Despite hearing that Covid-19 presents “unprecedented challenges” from scholars,1See, for example, “COVID-19: Unprecedented Challenges and Chances,” special issue, Harvard Data Science Review (2021); Tamanna Kumari and Vineeta Shukla, “Covid-19: Towards Confronting an Unprecedented Pandemic,” International Journal of Biological Innovations 2, no. 1 (2020): 1–10; Deborah Carr, Kathrin Boerner, and Sara Moorman, “Bereavement in the Time of Coronavirus: Unprecedented Challenges Demand Novel Interventions,” Journal of Aging & Social Policy 32, no. 4–5 (2020): 425–431. the popular press, and our bosses, outbreaks, the subsequent vaccination woes, and overwhelming statistics are not unique to the twenty-first century. There are a number of lessons we can take from past pandemic and epidemic media that will allow us to assess and improve the ways that we inform people about disease outbreaks and enroll people in vaccination and other live-saving measures.
We need vaccines in order to live with Covid-19, now and in the future. Yet, infrastructures of information in the United States have so far failed to adequately address this critical individual and social need. Crises have always been mediated through these infrastructures, and that mediation has an expanded impact on racialized inequality. Failing to understand inequitable inclusion in crisis media and the ability to access pandemic response is a matter of life and death.2I want to acknowledge that there are many in the United States who are all too aware of the reality of the pandemic and its costs, people who are traumatized in the course of their efforts to understand the history, register the losses, and measure the impact. These readers know that this is a matter of life and death and this piece will largely echo what they already know. Too many others, however, have been cavalier in the face of the pandemic and this is written for/to them.
The roll out of the Covid-19 vaccines has been a messy patchwork of state and local efforts with little guidance and support at the federal level. People eligible for vaccination might get their information about availability and the process from their primary-care provider or healthcare system, broadcast media, local newspapers, or internet resources. The dependence on digital media in particular has resulted in dramatic failures and inequities.“Communication about the vaccine and subsequent information dissemination has been haphazard and uneven.”
The federal approach to vaccination under the Trump administration placed responsibility on state and local officials, while providing limited advance information through Operation Warp Speed. As a result, communication about the vaccine and subsequent information dissemination has been haphazard and uneven. To get a sense of what this patchwork looks like, I evaluated the digital and telephone resources available for every state and territory in the United States in mid-January 2021. This included information from and about federal and state agencies, local health organizations and providers, pharmacies, nonprofit organizations, and pop-up community-led efforts.
What I found was that functional websites and other media for sharing information existed in some places but were hard to locate and poorly covered in nonlocal print and broadcast media. A perusal of major national and regional news outlets suggested just a handful of state websites were up and running. The Centers for Disease Control and Prevention (CDC) website, however, had far more comprehensive information, linking directly to state-sponsored web content for each state. At that time, just over half of states and territories had dedicated or newly focused telephone hotlines for Covid-19 vaccine information. The call volume for these has been overwhelming. The Alabama hotline was flooded by 1.1 million calls on its first day, the Colorado hotline has been fielding 4,500 calls per day with a staff of 50, and the New Jersey hotline was inundated with 17,000 calls within its first hour of operation.
Websites did not fare much better in terms of providing quick and relatively easy access to vaccine appointments. Glitchy systems and demands for detailed information at the time of registration have been widely reported. As John Keegan and Colin Lecher report, many state websites perform poorly in terms of accessibility and privacy standards. In January, a month after the first vaccines were approved for emergency usage and a year after the first US cases were announced, only half of US states and territories had launched websites where one could sign up for vaccine appointments or find links to vaccine provider appointment sites.“Even where local groups and agencies were able to get digital tools launched on short notice and with little or no federal support, life-saving resources remain hidden within poorly designed and maintained tools.”
Even where local groups and agencies were able to get digital tools launched on short notice and with little or no federal support, life-saving resources remain hidden within poorly designed and maintained tools. An appointment in New York, a state with reasonably functional digital infrastructure, required a time-stealing 12 clicks. Other states’ sites are much worse: Alabama’s “dashboard” uses hard to navigate graphics and the New Jersey site was simply down (it has since been restored). Several state portals only point to VaccineFinder.org, a nonprofit resource that had no Covid vaccine information in January and, by March, had information from just seven states, some of which is partial. Organizations and citizen groups have tried to fill in the gaps; National Public Radio, for example, created a tool that aggregates information from the CDC, local health departments, and news outlets.
