Dear Mr. President, Vice President, members of Congress, state and federal agencies,

The recent Long Covid Research proposal presented by Senator Sanders from the HELP Committee falls significantly short of addressing the severity of Long Covid. Senator Sanders' suggested legislation for Long Covid that lacks direct focus on viral persistence of SARS-CoV-2, allowing for it to be combined with various conditions under one umbrella, now being sold to Congress as IACC (infection associated chronic conditions). This lack of focus on viral persistence would reduce funding for Long Covid to a nominal amount and mistakenly conflate Long Covid with diseases that are not biomedically the same. Unless SARS-CoV-2 persistence is the focal point for new legislation it will perpetuate a profoundly challenging issue for both current and future people with Long Covid, as well as their families.

All in all, looking at the vast scale of the Long Covid problem, the proposal is inadequate both in funding and concept necessary to tackle the vast scale of financial need for the Long Covid crisis.

Long Covid is not a set of symptoms, but rather a multi-systemic disease that damages organs, neurological, gastrointestinal, and vascular systems, and causes AIDS-like immune dysregulation, with NIH research pointing to SARS-CoV-2 viral persistence as the leading cause.

According to NIH Director Monica Bertagnolli in an interview with Jeremy Faust on MedPage Today, "We see evidence of persistent live virus in humans in various tissue reservoirs, including surrounding nerves, the brain, the GI tract, to the lung. [...] The virus can persist in tissues for months, perhaps even years." With this admission that SARS-CoV-2 is a chronic infection in Long Covid patients, any new proposed legislation must be based on viral persistence, as it would be for HIV/AIDS. Sanders' policy as written lacks phrasing to force research focus on the development of essential viral load tests, as well as antiviral treatments. We need legislation that establishes SARS-CoV-2 transcriptomic viral load tests immediately. Dragging out more Long Covid research at NIH and elsewhere over any length of time without transcriptomic viral load tests will starve patients of diagnostics and treatments.

Taking into account that the quality of life for many people with Long Covid has been measured to be worse than for people with cancer, the proposed legislation largely ignores the importance of social support systems. Compared to cancer or HIV/AIDS patients, Long Covid patients have far fewer social support and treatment options available to them. This is a significant problem that requires government intervention; many healthcare providers even question the legitimacy of Long Covid, leaving patients feeling isolated and lacking medical guidance.

It’s important to keep in mind that Long Covid isn't just a benign chronic disease — it is leading to much graver outcomes. For many of us with Long Covid we can see that time is limited, we are not improving; in fact, a large cohort are experiencing further health declines. Numerous patients are suffering from life-threatening complications from Long Covid, such as immune deficiency, heart disease, and cancer.

According to the Centers for Disease Control and Prevention, Long Covid has claimed the lives of over 5,000 Americans, while COVID-19 has resulted in over 1.1 million deaths in the United States and over 7 million globally. In 2023, Public Herald estimated that over 275 million people worldwide continue to suffer from Long Covid. Data from the United States Census Bureau Household Pulse Survey indicates that about 1 in 4 adults — approximately 27,831,176 Americans — now suffer from Long Covid.  

Sanders’ proposal allocates per-person funding for Long Covid at only between $15-33 per adult patient (nothing for the children here!) per year. If you compare the proposed Long Covid funding with other diseases it illustrates how inadequate this budget proposal is:

* https://pubmed.ncbi.nlm.nih.gov/38222672/

** https://www.hiv.gov/federal-response/funding/budget#:~:text=The%20U.S.%20government%20investment%20in,Congress%20through%20the%20appropriations%20process.

According to Harvard Health Economist David Cutler, an annual budget of $28 billion, comparable to what’s allocated for HIV/AIDS, is a reasonable starting point for new Long Covid legislation. With this in mind, allocating $1 billion per year cannot begin to address the urgent needs of Long Covid patients.

Sanders’ proposal is concerning for even more reasons. The NIH has previously wasted RECOVER funds without any accountability or oversight, and has resulted in no tangible progress. Despite the agency’s insistence that the pandemic is over, Covid infection rates have not declined and Long Covid cases continue to rise. People with Long Covid deserve better.

