Collateral damage

Brianne Dressen rested her sore arm on the car door and closed her eyes. It was Nov. 4, 2020, and she’d just ­gotten her first dose of a COVID-19 vaccine. She and her husband had been running errands that afternoon. They stopped for her appointment, and he was driving her home. They hadn’t gotten very far when Dressen noticed a painful tingling sensation in her arm.

“Something doesn’t feel right,” she said.

Not long after they got home, Dressen knew something was definitely wrong. Her vision began to blur and her hearing was off, as if she had big seashells covering her ears. After putting her children to bed, she tried to distract herself by watching television. But the single screen morphed into two screens stacked on top of each other. Even as she wondered whether this was a normal reaction to the vaccine, she had no idea how bad her symptoms were about to get.

When COVID-19 vaccines became available in late 2020, millions of Americans lined up to get them, hoping to finally bring an end to the nightmare of the pandemic. Over 80 percent of Americans got at least one dose of a vaccine. Some of them, like Dressen, believe they suffered a serious adverse reaction, or vaccine injury.

No one knows exactly how many people suffered a COVID-19 vaccine injury, but it likely runs into the tens of thousands. Public health officials acknowledge, in theory, that vaccine injuries can occur. But in practice, they are loath to recognize any victims, possibly because they fear vaccine opponents would seize upon such cases. Even before the advent of the COVID-19 shots, the government had a poor track record of caring for people with vaccine injuries.

During the pandemic, people like Dressen tried to do the right thing by getting vaccinated. But she and others who experienced adverse effects became collateral damage in the public controversy over vaccine safety. “The trauma of being dismissed and gaslit by … medical teams is actually just as traumatic as the injury itself,” she told me.

Dressen, a wife and mother of two young children, worked as a preschool teacher when the pandemic hit. She and her husband took COVID seriously. Her job meant she was considered high risk. “I don’t know if you’ve ever seen little kids in masks, but it never goes well,” she said.

Dressen, who lives in Utah, was in great physical shape, often going hiking and mountain-climbing on her days off. She had taken vaccines her whole life without any problems, so when she was offered the chance to participate in the clinical trial for AstraZeneca’s COVID-19 vaccine, she didn’t hesitate. “I loved those kids. I loved their families. I knew some of them had high-risk grandparents ­[living] with them, and I didn’t ever want to be the reason why anyone else died or was harmed in any way.”

The morning after she got her shot, Dressen discovered she couldn’t walk normally. She bumped into doorways as her left leg kept giving out. She made it to work, but the children’s voices sounded unbearably loud. Eventually, she put them in front of an educational TV show and huddled in a corner until their parents arrived. That was the last day of preschool she ever taught.

Nearly every aspect of the public health response to the pandemic ­generated controversy, nothing more so than the vaccine. Mandates, from both the government and private employers, further stoked resentment. Some Americans were forced to choose between their livelihoods and a vaccine they didn’t want to take. For example, more than 8,000 military service members were discharged for refusing the shot, though Congress has now established a path for them to rejoin.

Many worried about the speed with which the vaccines came to market. It normally takes five to 10 years or longer for a new vaccine to reach the public. But doctors insist safety was always a top priority and has never been compromised.

Paul Goepfert is a professor of medicine at the University of Alabama at Birmingham. He called vaccine ­trials “a very rigorous process.”

“We do phase 1-2 studies, which is just in a few people … we just want to make sure that it’s immunogenic, and there are no huge safety issues,” he said. This is followed by much larger phase 3 trials. For the COVID-19 vaccines, these included tens of thousands of participants.

Once the vaccines became available to the public, health officials began looking for signs of trouble. “I think people don’t understand the whole context, and all the real-time surveillance going on,” said Amesh Adalja, an infectious disease specialist and senior scholar at the Johns Hopkins Center for Health Security. Adalja insists public health officials are especially alert to potential problems with the COVID vaccines because they know many people have concerns about them.

