The US Government Has Abandoned Us to Endless COVID. We Can Do Better.

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Despair and Disparity: The Uneven Burdens of COVID-19

This week, Nassau County, New York, passed a mask ban. Those wearing face masks will now face the possibility of up to a year in jail or a $1,000 fine. Angry at the power of anti-genocide protests, lawmakers banned one of the most basic forms of disease protection just as the world is experiencing a record surge in COVID cases. While officials insist that the law will not be used against those masking for medical reasons, disabled activists protesting the move say they were intentionally coughed on during the city council meeting where the bill was passed.

In a world of airborne contagious diseases, everyone has a medical reason for masking. So why doesn’t our public health policy recognize that?

In 2020, at the height of the first wave of the COVID-19 pandemic, then-President Donald Trump was excoriated for saying that “when you test, you create more cases.” This statement was met with outcry by journalists and public health professionals and pundits from all major outlets.

Trump’s statements and policies on COVID were regularly and widely critiqued. In October 2020, CNN launched a tracker of “every time Trump said that the coronavirus pandemic was over, but it wasn’t,” which juxtaposed Trump’s words with the number of new cases in the United States.

Since President Joe Biden took office, many of the same things that Trump was excoriated for have been implemented as policy. In September 2022, Biden suddenly declared the pandemic over at the Detroit Auto Show, and in May 2023, Congress ended the federal emergency. Both moves were unrelated to any data about case numbers, yet no similar media outcry about premature or imaginary declarations has dogged the Biden administration.

Trump’s outrageous argument that if the U.S. collected less data, the picture would be rosier has been made into official policy under the Biden administration: As of May 1, 2024, hospitals are no longer required to report admissions, and most of the other data collection infrastructure on COVID test rates, like local dashboards and easily readable trackers on cases and deaths, has already disappeared.

By mid-July 2024, it was possible for Biden to have an active case of COVID and to claim that he is going home to isolate while simultaneously appearing on video in a group of people unmasked, without major media outlets blinking an eye about this contradiction. At this point in the pandemic, the Centers for Disease Control and Prevention (CDC) website is no longer a go-to place for clear COVID information, but instead muddies the difference between COVID and the common cold in its prevention recommendations. As Caroline Hugh, an epidemiologist who volunteers for the Public Health Collective, told Truthout, it is hard to know what’s going on because the “picture has gotten a lot fuzzier and a lot more complicated.”

As Supports for COVID Sunset, Access Is Obstructed

It is worth stating explicitly that the COVID pandemic is decidedly not over, despite the end of the U.S. federal emergency. The policy and response have changed, without any real relationship to changes in the illness and how it affects people.

Trump’s outrageous argument that if the U.S. collected less data, the picture would be rosier has been made into official policy under the Biden administration.

The basic facts about COVID have not evolved that much: It is a highly contagious airborne disease, tight-fitting masks are effective, regular vaccinations are helpful in avoiding more serious illness, and isolation (some experts insist longer than five days) is warranted to avoid getting other people sick. It can cause death and long-term or permanent disability.

What has changed in the last four years is that it has become harder and harder for people to remain clear on this information and to put these basic guidelines into practice. The information about the risks of COVID and how to avoid them has gone from being mainstream advice to countercultural information that people have to search out. In this information-poor environment, the risks to disabled people, to those who work directly with the public (disproportionately BIPOC people) and anyone else with an increased COVID risk level are dramatically increased.

It is also now much harder to put this information into practice as government and institutional support for COVID safety practices has all but evaporated. Tools that were used earlier in the pandemic like free testing, masks and vaccines, have almost all been phased out, often shifting the financial burden for these to individual patients. The expectation to work while sick has been reimposed. The public has repeatedly been told “we have the tools,” but with tens of millions of people kicked off Medicaid in 2024, Paxlovid — a rapid treatment that reduces the risks of the infection — is difficult to obtain for most people, and expensive for almost everyone. Even the Bridge Access program, which funded COVID vaccinations for those without private insurance to cover them, is sunsetting this fall. “It is absolutely unaffordable to get COVID for the vast majority of working Americans, for people who are not working, who are retired and disabled on SSDI, on a limited income, on SSI. This is a catastrophic cost to be exposed to right now,” Beatrice Adler-Bolton, coauthor of Health Communism and co-host of the podcast “Death Panel,” told Truthout.

One of the ways that misleading information becomes normalized is by making it challenging for people to act on any other information.

“Immunity Debt” and Other Commonly Circulated Myths

With the disappearance of supports and these changes to the mainstream media narrative, it has become harder to feel sure about COVID. The dramatic wind down of data available has been coupled with a major shift in framing from the CDC, which has communicated in ways that fail to counter the U.S. public’s widespread turn toward a mentality that is resonant with Trump’s misleading push for “herd immunity” in 2020.