Acknowledging that a patchwork of proprietary and local governmental sites has led to massive confusion, President Biden announced on March 11 that a new national vaccine-finder website will be launched in May—six months after vaccines were first approved. Digital media are characteristically more distributed, plural, and labor and infrastructure intensive than older media and the Trump administration left resource-strapped local offices and organizations poorly equipped to address a historic need. No wonder President Biden used a January speech to describe the roll-out at that point as a “dismal failure.”
Of equal or perhaps greater concern, especially given the stress phone systems are under, is that all of these web resources require reliable internet access. Nationally, vaccine priority has been given to the elderly, who are more likely to die from Covid-related illnesses. According to research by the Pew Center, 75 percent of the 65+ demographic in the United States uses the internet and only 64 percent have home broadband access. While broadband is not an absolute requirement for accessing the internet, vaccination sites are often image heavy and running bandwidth-hungry tools like interactive maps. Consequently, a third of all people 65 and older are unable to reliably access vaccination appointments online. Finally, studies have found that older adults are less comfortable with accessing health resources like appointment portals online, with only 50 percent of older adults using existing patient portals before the pandemic.3National Poll on Healthy Aging, “Logging in: Using Patient Portals to Access Health Information,” June 2018. Simply put, the population at greatest risk of death from Covid is the least equipped to be able to access vaccine appointments online.“The system created to obtain vaccinations further disadvantages the very same people who are disproportionally impacted by Covid-19 in the United States—the elderly and Black, Brown, and Indigenous Americans.”
Lack of reliable and robust internet service is not just an age-related barrier to information and vaccine access; many Black, Brown, and Indigenous people similarly do not have adequate internet connection. In the United States, 15 percent of Black and 14 percent of Hispanic people have no internet access at all and more than a third of both populations do not have home broadband. Digital access is limited for Indigenous people in the United States as well, especially for those who live on reservations. One in 5 reservation residents lacks internet and roughly 431,000 housing units, a quarter of all housing on all tribal lands, don’t even have the option to get the lowest-speed internet connected at home.4Consumer & Governmental Affairs Bureau, Wireless Telecommunications Bureau, and Wireline Competition Bureau, Report on Broadband Deployment in Indian Country, Pursuant to the Repack Airwaves Yielding Better Access for Users of Modern Services Act of 2018 (Federal Communications Commission, May 2019). This is in the context of Covid-19 mortality rates for Black Americans that are more than twice that of White Americans, as well as Latinx and Native Americans facing similarly high mortality rates.5Note that racial data is not being systematically reported by all states, so it’s possible that the numbers in these studies are actually undercounts of the health differential between white and non-white COVID patients. See Andrew Stokes et al., “Assessing the Impact of the Covid-19 Pandemic on US Mortality: A County-Level Analysis,” preprint, submitted August 31, 2020, and Daniel M. Weinberger et al., “Estimation of Excess Deaths Associated With the COVID-19 Pandemic in the United States, March to May 2020,” JAMA Internal Medicine 180, no. 10 (2020): 1336–1344. Also, see Don Bambino Geno Tai et al., “The Disproportionate Impact of COVID-19 on Racial and Ethnic Minorities in the United States,” Clinical Infectious Diseases 72, no. 4 (2021): 703–706. For more on the history of such disparate impacts, see also J. Nadine Gracia, “COVID-19’s Disproportionate Impact on Communities of Color Spotlights the Nation’s Systemic Inequities,” Journal of Public Health Management and Practice 26, no. 6 (2020): 518–521. Overall, the system created to obtain vaccinations further disadvantages the very same people who are disproportionally impacted by Covid-19 in the United States—the elderly and Black, Brown, and Indigenous Americans.
While this situation is novel in so far as internet-based media are late twentieth-century innovations, the United States has a long history of failing to meet the moment when it comes to epidemic outbreaks. When the US government approved the use of the Salk vaccine in the fight against polio in 1955, it had failed to secure doses in advance (unlike Canada) and there were nationwide shortages for more than a year.6→Dwight D. Eisenhower, “Statement by the President on the Polio Vaccine Situation,” (press release, Washington, DC, May 31, 1955), The American Presidency Project, UC Santa Barbara.
