While many people in the U.S. have abandoned COVID-19 mitigations like vaccines and masking, the virus remains dangerous for everyone, and some groups face higher risks than others. Immunocompromised people—whose immune systems don’t work as well as they should due to health conditions or medications—are more vulnerable to infection and severe symptoms from the virus. 

Public Good News spoke with three immunocompromised people about the steps they take to protect themselves and what they want others to know about caring for each other.

[Editor’s note: The contents of these interviews have been condensed for length.]

PGN: What measures have you been taking to protect yourself since the COVID-19 pandemic began?

Tatum Spears, Virginia

From less than a year old, I had serious, chronic infections and have missed huge chunks of my life. In 2020, I quit my public job, and I have not worked publicly since. 

I have a degree in vocal performance and have been singing my whole life, but I haven’t performed publicly since 2019. I feel like a bird without wings. I had to stop traveling. Since no one wears a mask anymore, I can’t go to the movies or social outings or any party.

All my friends live in my phone now. It’s a community of people—a lot of them are immunocompromised or disabled in some way. 

There are a good portion of them who just take COVID-19 seriously and want to protect their health, who feel the existential abandonment and the burden of all of this. It’s really isolating having to step back from any sort of social life. I have to assess my risk every single time I leave the house.

Gwendolyn Alyse Bishop, Washington 

I was hit by a car when I was very young. I woke up from surgery, and doctors told me I had lost almost all of my spleen. So, I was always the sickest kid in my school.

When COVID-19 hit, I started working from home. At first, I wore cloth masks. I didn’t really learn about KN95 masks until right around the time that COVID-19 disabled me. [Editor’s note: N95 and KN95 masks have been shown to be significantly more effective at preventing the transmission of viral particles than cloth masks.]

I actually don’t get out much anymore because I am disabled by long COVID now, but when I do leave, I wear a respirator in all shared air spaces. My roommate and I have HEPA filters going in every room.

And then we test. I have a Pluslife testing dock, and so we keep a weekly testing schedule with that and then test if there are any symptoms. I got reinfected [with COVID-19] last winter, and a Pluslife test helped me catch it early and get Paxlovid. [Editor’s note: Pluslife is a brand of an at-home COVID-19 nucleic acid amplification test, which has been shown to be significantly more effective at detecting COVID-19 than at-home antigen rapid tests.]

Abby Mahler, California

I have lupus, and in 2016, I started taking the drug hydroxychloroquine, which is an immunomodulator. I’m not as immunocompromised as some people, but I certainly don’t have a normal immune system, which has resulted in long-term infections like C. diff.

I started masking early. My roommates and I prioritize going outside. We don’t remove our masks inside in public places. 

We are in a pod with one other household, and the pod has agreements on the way that we interact with public space. So, we will only unmask with people who have tested ahead of time. We use Metrix, an at-home nucleic acid amplification test.

While it’s not easy and it’s not the life that we had prior to COVID-19’s existence, it is a life that has provided us quite a lot of freedom, in the sense that we are not sick all the time. We are conscientiously making decisions that allow us to have a nice time without a monkey on our backs, which is freeing.

PGN: What do you want people who are not immunocompromised to know?

T.S.: Don’t be afraid to be the only person in a room wearing a mask. Your own health is worth it. And you have to realize how callous [people who don’t wear a mask are] by existing in spaces and breathing [their] air [on immunocompromised people].

People think that vaccines are magic, but vaccines alone are not enough. I would encourage people to look at the Swiss cheese model of risk assessment. 

Each slice of Swiss cheese has holes in it in different places, and each layer represents a layer of virus mitigation. One layer is vaccines. Another layer is masks. Then there’s staying home when you’re sick and testing.

G.A.B.: I wish people were masking. I wish people understood how likely it is that they are also now immunocompromised and vulnerable because of the widespread immune dysregulation that COVID-19 is causing. [Editor’s note: Research shows that COVID-19 infections may cause long-term harm to the immune system in some people.]