While the CDC does acknowledge that “reinfection can occur as early as several weeks after a previous infection,” much of its recent messaging on COVID has tended to bolster the widespread public sense that hospitalization and COVID deaths have largely decreased because of immunity from prior infection or vaccinations. (Only 28 percent of adults in the U.S. are up to date on COVID vaccinations.) For example, PEW Research Center cited the CDC in its statement that “The vast majority of Americans have some level of protection from the coronavirus because of vaccination, prior infection or a combination of the two. This has led to a decline in severe illness from the disease.”

Adam Moore, a virologist working towards a Ph.D. at the University of California, Davis, says that while this claim is accurate, the overall framing is “dishonest” because it underemphasizes how quickly natural immunity can wane after a COVID infection. He also argues that this frame underemphasizes how COVID can have serious impacts on a person’s immune system and their ability to fend off any kind of illness.

Fundamentally, it is complicated to assess why fewer people are being hospitalized or dying of COVID despite continued high rates of circulation. The reason is not necessarily solely related to immunity (through exposure or vaccination), especially given the disease’s quick evolution that has resulted from the failure to contain it.

The data collection on who has been hospitalized or even died with an active case of COVID has also become less reliable, as many hospitals no longer report all COVID cases, but instead make a distinction between people hospitalized “with COVID” and people hospitalized “for COVID.” And, undercounting of deaths has been a pattern throughout the pandemic.

Most importantly, experts who spoke to Truthout emphasized that death and acute illness like hospitalization are not the only serious outcomes from an illness. Most of us would like to avoid serious injury, traumatic events and long-term disability that fall outside the purview of the basic and extreme indicator of death. Pandemic indicators and figures that do not tell us how many people are developing or living with long COVID, for example, fall far short of offering a complete picture of the risk of COVID infection.

The push for “herd immunity” to COVID is only one of several common misleading ideas about immunity. Another is immunity debt, the claim that if a person missed getting a cold or respiratory virus in 2021 they were more susceptible to getting sick in 2022. Immunity debt, although popularized in some media outlets, is not a scientifically accepted idea. The immune system is a not a “muscle that needs exercise to get stronger,” explained Moore.

COVID goes against a lot of what people in the United States have been told about viruses and what has come to be common sense. The most common viruses in the U.S. are seasonal, but COVID circulates year-round, more like tropical viruses. Moore highlights that this makes COVID fundamentally different from the flu and, crucially, the vaccination cycle for the flu, where annual vaccination works because it can account for the variants that have evolved in the opposite hemisphere. Since COVID circulates everywhere year-round, annual vaccinations are not enough to keep up on the latest variants. Beatrice Adler-Bolton adds that COVID surges in the United States are not related to seasons but rather to moments of intense travel, like Memorial Day weekend, Labor Day weekend, the holidays in November and December, and Spring Break.

Good Information Is Available — If You Know Where to Look

The people who spoke to Truthout for this story recommended many sources of robust, trustworthy information about COVID. These sources are not invested in making sure the economy continues going as it is, which has been one of the biggest reasons government and mainstream sources misrepresent COVID data. Many also have a commitment to disability and racial justice and are actively organizing for improved public health information and infrastructure.

Recommended resources include Noha Aboelata and Roots Community Health’s “people’s health updates” on YouTube; Ground Truths, the newsletter of Eric Topol; The Sick Times, a weekly newsletter focusing on Long COVID; and Adler-Bolton’s podcast, “Death Panel,” which provides regular deep dives and analysis of COVID policy.

Local mask blocs are another good source of information. These local mutual aid groups provide low-cost or free masks to community members (via bulk purchasing), and they share a lot of locally relevant information about COVID (often on Instagram).

Nationally, groups like the People’s CDC, the Public Health Collective and the Pandemic Mitigation Collaborative are synthesizing technical information and sharing it to a wider community with a disability justice lens. Hugh highlighted the importance of reading and combining a variety of information, rather than relying on a single source.

Repetition Is a Democratic Power

The most powerful part of COVID disinformation is its simple repetition through multiple channels constantly, says Adler-Bolton. But repetition can work both ways. Those pushing for more accurate COVID information that allows everyday people to be in solidarity with one another can also use this power of repetition, but “we have to be relentless.”

Undoing the damage of bad information is difficult, because “breaking the mystification of disinformation” can’t be done by simply changing the information that goes through those same media channels, said Adler-Bolton. Instead, people must work with each other through personal connection. “There is a kind of trust that we can build between each other that goes further than the trust any one person can have with any media project, no matter how good the project is.”

Information that rejects ableism and white supremacy raises the stakes by asking people to reject the comforts they have been promised by racial capitalism. Sharing that information with each other is part of a collective struggle for disability and racial justice.