→Ovetta Culp Hobby, “Remarks at Conference on Salk Vaccine,” (April 22, 1955), Dwight D. Eisenhower Presidential Library, Museum, and Boyhood Home. Initially, the nonprofit National Foundation for Infantile Paralysis (later known as the March of Dimes Foundation) was the best source of information on the vaccine priority list and for access to the vaccine itself. Rather than coordinate a federal response, the US government purchased doses on behalf of states and left it to state and local groups to handle communication and distribution, resulting in myriad inequities, including the exclusion of Black populations from inoculation through Whites-only institutions.7Naomi Rogers, “Race and the Politics of Polio: Warm Springs, Tuskegee, and the March of Dimes,” American Journal of Public Health 97, no. 5 (2007): 784–795. Vaccine cost and access to transportation to vaccine sites also created economic and racial inequities that look familiar in today’s context.
As everyone scrambles to address faulty web systems and build new ones, we are left with following urgent considerations: How do we address the fact that as much as a third of the most vulnerable populations in the United States are not able to access digitally served information, let alone register for online appointments? If we consider vaccine websites as one of the many ways that our lives are mediated by online content and process, that they are literally vital in the sense of “indispensable to human life” today, then how do we understand the lack of reliable digital access? Our media are part of our vital processes, and we need to recognize that not being able to access certain media has deadly consequences.
Mortality tracking is the oldest form of population health monitoring and resources for preventative care often flows toward the communities that government has invested in monitoring. As a consequence, and despite the reductive nature of mortality counts, not being accounted for in our various media can be deadly. As with the vaccine rollout, reporting on testing and mortality in the United States and abroad has relied on digital infrastructures poorly equipped to handle massive, near real-time information flows. Counting our dead is as much a vital process of mediation as is providing access to life-saving care.“As has been the case in past pandemics, Covid‐19 can be listed as an underlying condition to an immediate cause of death such as pneumonia or acute respiratory distress syndrome.”
Counting and reporting deaths always takes time. Even under normal circumstances different states have divergent reporting timelines, varying from 24 hours to 10 days to provide data to the federal government. The process has several stages: When someone dies the immediate cause of death, along with up to three underlying conditions that “initiated the events resulting in death,” is recorded on a death certificate by a medical professional. As has been the case in past pandemics, Covid‐19 can be listed as an underlying condition to an immediate cause of death such as pneumonia or acute respiratory distress syndrome. As we saw in 2019, this process itself has led some to suggest that there is an intentional overcount of Covid deaths.8Daryl Austin, “Viral Claim that Only 6% of COVID-19 Deaths Were Caused by the Virus is Flat-Out Wrong,” Live Science, September 2, 2020. Once the death certificate has been completed, it is then filed with the local health department, which then reports them to the National Center for Health Statistics (NCHS). As part of the National Vital Statistics System, the NCHS uses this information to tabulate mortality statistics for each state and for the entire country. Once aggregated, the data is made publicly available on the CDC website.
Currently, many states are weeks or months behind in reporting because they are overwhelmed by the volume of deaths. Our current Covid-19 dashboards do little to make this reality visible to users beyond small footnotes or discussions in the “about” section of a site. Instead, we have visualizations that look like they are giving near real-time information, mediations that give us a sense of our collective well-being that is neither accountable to time nor the all too mortal bodies lining morgues, refrigerator trucks, and crematoria.
Covid‐19 is now the leading cause of death in the United States as measured by the number of daily deaths.9Steven H. Woolf, Derek A. Chapman, and Jong Hyung Lee, “COVID-19 as the Leading Cause of Death in the United States,” JAMA 325, no. 2 (2020): 123–124. On February 4 alone there were a stunning 5,227 reported Covid-19 deaths. That is roughly as many people as the entire undergraduate student body of Columbia University or the population of Moab, Utah. One day’s losses were equivalent to the passenger capacity for two of the largest ocean liners or as many people as it would take to sell out three of Broadway’s largest venues. In an era when refrigerated trucks are supplementing morgue capacity, it would take 53 of the largest refrigerated trucks filled to capacity to hold our peak daily death count. Covid-19 is currently the third leading cause of deaths when measured on an annual basis, behind heart disease and cancer.10A number of media outlets and scholars have tried to help visualize the scale of loss due to Covid-19 in the United States. For example, John Drake, “Visualizing Covid-19 Deaths in the United States,” Forbes, November 20, 2020; Eve Conant, Kelsey Nowakowski, and Oscar A. Santamariña with Joe McKendry, “What 500,000 Covid Deaths Looks Like,” National Geographic, n.d.; Artur Galocha and Bonnie Berkowitz, “500,000 Dead, A Number Almost Too Large to Grasp,” Washington Post, February 21, 2021; and Cassidy Chansirik, “Visualizing Covid-19 Deaths as if They All Happened in Your Neighborhood,” September 28, 2020. These numbers are vital, both in terms of helping us understand Covid and its infection profile and in terms of mobilizing resources for communities. They are also not enough.