I want people to be invested in being good community members, and part of that is understanding that COVID-19 hits the poorest the hardest—gig workers, underpaid employees, frontline service workers, people who were already disabled or immunocompromised. 

If people want to be good community members, they not only need to protect immunocompromised and disabled people by wearing a mask when they leave their homes, but they also need to actually start taking care of their community members and participating in mutual aid. [Editor’s note: Mutual aid is the exchange of resources and services within a community, such as people sharing extra N95 masks.]

I spend pretty much all of my time working on LongCOVIDAidBot, which promotes mutual aid for people who have been harmed by COVID-19.

A.M.: An important thing to think about when you’re not disabled is that it becomes a state of being for all people, if they’re lucky. You will become disabled, or you will die. 

It is a privilege, in my opinion, to become disabled because I can learn different ways of living my life. And being able to see yourself as a body that changes over time, I hope, opens up a way of looking at your body as the porous reality that it is. 

Some people think of themselves as being willing to make concessions or change their behavior when immunocompromised people are around, but you don’t always know when someone is immunocompromised. 

So, if you’re not willing to change the way that you think about yourself as a person who is susceptible [to illness], then you should change the way that you consider other people around you. Wearing a mask—at the very least in public indoor spaces—means considering the unknown realities of all the people who are interacting with that space.

This article first appeared on Public Good News and is republished here under a Creative Commons license.

The anti-vaccine movement is nearly as old as vaccines themselves. For as long as humans have sought to harness our immune system’s incredible ability to recognize and fight infectious invaders, critics and conspiracy theorists have opposed these efforts. 

Anti-vaccine tactics have advanced since the early days of protesting “unnatural” smallpox inoculation, and the rampant abuse of scientific data may be the most effective strategy yet. 

Here’s how vaccine opponents misuse data to deceive people, plus how you can avoid being manipulated.

Misappropriating raw and unverified safety data

Perhaps the oldest and most well-established anti-vaccine tactic is the abuse of data from the federal Vaccine Adverse Event Reporting System, or VAERS. The Centers for Disease Control and Prevention and the Food and Drug Administration maintain VAERS as a tool for researchers to detect early warning signs of potential vaccine side effects. 

Anyone can submit a VAERS report about any symptom experienced at any point after vaccination. That does not mean that these symptoms are vaccine side effects.

VAERS was not designed to determine if a specific vaccine caused a specific adverse event. But for decades, vaccine opponents have misinterpreted, misrepresented, and manipulated VAERS data to convince people that vaccines are dangerous. 

Anyone relying on VAERS to draw conclusions about vaccine safety is probably trying to trick you. It isn’t possible to determine from VAERS data alone if a vaccine caused a specific health condition.

VAERS isn’t the only federal data that vaccine opponents abuse. Originally created for COVID-19 vaccines, V-safe is a vaccine safety monitoring system that allows users to report—via text message surveys—how they feel and any health issues they experience up to a year after vaccination. Anti-vaccine groups have misrepresented data in the system, which tracks all health experiences, whether or not they are vaccine-related.

The U.S. Department of Defense’s Defense Medical Epidemiology Database (DMED) has also become a target of anti-vaccine misinformation. Vaccine opponents have falsely claimed that DMED data reveals massive spikes in strokes, heart attacks, HIV, cancer, and blood clots among military service members since the COVID-19 vaccine rollout. The spike was due to an updated policy that corrected underreporting in the previous years

Misrepresenting legitimate studies

A common tactic vaccine opponents use is misrepresenting data from legitimate sources such as national health databases and peer-reviewed studies. For example, COVID-19 vaccines have repeatedly been blamed for rising cancer and heart attack rates, based on data that predates the pandemic by decades. 

A prime example of this strategy is a preliminary FDA study that detected a slight increase in stroke risk in older adults after a high-dose flu vaccine alone or in combination with the bivalent COVID-19 vaccine. The study found no “increased risk of stroke following administration of the COVID-19 bivalent vaccines.”

