Science, Not Symptoms

Dear NIH,

As a person living with Long Covid or an ally, I find it necessary to emphasize to those at NIH studying, treating, or communicating about Long Covid that Long Covid is not a set of symptoms; it is a multi-systemic disease of SARS-CoV-2 viral persistence that causes organ, neurological, gastrointestinal, and vascular damage as well as AIDS-like immune dysregulation.

Researchers and advocacy organizations representing different diseases who work with NIH have relied on symptom conflation rather than science about SARS-CoV-2 viral persistence and immune changes to define Long Covid. The failure to draw parallels to viral persistence diseases, such as HIV-AIDS, has resulted in misinformation to NIH and Congress and in the mischaracterization of Long Covid as a Infection Associated Chronic Condition (IACC). A symptom-based approach has impeded the development of targeted solutions for Long Covid.  

This letter serves as a declaration of demands for six critical issues NIH RECOVER must address throughout their Long Covid programs to save lives. All six issues must include respirator mandates for any Long Covid work within or funded by NIH RECOVER involving contact with patients, and clean air mitigation measures. SARS-CoV-2 reinfections are not only life-threatening for people with Long Covid, but they also threaten to jeopardize the integrity of study results.

1. Long Covid AIDS

I demand that the immune deficiency, dysfunction, and opportunistic infections caused by SARS-CoV-2 be researched and defined. SARS-CoV-2 is triggering the development of a new form of AIDS, referred to by the World Health Network as CoV-AIDS*, which is a progression of Long Covid that involves lymphocytopenia and AIDS-defining illnesses**.

2. Long Covid Kids

I demand that the NIH focus attention on understanding, developing, and treating Long Covid in children. For much of the pandemic, public health officials have denied the susceptibility of children to Long Covid, and the prevalence and effect of Long Covid on children, such as MIS-C or Type 1 diabetes, is still being minimized to the public and in medical practice. The current approach is robbing children of their futures by dooming them to chronic illness and shortened lifespans. Children deserve to be prioritized.

3. Viral Load Test Now

I demand that the NIH incorporate a SARS-CoV-2 RNA viral load test with at least 90% sensitivity and specificity into all clinical trials going forward. The transcriptomics*** RNA viral load blood test is one example NIH has access to and can provide to people with Long Covid. A strictly symptom based approach to evaluating treatments can fail to identify those that effectively reduce viral load, as symptoms are often exacerbated in the early stages of treatment.  

4. Biomarkers Now

Long Covid needs diagnostic biomarkers tests that are specific to the condition, ones that cannot be confused with other diseases. Long Covid is caused by SARS-CoV-2. While other disease processes may be seen in Long Covid, those biomarkers that detect the virus or viral activity and immune changes need to be given priority.

5. Blood Test Now

People with HIV have easily accessible blood tests to determine their infection status and viral load. People with Long Covid deserve the same access for diagnosis and therapy evaluation. These tests can be performed at a basic laboratory, with a simple minimally invasive blood draw.

6. Antivirals Now

I demand that the NIH shift the focus of clinical trials to novel and repurposed antivirals, monoclonal antibodies, and immunotherapies. Building on the experience from HIV-AIDs, we also demand that Long Covid trials focus on combination therapies and eliminate the monotherapy approach used by NIH to date.

In addition to the demands above, I urge the NIH to support the HEAL legislation drafted by LCAP to provide social support, racial and gender health equity in research, access to clinical trials, preventative measures, educational campaigns, and social services for Long Covid patients.

In closing, I want to stress that people within the Long Covid community are developing AIDS-defining illnesses and are forced to experiment on treatments without an RNA viral load blood test. I’m asking the NIH to act now, and to explain how you will address the six issues outlined in this letter.

Thank you for your time and consideration,

Links to References

* https://whn.global/public-service-announcement/

** https://www.thelancet.com/journals/lanmic/article/PIIS2666-5247(24)00055-7/fulltext

*** https://www.thelancet.com/journals/lanmic/article/PIIS2666-5247(24)00055-7/fulltext