasets by sampling according to the US Census or other equivalent calculation of the real proportion of a group in the population. Inverse probability or RIM weighting can be used to account for discrepancies in a sample. Ensure discrepancies in healthcare access or other forms of difference or adversity are accounted for in modeling, for example, disparities in access to nutrition, public transportation, or exposure to environmental pollutants. Ensure randomized control trial patient matching algorithms include race, ethnicity, and gender as matching variables to ensure clinical trials are not inappropriately biased against marginalized groups, unless the trial is explicitly testing a particular racial, ethnic, or gender-based group. Include analysis of potential racial bias in the evaluation of research methods and statistical models. Follow all other established best practices in removing racial bias from medical machine learning and medical research.

***

Reference for Long COVID Economic Numbers:

A summary of the most frequently cited statistics regarding the economic impact of Long Covid. The Wall Street Journal’s article “Over Two Million Americans Aren’t Working Due to Long COVID” from August 25, 2022, states:

• “Between two million and four million Americans aren’t working due to the long-term effects of Covid-19, according to a new Brookings Institution report released Wednesday.”

• “David Cutler, a health economist and professor of economics at Harvard University, has also calculated the economic cost of long Covid. According to his estimates, the total cost is $3.7 trillion.”

• “The inability to work translates to roughly $170 billion a year in lost wages, the report estimates.”

• “It follows a January Brookings Institution report that estimated long Covid was potentially causing 15% of the country’s labor shortage.”

• “The report estimates that roughly 16 million Americans of working age—between 18 and 65—have long Covid…”

References

Backman, I. (2023, February 16). Admiral Rachel Levine Visits Yale’s Long COVID Experts. Yale School of Medicine. https://medicine.yale.edu/news-article/a-qanda-with-admiral-rachel-levine-on-tackling-long-covid/

Bass, E. (2022, June 4). Opinion | PEPFAR Shows What a Global Response to Covid Can Look Like. The New York Times. https://www.nytimes.com/2022/06/01/opinion/pepfar-covid.html

Davis, H. E. (2023, January 13). Long COVID: major findings, mechanisms and recommendations. Nature. https://www.nature.com/articles/s41579-022-00846-2?error=cookies_not_supported&code=3fa87faa-ff5a-4712-b22f-cc0925c22262

Reddy, S. (2022, August 25). Over Two Million Americans Aren’t Working Due to Long Covid. WSJ.https://www.wsj.com/articles/over-2-million-americans-arent-working-due-to-long-covid-says-brookings-11661364528

Science & Tech Spotlight: Long COVID. (2022, March 2). U.S. GAO. https://www.gao.gov/products/gao-22-105666

Sellers, F. S. (2022, October 13). ‘We are in trouble’: Study raises alarm about impacts of long covid. Washington Post. https://www.washingtonpost.com/health/2022/10/12/long-covid-study-scotland/

Study shows prevalence of Long Covid in a university community. publichealth.gwu.edu. (n.d.). Retrieved February 20, 2023, from https://publichealth.gwu.edu/content/study-shows-prevalence-long-covid-university-community

Wang S, Li Y, Yue Y, et al. Adherence to Healthy Lifestyle Prior to Infection and Risk of Post–COVID-19 Condition. JAMA Intern Med. Published online February 06, 2023. doi:10.1001/jamainternmed.2022.6555.