Yet vaccine opponents used the study to falsely claim that COVID-19 vaccines were uniquely harmful, despite the data indicating that the increased risk was almost certainly driven by the high-dose flu vaccine. The final peer-reviewed study confirmed that there was no elevated stroke risk following COVID-19 vaccination. But the false narrative that COVID-19 vaccines cause strokes persists.

Similarly, the largest COVID-19 vaccine safety study to date confirmed the extreme rarity of a few previously identified risks. For weeks, vaccine opponents overstated these rare risks and falsely claimed that the study proves that COVID-19 vaccines are unsafe. 

Citing preprint and retracted studies

When a study has been retracted, it is no longer considered a credible source. A study’s retraction doesn’t deter vaccine opponents from promoting it—it may even be an incentive because retracted papers can be held up as examples of the medical establishment censoring so-called “truthtellers.” For example, anti-vaccine groups still herald Andrew Wakefield nearly 15 years after his study falsely linking the measles, mumps, and rubella (MMR) vaccine to autism was retracted for data fraud. 

The COVID-19 pandemic brought the lasting impact of retracted studies into sharp focus. The rush to understand a novel disease that was infecting millions brought a wave of scientific publications, some more legitimate than others. 

Over time, the weaker studies were reassessed and retracted, but their damage lingers. A 2023 study found that retracted and withdrawn COVID-19 studies were cited significantly more frequently than valid published COVID-19 studies in the same journals. 

In one example, a widely cited abstract that found that ivermectin—an antiparasitic drug proven to not treat COVID-19—dramatically reduced mortality in COVID-19 patients exemplifies this phenomenon. The abstract, which was never peer reviewed, was retracted at the request of its authors, who felt the study’s evidence was weak and was being misrepresented. 

Despite this, the study—along with the many other retracted ivermectin studies—remains a touchstone for proponents of the drug that has shown no effectiveness against COVID-19.

In a more recent example, a group of COVID-19 vaccine opponents uploaded a paper to The Lancet’s preprint server, a repository for papers that have not yet been peer reviewed or published by the prestigious journal. The paper claimed to have analyzed 325 deaths after COVID-19 vaccination, finding COVID-19 vaccines were linked to 74 percent of the deaths. 

The paper was promptly removed because its conclusions were unsupported, leading vaccine opponents to cry censorship. 

Applying animal research to humans

Animals are vital to medical research, allowing scientists to better understand diseases that affect humans and develop and screen potential treatments before they are tested in humans. Animal research is a starting point that should never be generalized to humans, but vaccine opponents do just that.

Several animal studies are frequently cited to support the claim that mRNA COVID-19 vaccines are dangerous during pregnancy. These studies found that pregnant rats had adverse reactions to the COVID-19 vaccines. The results are unsurprising given that they were injected with doses equal to or many times larger than the dose given to humans rather than a dose that is proportional to the animal’s size. 

Similarly, a German study on rat heart cells found abnormalities after exposure to mRNA COVID-19 vaccines. Vaccine opponents falsely insinuated that this study proves COVID-19 vaccines cause heart damage in humans and was so universally misrepresented that the study’s author felt compelled to dispute the claims. 

The author noted that the study used vaccine doses significantly higher than those administered to humans and was conducted in cultured rat cells, a dramatically different environment than a functioning human heart. 

How to avoid being misled

The internet has empowered vaccine opponents to spread false information with an efficiency and expediency that was previously impossible. Anti-vaccine narratives have advanced rapidly due to the rampant exploitation of valid sources and the promotion of unvetted, non-credible sources. 

You can avoid being tricked by using multiple trusted sources to verify claims that you encounter online. Some examples of credible sources are reputable public health entities like the CDC and World Health Organization, personal health care providers, and peer-reviewed research from experts in fields relevant to COVID-19 and the pandemic. 

Read more about anti-vaccine tactics:

• How vaccine opponents spread misinformation
• How misinformation tricks our brains
• How vaccine opponents use kids to spread misinformation 

This article first appeared on Public Good News and is republished here under a Creative Commons license.