LC5-Mortality and a Moonshot

The pandemic is not “over” for people with Long Covid (LC). We are still concerned about catching a cold. We are the people wearing masks in public and asking our dear ones if they will kindly take a PCR test before we spend time together because the antigen home tests are often falsely negative. We still pay attention to current variant wastewater levels, the number of reported hospitalizations, and to the unmasked people coughing in the grocery store. According to epidemiologists, following reported covid hospitalization numbers isn’t helpful. The stats represent an undercount as hospital reporting is inconsistent. Some states and counties may have better reporting than others, but it’s all a bit fuzzy since May of 2023 when the pandemic was declared “over” by the Department of Health and Human Services. It is not over for millions of us who value life and want to continue living despite the limitations that accompany living with LC.

On Thursday, January 18, 2024 Senator Bernie Sanders chaired a Full Committee Hearing “Addressing Long Covid:  Advancing Research and Improving Patient Care” (watch it here). During the hearing they state that along with the escalating health impact, (and with rising risks from repeated infections), LC is also a drain on the nation’s economy, with 4 million people out of work and $170 billion in lost wages. Panelists included patients and physicians calling for a “Long Covid Moonshot” to request funding for advanced research, better treatment, and patient support for those living with LC. Patient testimony included data points regarding the social inequities of LC, with women and people of color being more affected. Physician panelists expressed both frustration and hope while they addressed various aspects of how the healthcare system has failed the nation, not only regarding covid and post-covid conditions but for other conditions, such as myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS), fibromyalgia, and other invisible illnesses. Yes, I watched the hearing in full. It was emotional to watch. Perhaps I was experiencing a sense of relief that a handful of doctors and senators are ready to acknowledge and address a level of suffering shared by many.

The panel physicians confirmed that healthy people of all ages are being diagnosed with LC (even children). This often occurs without any known underlying medical conditions and without having had severe COVID-19 infection or hospitalization. They stressed that this could happen to anyone following an acute infection. As of this writing there are reports that the JN1 variant is rising fast throughout our country and the world. It is a persistent, dangerous (for some people) virus; still mutating and causing acute infections for millions, and death for about 2,000 people a week in the USA (most over the age of 65). In 2023, acute covid was the fourth leading cause of death. The current estimate of Long Covid patients in the USA is 18 million. In March of 2023, The Lancet estimated that world-wide at least 65 million are struggling with Long Covid.

So, is LC really that serious and scary? Would it kill me to risk catching a cold or to get covid again? Is it possible that LC will cause my death sooner than later? Is this situation chronic, and if so, what does that mean? I pondered these questions deeply in 2023 on days when I felt I might die sooner rather than later. Not a stranger to the topic of mortality, I set out to do some research. According to a 2022 report at the Centers for Disease Control and Prevention, there is “no standardized guidance for listing Long Covid as a cause of death”. They do however note that at least 3,500 death certificates listed LC as the cause of death from the beginning of 2020 to December of 2022. Many researchers believe that since Long Covid is so complex and massively underdiagnosed, misdiagnosed, or not diagnosed at all, establishing its fatality potential is impossible. So far, I’m still here. Not dead yet! I count myself lucky even though my baseline has back-peddled  considerably since 2020.

Next up in the Long Covid series, I’ll share more about chronic conditions.

Please Note:  The Long Covid series is intended to be both a memoir and an educational resource for the “living well” aspect of our mission. It is hoped that the content will increase empathy, support, and understanding for those living with chronic conditions. All site content is for informational purposes only and should not be taken as medical advice. Always consult with medical professionals to address new or persisting health concerns.

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