There are myriad line items left out of Sanders' proposal. Long Covid legislation should:

• Acknowledge that Long Covid is a unique illness driven by viral persistence, in ways similar to HIV/AIDS.

• Provide money and resources to develop and provide a viral load test. We are in the fifth year of the pandemic and still have no definitive diagnostic tool for Long Covid even though the NIH has a SARS-CoV-2 viral load test being used in trials.

• Urgently mandate research and provide funding to repurpose current antiviral medications or other medications as well as fund research for new targeted antivirals.

• Develop and disseminate diagnostic and treatment guidelines to physicians treating Long Covid patients.

• Provide funding and mandates for stringent mitigations against forward transmission of Covid in healthcare settings. Seeking healthcare has become risky for Long Covid patients, many of whom are immune compromised due to Long Covid. As a result, many decline to participate in research trials or clinical treatments due to the high risk of Covid transmission in medical offices and hospitals.

• Allocate funding and establish mandates for implementing measures to mitigate the forward transmission of Covid in schools. Schools are significant sources of Covid transmission, endangering not only the children but their families as well.

• Treatment groups and patient advisory groups must include racially diverse Long Covid patients experiencing serious complications such as lymphocytopenia, immune deficiencies leading to opportunistic infections, cardiovascular issues, heart failure, cancers, strokes, MIS-C, MIS-A and vaccine injury.

• Finally, Long Covid legislation should recognize that there are a cohort of patients who have experienced the adverse effects of Covid vaccines and provide a robust study arm to investigate this condition. Vaccine-injured patients deserve a seat at the table. It’s especially of interest to those with Long Covid who adversely reacted to Covid Vaccination and can no longer take them.

I support a comprehensive approach to Long Covid legislation, one that’s closely modeled after current HIV/AIDS legislation. The following represents names and links to executive summaries for the type of legislation we would like to see enacted which were drafted by the LCAP CURE committee, who refers to them as the “HEAL”, i.e. three Long Covid legislative proposals modeled on bipartisan bills that can effectively tackle viral persistence:

1. VITAL: Vital Innovative Treatments and Antivirals for Long Covid for research into curing, treating, and preventing Long Covid, and;
2. INSPIRE: Initiate Needed Services, Preventions, and Implement Research with Equity for Long Covid Act for social support, care, and treatment of people with Long Covid,
3. IMPACT: International Medical Preventions And Curative Treatments for Long Covid for international activities to address Long Covid.

The HEAL (Help Every Aspect of Long Covid) proposal is closely based on three prior HIV/AIDS bills and consists of two key aspects:

1. The research into finding a cure for Long Covid and protecting the American people, INCLUDING our children; and a bill for international action.

2. The care and the treatment of people who are Long Covid patients, including social support needed to help them to survive in a society where Long Covid patients experience rejection and gaslighting.

The January 2024 HELP committee meeting featured patient representatives from professional organizations. These invitees, however, are not representative nor are their experiences comparable to those faced by severe Long Covid patients. The HELP Committee should therefore reconvene as soon as possible to include testimony from severe patients in the broader Long Covid community. Specifically, Long Covid patients who are too ill to physically travel to Washington, DC, must be accommodated to participate via video links. Participants should also include Long Covid patients who are experiencing serious complications such as lymphocytopenia, immune deficiencies leading to opportunistic infections, cardiovascular issues, heart failure, cancers, strokes, MIS-C, and MIS-A. BIPOC patients experience unique challenges and should also be included.

Before closing, we want to emphasize that diseases associated with chronic infections, vaccine injury, or environmental causes prior to SARS-CoV-2 deserve their own legislation, funding and research priorities. These priorities should be established both within the NIH and as part of international efforts. The exclusion of these critical items over the last forty years has prevented not only potential cures, but has also hindered treatment and led to avoidable deaths within these communities.

Thank you for taking the time to read this letter to consider changes to Long Covid legislation,

For Policymakers interested in working with LCAP on this legislation, please email us at: longcovidactionproject@gmail.com

This letter is sponsored by the following Long Covid groups: LCAP, Long Covid Foundation, LCDC, ILCA