FOR DAYS AFTER her symptoms started, Brianne Dressen left frantic voicemails with the clinic that had administered the shot. The painful tingling that started in her arm had spread all over her body, and the effect was like a series of internal electric shocks. She lost ­control of her legs and her bladder. She developed tinnitus that sounded like “a freight train in one ear and ringing in the other.” She was so sensitive to sound, light, and touch that she had to stay in a dark room alone. Her children could not be near her—the stimulation was too painful.

The clinic didn’t return her calls for several days but eventually brought her in for tests. Health workers there suggested she might have had an underlying case of multiple sclerosis and promised they would report her experience to AstraZeneca.

“I still have yet to speak to an actual person at AstraZeneca, to this day,” Dressen said, three years later. The company withdrew its application for FDA approval after long delays caused by irregularities in its trial data. Still, its vaccine was approved and widely used in Europe.

As Dressen’s symptoms spiraled, she went to the emergency room four times before finally being admitted to the hospital. Doctors diagnosed her with “anxiety due to the COVID vaccine.”

Dressen herself was too weak to speak. But her husband Brian said, “Are you kidding me?”

The anxiety diagnosis haunted Dressen as she went to other appointments, where more doctors told her the problem was all in her head. Her husband is a biochemist. Desperate to help his wife, he reached out to other scientists around the world. Eventually, his networking connected Dressen with Avindra Nath, a senior investigator specializing in the nervous system at the National Institutes of Health (NIH). In June 2021, the NIH flew Dressen and about 20 other people who believed they had a COVID vaccine injury to its headquarters for study and treatment.

During that trip, researchers diagnosed Dressen with “post-­vaccine neuropathy”—damage to the peripheral and small fiber nerves. They contacted her doctors in Utah to confirm her diagnosis.

That made life easier, at least when it came to getting treatment. But after that, the NIH canceled a follow-up trip in September 2021. Three months later, Nath asked her to stop telling others with vaccine injuries to contact him. He said they should get care from their local doctors instead.

When I emailed Nath to get his side of the story, an NIH media representative referred me to the FDA, which in turn referred me back to the NIH. But emails Dressen provided confirmed her account of their conversations.

RESEARCH INTO a vaccine’s safety does not stop once it’s approved. Public health officials engage in extensive real-time surveillance to spot potential problems. To that end, the Centers for Disease Control and Prevention (CDC) developed V-safe specifically for the COVID-19 vaccines. It’s a text messaging system that lets people report health issues after they get vaccinated. Over 10 million people participated in V-safe.

The Vaccine Adverse Event Reporting System (VAERS), a database co-managed by the CDC and FDA, is another critical surveillance tool. VAERS collects information about health events after any vaccine—not only COVID-19 shots. Private individuals and medical professionals can submit reports. Human beings experience all kinds of health events all the time, so symptoms suffered soon after vaccination aren’t necessarily caused by the vaccine. If VAERS shows a higher-than-normal rate of certain health problems, it sends out a “safety signal.” Officials then notify the Vaccine Safety Datalink, a collaboration between the CDC and 13 healthcare organizations across America. Goepfert says that allows doctors to look for those specific health effects among their patients.

Adalja notes the Department of Defense first flagged myocarditis, now a widely acknowledged adverse event from the COVID-19 vaccine, as it monitored service members who got the shot. That prompted “multiple CDC meetings and calls and everything about it when they detected that signal,” Adalja said.

Goepfert cited the Johnson & Johnson (J&J) vaccine, which he helped develop, as an example of prioritizing safety. It was one of the first three major COVID-19 vaccines approved in the United States, along with shots from Pfizer and Moderna. But the company took it off the market due to a small number of cases of a rare blood clotting disorder.

Still, all that vaccine monitoring has led to a list of confirmed side effects that, when compared with the broad array some shot recipients say they have experienced, is notably short. The CDC acknowledges anaphylaxis (an acute allergic reaction), myocarditis, and pericarditis for all COVID-19 vaccines. It also acknowledges Guillain-Barré syndrome (the immune system attacking the nerves) and thrombosis with thrombocytopenia syndrome—the blood ­clotting disorder—but only for the J&J vaccine. Tinnitus and ­paresthesia are listed as side effects in Europe but not in America.