As Andrew Stokes and his colleagues have found, the undercount of official Covid-19 deaths is more significant for both Black and Hispanic populations.11Stokes et al., “Assessing the Impact of the Covid-19 Pandemic.” As with the inequities of the vaccine roll out, history demonstrates that our struggles with equitable mortality counting and, hence, disease response are not new. We now know that Black Americans had a higher case fatality rate than their White counterparts during the 1918 influenza pandemic.12Helene Økland and Svenn-Erik Mamelund, “Race and 1918 Influenza Pandemic in the United States: A Review of the Literature,” International Journal of Environmental Research and Public Health 16, no. 14 (2019): 2487. Additionally, the undercount of Native American deaths, which happened at four times the rate of White Americans, has obscured how state and federal governments abandoned tribal communities during that global pandemic.13Benjamin R. Brady and Howard M. Bahr, “The Influenza Epidemic of 1918–1920 among the Navajos: Marginality, Mortality, and the Implications of Some Neglected Eyewitness Accounts,” American Indian Quarterly 38, no. 4 (2014): 459–491. We can see the historical disparities at the local level as well, as in the case of late nineteenth and early twentieth-century Los Angeles, where the racialization of public health monitoring and responses led to a greater disease and mortality burden among Asian American and Hispanic populations.14Oakland, CA: University of California Press, 2006More Info →
Lower socioeconomic status and rural locations correlate to a more significant disparity between confirmed Covid-19 deaths and excess deaths.15Stokes et al., “Assessing the Impact of the Covid-19 Pandemic.” Whether this means that more rural poor Americans are dying at home with undiagnosed Covid or that they are not seeking medical care for other conditions is difficult to tell, although the comparison against official annual data suggests that many may be falling victim to Covid without being counted. We know from the examples of the 1918 influenza pandemic and twentieth-century smallpox and polio epidemics that these undercounts often obscure the suffering and abandonment of non-White populations and leave yawning gaps in our national mourning and storytelling—phenomena that are critical to healing trauma and helping to develop more equitable responses in future pandemics.“Flawed as they are, mortality counts have been a kind of constant companion, at times a kind of national anti-heartbeat as the rate of infection and then mortality began to be counted in terms of numbers per minute.”
Flawed as they are, mortality counts have been a kind of constant companion, at times a kind of national anti-heartbeat as the rate of infection and then mortality began to be counted in terms of numbers per minute. Some of our best tracking efforts are coming to a close, ending far later than any of us expected when they began as volunteer pop-up efforts.16Erin Kissane and Alexis Madrigal, “It’s Time: The COVID Tracking Project Will Soon Come to an End,” The COVID Tracking Project at The Atlantic, February 1, 2021. Others have transitioned from volunteer work to supported full-time jobs, still filling gaps created by a hobbled and under-resourced CDC and a confusing network of dispersed local and state agencies that are similarly stretched thin.
Here in the United States, we are in a strange liminal moment with respect to Covid-19. Most of us have lived with a full year of mandated restrictions on our daily lives and we’ve consumed massive volumes of information about the disease and public responses to it. In many ways, many of us may feel that we know Covid all too well. Vaccines are here, but our ability to locate and receive them is spotty at best and, for the majority of us, they are still a future that we look forward to—both in terms of the media that will allow us to readily locate them and our ability to actually receive vaccination.
The current morass of media information and digital infrastructure is a reminder that while these are vital tools, they are not and never have been equitable.17I am drawing on Sarah Kember and Joanna Zylinska’s theorization of “vital media” in their Life after New Media: Mediation as a Vital Process (Cambridge, MA: The MIT Press, 2014). As we move into this next phase of living with Covid-19 in the United States, we need to pay far greater attention to the limits and powers of our digital media, intentionally grappling with what it means for digital media to be “indispensable to human life” and as capable of inflicting “mortal” wounds. Failure to do so is a matter of life and death, now and in the future.
→Ovetta Culp Hobby, “Remarks at Conference on Salk Vaccine,” (April 22, 1955), Dwight D. Eisenhower Presidential Library, Museum, and Boyhood Home.