Dear HELP Senate Committee,

Despite what you’ve heard during the HELP hearing testimonies about Long Covid on January 18, Long Covid is a novel disease that’s believed by the top researchers in the United States to be driven by SARS-CoV-2 viral persistence.

Long Covid Action Project (LCAP) is pleased that the Senate HELP Committee took time to hold a hearing for Long Covid. But it is clear in the recording that you were provided with disinformation about our disease by those who testified. LCAP is the largest grassroots united, diverse force of non-partisan individuals taking action to end the Long Covid crisis through awareness and government accountability. Members of LCAP took direct action to disrupt the January 18 HELP committee hearing because they feared the SARS-CoV-2 (SARS2) viral persistence science and needs of many suffering Long Covid were NOT represented by the HELP witnesses and their special interests.  

We understand that only a small number of voices within the Long Covid community were able to testify at the hearing. Be that as it may, no one at the hearing represented LCAP. Our members, who include a range of phenotypes and severity, feel it is imperative that you hear our voices as well. LCAP asks that another HELP Committee hearing be held without delay, with virtual testimony options for those severely ill (as well as accessibility options for everyone to attend the hearing), for Long Covid experts like Dr. Amy Proal to testify, and for LCAP to provide Senators a comprehensive view of the Long Covid science and economic facts this emergency presents. We request a new 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 bed yet want to share their experience with HELP members via remote testimony. Those who experience a chronic Covid infection can suffer various degrees of disability, an increased risk of severe cardiovascular outcomes, cancers, opportunistic infections, immune dysregulation, immune exhaustion, immune deficiency, and widespread organ and tissue damage. 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.

It is now clear that both researchers and advocacy organizations representing diseases outside of Long Covid were present at the hearing and coached by ME/CFS groups such as MEAction who have co-opted our funding and messaging on Long Covid to Congress. For example, MEAction has discussed openly how they “worked behind the scenes to advise a number of committee members on their testimonies,” while at the same time ensuring that LCAP had no access to assist in those testimonies.

As a consequence, viral persistence of SARS-CoV-2, again what researchers believe is behind the disease of Long Covid, was only mentioned three times at the hearing. Meanwhile, terms such as Infection Associated Chronic Conditions (IACC), ME/CFS, and post-viral — all of which have a history of not focusing on SARS-CoV-2 viral persistence — were mentioned 37 times during testimony. This biased representation, which is unknown to the general public, was immediately clear to those of us who’ve been fighting for novel and repurposed antiviral trials and research at NIH and elsewhere to treat Long Covid.

Angela M. Vázquez, the first witness to testify at the hearing, attempted to persuade the Senate that Long Covid is “nothing new” in favor of focusing on ME/CFS. Vasquez afterward published a post on X saying their “hot take” is that “#LongCovid is a political identity not a disease in of itself.”

Vázquez’s “hot take” is not a position supported by serious scientists.

Joshua Pribanic, an investigative journalist and founder of LCAP, has published that one of the leading Long Covid scientists — Dr. Amy Proal of the Polybio Research Foundation — is clear that Long Covid is a new and novel disease in and of itself; that Long Covid’s major driver and area of research is SARS2 persistence; and that ME/CFS and Long Covid are not equal. Dr. Proal conveyed that both diseases (Long Covid and ME/CFS) can be from viral persistence, but that their origins and pathogenic activity are biologically different and should not be conflated.

This is a critical time when the urgency and focus of solving Long Covid through funding and research for repurposed and novel SARS-CoV-2 antivirals is paramount. LCAP is concerned that based on some of the witnesses' testimonies, our disease narrative was once again co-opted by outside organizations prior to the hearing. We feel the Senate HELP Committee remains in the dark on key facts. No esteemed scientists and physicians who share our positions on viral persistence had a voice for any of the proposed legislation and funding requests to date.

LCAP received confirmation from Harvard Economist David Cutler that $28 billion annually should be the starting point from Congress for legislation that addresses Long Covid research and programs. Anything less would likely result in avoidable deaths. Recently the CDC reported Long Covid has suffered over 4600 deaths in the last four years. This is shocking when we look at the first four years of HIV/AIDS deaths in America and find out Long Covid is not far behind.

At the hearing, the “Moonshot” policy and legislation asks in testimonies were published by news outlets as a kind of “cancer moonshot” initiative. What was not published or discussed at the hearing is that this plan, based on Cutler’s estimates, could underfund Long Covid by at least $270 billion over the next ten years, and align itself to legislation from Senator Kaine’s office that excludes specific dollar requests and demands for biomedical research.  

We know doctors are telling patients with Long Covid that lymphocytes subsets panels are not established to be impacted by Long Covid. And yet, we have study after study showing this is happening to people with Long Covid who are now showing signs of immune deficiency, immune dysregulation, immune exhaustion and immune dysfunction.

“Patients are developing AIDS-like immunodeficiency and succumbing to opportunistic infections and cancer. But these stories are not being told. The situation is urgent. We have no treatments and no seat at the table to shift the focus to one that will save lives,” said Linda Roberts, one of the two direct action LCAP protestors.

We have tried to inform HELP 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, the largest Long Covid email campaign to date as reported by OptOut News. Despite these efforts every prior governmental meeting on Long Covid has taken place between legislators and so-called advocacy organizations without LCAP representation.

Since 2020, we have undergone gatekeeping within the federal government and specifically the NIH, wherein RECOVER meetings are held without representation from Long Covid centered organizations like LCAP.

After 4 years of those meetings and hearings, there are zero FDA-approved effective therapeutics. LCAP believes the situation is unacceptable. Senator Roger Marshall summed up the progress of NIH’s work 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.

LCAP demands remain firm: the government must declare Long Covid a national emergency, establish $28 billion in annual funding for Long Covid research and programs, and establish new SARS-CoV-2 specific legislation for research and treatments to begin creating antivirals.

Long Covid is a crisis 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, here are our LCAP demands that were not presented by witnesses to the Senate HELP committee during testimony:

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.

3. Mandate Nationwide Tracking of SARS-CoV-2 in Wastewater at Publicly Owned Treatment Works.

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 including the Following:

   1. Educating healthcare providers as to Long Covid diagnostic criteria and appropriate treatments;

   2. Installing social and financial safety nets for Long Covid victims including a streamlined SSDI hearing process and other support;

   3. Requiring reasonable ADA accommodations particularly in healthcare settings to include masking in hospitals and medical offices;

   4. Creating programs and incentives to clean the air in buildings, particularly in schools.

9. Make 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.

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

LCAP hopes to be given the opportunity to present evidence supporting these demands to the HELP committee as soon as possible. The science and economics behind our demands are sound. LCAP would be honored to have an opportunity to provide evidence supporting this assertion. We respectfully request our voices have an equal chance to be heard.

Sincerely,

LCAP (Long Covid Action Project)