As doctors and paramedics who treat the victims of the Covid-19 pandemic, we have seen firsthand the devastating impact of this disease on our patients, their families, and our communities. The cause of the disease, the SARS-CoV-2 virus, is often called a novel coronavirus, but there is nothing new or novel about what actually kills most Covid-19 patients: sepsis.
Sepsis is the body’s uncontrolled response to an infection: pneumonia, a urinary tract infection, or even a cut or abrasion that becomes infected.
It has been a scourge for generations. Each year, it affects more than 1.7 million Americans and is responsible for more than 270,000 deaths; globally it kills as many as 6 million people a year. Long before the Covid-19 pandemic emerged, in the U.S. sepsis was responsible for 1 of 3 hospital-based deaths. That’s an epidemic hiding in plain sight. Those who recover from sepsis face long recovery processes.
Most people who contract SARS-CoV-2 have minimal, if any, symptoms while others fall critically ill and require hospitalization. Some can be managed with supportive care. For others, though, the body’s response to fight off the infection goes haywire, causing the immune system to attack the body’s own tissues and leading to what is known as a cytokine storm. That storm, which is one of the manifestations of sepsis, can be deadly.
Surviving sepsis often requires radical treatments such as amputation or removal of affected tissue, and almost always leaves a patient’s immune system compromised. Almost 60% of sepsis survivors experience worsened mental and/or physical function. For most patients this is temporary, resolving in a matter of weeks to months, but some experience permanent deficits.
Additionally, based on a recent analysis of Medicare beneficiaries who survived sepsis, older survivors of Covid-19-related sepsis will face a 60% risk of dying from a variety of causes in the three years following hospital discharge.
Sepsis is an epidemic hiding in plain sight. Physicians see it, look past it, and accept it as a part of illness. Meanwhile, sepsis maims and kills hundreds of thousands of Americans every year. This has been a norm for far too long. Now is the time to take long-overdue steps to improve our ability to manage the epidemic of sepsis.
The first step is to gather and analyze reliable and consistent data on who gets sepsis, what treatments work, and how best to support survivors and their families. Incredibly, no such infrastructure exists for reporting this kind of sepsis-related information.
The Covid-19 pandemic is showing us that we can’t manage what we don’t measure. To fight sepsis, its aftermath, and future cases of it — however they are acquired — we need a national sepsis registry to track this condition no matter what infection causes it including, but not limited to, Covid-19 patients and survivors.
A national sepsis registry would build on the existing systems that already capture the information we need: electronic medical record systems, state reporting programs, and forms that are already in use by clinicians. More work will be needed, of course, to integrate the data and build systems to track the diagnosis and treatment of the 1.7 million sepsis patients each year, including better information on their recovery process, which can last months and years.
A national sepsis registry is necessary for a robust public health surveillance system, but its value goes far beyond that. It is also a critical tool to help clinicians do a better job of diagnosing sepsis and improving care for patients, survivors, and their families.
By creating a consistent reporting and research platform across states, a national sepsis registry will allow clinicians and researchers to rapidly detect and treat sepsis related to Covid-19 or any other infection. It will also help health care professionals understand how to detect early warning signs and prevent the progression to sepsis and its myriad complications, including shock, death, amputation, post-sepsis syndrome, and months of painful and expensive recovery.
The creation of this kind of registry is not without precedent. In 1971, President Nixon declared “the War on Cancer.” Leveraging the success of individual hospitals and states in collecting data on cancer screening, diagnosis, and treatment, Congress passed the U.S. National Cancer Act, which budgeted money for the National Cancer Institute (NCI) to accomplish these things on a national scale. In 1973, the NCI established the first national cancer registry, its Surveillance, Epidemiology and End Results Program, so information could be gathered and shared among clinicians at the forefront of treatment.
Ready availability of this information led to incredible advances in cancer care. Today, 90% of female breast cancer patients survive five years or more after being diagnosed with the disease, compared with 75% in 1975. We now have the capability to perform genomic analysis on cancer cells and determine the most effective treatment individualized to the patient, minimizing unnecessary side effects.
A sepsis registry will provide the backbone to likewise understand the genetic basis of individuals whose infections lead to sepsis compared to those whose infections don’t, representing the beginning of precision, personalized treatment for sepsis.
This is why as we continue to work in our ICUs, emergency departments, and ambulances, grateful for all the uplifting expressions of appreciation, we also call for the creation of a national sepsis registry so, for this pandemic and the next and for the years in between, we can learn who gets sepsis and why, what treatments work, and how we can support all of the survivors of sepsis — including, but not limited, to Covid-19’s sepsis survivors.
Steven Q. Simpson is a pulmonary and critical care physician at the University of Kansas and a member of the board of directors and medical director of the Sepsis Alliance. Karin H. Molander is an emergency medical physician at Mills Peninsula Emergency Medicine Associates in Burlingame, Calif., and chair of the Sepsis Alliance board of directors. Rommie Duckworth is director for the New England Center for Rescue and Emergency Medicine and captain and EMS coordinator of the Ridgefield Fire Department in Ridgefield, Mass. The nonprofit Sepsis Alliance is funded by individual and corporate donors, including some pharmaceutical companies. The views expressed here are those of the authors and not necessarily their respective organizations.