JOEL WALLSKOG is an orthopedic surgeon who lives in Wisconsin. When the pandemic hit, he worked for a large healthcare system in and around Milwaukee. Wallskog had an asymptomatic case of COVID-19 in fall 2020 that he believed gave him natural immunity, so he debated not ­getting a vaccine.

“But then I had a good friend of mine that had COVID and almost died and got intubated and got a tracheostomy, and that kind of gave me a little shake-up,” he said.

When he got an email announcing it was his turn to get vaccinated during the rollout to healthcare workers, he drove to a hospital in Milwaukee and rolled up his sleeve for the Moderna shot.

That was Dec. 30, 2020. A few days later, as he climbed out of bed on a cold Wisconsin morning, he noticed his feet were numb. He’d had neck problems and a herniated disk in the past but never issues with his legs. A few days later, though, he was talking to a patient when he realized he could not stand up. He tried to push himself up with his arms and fell down backward.

He immediately ordered himself an MRI, multiple labs, and a spinal tap. “Being in the healthcare system, I can navigate it very quickly,” he said. A fellow doctor diagnosed him with transverse myelitis, an inflammation in part of the spinal cord. He recalled reading that the clinical trials of AstraZeneca’s COVID-19 vaccine in the United Kingdom had been paused over cases of the same condition.

Wallskog reported his condition to VAERS and made multiple calls to the CDC. One of its physicians finally got back to him. “They said they’d look into my case, and I never heard back. Ever.”

Today, Wallskog can only stand or walk two to four hours a day. Both his blood pressure and heart rate are erratic and usually high. Worse, he randomly loses consciousness. As a result, Wallskog was forced to stop working as a surgeon.

After his diagnosis, Wallskog started speaking out about his ­condition. A year and a half later, the healthcare system that still technically employed him launched an investigation into alleged prescribing irregularities.

Wallskog views the investigation as an attempt to intimidate him into silence about his vaccine injury. “It was a threat,” he said. “The message was clear, which was for me to shut up. But I didn’t. I became more vocal.”

The investigation went nowhere, and he eventually took early retirement using his private disability insurance.

BRIANNE DRESSEN initially kept quiet about her injury. She believed her case must be highly unusual and did not want to discourage others from getting vaccinated. She told the parents of her preschool students only that she was too sick to continue teaching—but she didn’t share the cause of her sickness. Over time, however, she started connecting online with other injured people. Many of them had also been diagnosed with conditions like anxiety. She knows of many people who were even driven to suicide.

“I stopped counting at 20,” she told me, but she estimates the number may be as high as 27. Often these people had family members who did not believe the vaccine caused their symptoms. Dressen decided she had to speak up for them: “I wouldn’t have believed it’s as bad as it actually is had I not lived through it firsthand.”

In November 2021, Dressen met Wallskog at a press conference in Washington, D.C. Sen. Ron Johnson, a Republican from Wisconsin, hosted the event, which featured scientists and people with vaccine injuries. But it didn’t raise the kind of awareness they had hoped. The scant media coverage focused instead on Johnson’s history of vaccine skepticism.

Wallskog, Dressen, and others talked afterward and made plans to start a nonprofit to help people like themselves. They named it React19. Dressen says the organization aims to provide emotional, physical, and financial support to those harmed by the COVID vaccines. Today, React19 has over 30,000 members who believe they were injured.

React19 conducts extensive surveys of its members and has found many of them report symptoms similar to long COVID, including fatigue and brain fog. The demographics are similar, with women far more likely to be affected than men. The symptom members say they would most like to be rid of is painful neuropathy. The CDC does not currently acknowledge any of the neuropathic symptoms.

React19 members also frequently report cardiovascular issues, such as rapid heart rate and heart palpitations, and a smaller group reports autoimmune conditions.

No one knows how many people have suffered a COVID vaccine injury. Adverse reactions are both complex and rare, when compared with the number of people who’ve received one or more shots, so it takes time for doctors to understand them. The symptoms themselves are also difficult to track and categorize: Some symptoms reported to VAERS or doctors are actually not connected to the vaccine, while genuine vaccine-related symptoms may go unreported.

Several foreign countries have studied this issue, including Germany. The Marburg University Hospital, which treats COVID-19 vaccine injuries, estimates that 0.2 per 1,000 vaccinated persons suffered an adverse event, or 1 in 5,000 people. If that number held true in the United States, it would amount to 54,000 injured people.

On social media, discussion about adverse COVID vaccine events has focused on sudden deaths of young people, supposedly resulting from myocarditis. Dressen and Wallskog say that’s a serious concern, but they find it unhelpful to speculate without a confirmed link to a COVID vaccine. Both say that only leads to further polarization over the vaccine.

Wallskog insists on looking at the data. “Let’s make sure they get autopsies, and let’s figure it out versus just this reactionary thing, where every death is from the shot, because I don’t think that’s true.”

DOCTORS HAVE long acknowledged vaccines can cause adverse events and even death in extremely rare cases. Despite that, the victims of vaccine injuries struggle to get the help they need.

In the 1980s, Congress established the Vaccine Injury Compensation Program (VICP), also called the vaccine court, as a way to provide compensation. It serves as a no-fault alternative to traditional lawsuits. Congress created the program after several huge, vaccine-­related jury awards threatened to cause vaccine shortages and reduce vaccination rates. When it began, VICP only covered six vaccines for children. Now it covers 16, including the annual flu shot offered to adults.

Attorney Renée Gentry has practiced vaccine-injury litigation for 20 years. She says adding the flu vaccine in particular exponentially increased the number of people eligible to file claims.

But the vaccine court itself never grew. Gentry says the biggest bottleneck is the lack of special masters, the vaccine court’s equivalent of judges. VICP began with eight and that number never increased. As a result, claimants face long delays to get the financial help they need to pay their medical bills. The day before we talked, Gentry argued a case before the vaccine court—a date that had been scheduled two years before. She has seen cases in which seniors injured by the flu vaccine died before their claim was resolved.

COVID-19 vaccines do not currently fall under the VICP because they were developed in response to a public health emergency. And COVID vaccine makers are exempted from legal liability under the Public Readiness and Emergency Preparedness Act of 2005. But people like Dressen can apply for help with medical bills, and families can apply for death benefits, under a program called the Countermeasures Injury Compensation Program (CICP) run by the Department of Health and Human Services (HHS).

Gentry calls CICP a “dumpster fire of a program.” Before the pandemic, it had received about 500 claims, mostly related to the H1N1 vaccine. Only 30 of those were compensated. After the pandemic, 9,500 claims connected to the COVID-19 vaccine flooded the system, plus another 3,000 claims for other COVID treatments. People who call Gentry tell her they spend entire days on hold with HHS without ever reaching a human being. Dressen applied for compensation and has been waiting two years for a response. In October 2023, React19 filed a lawsuit against the HHS alleging the CICP is unconstitutional because it violates the right to due process and a jury trial.

A bill proposed in Congress, the Vaccine Injury Compensation Modernization Act of 2023 (H.R. 5142), would transfer COVID vaccine claims out of CICP and over to VICP. The legislation faces a hard road because vaccines are still a loaded subject. But Gentry is hopeful it will pass. “I think if you want a strong, universal immunization program and you want to protect that—which I think we do for public health—you have to have a vibrant safety net,” she said. “And the safety net is showing a lot of wear and tear right now.”

React19 isn’t waiting for the government to act. It has raised over $600,000 to fund grants of up to $10,000 to help members with medical bills. “I’d like to do more, but it’s certainly more than the compensation program from the HHS,” Wallskog said. He helps review medical bills to determine eligibility.

These days, Dressen manages her pain by getting intravenous immunoglobulin every two weeks and following a strict hydration, food, and sleep routine. She takes several prescription medications, particularly at night so she can sleep.

“Every morning, I’m greeted by this horrific electrical pulsing in my body when the meds wear off,” she said. The toll on her health has been ruinous. Her dream is to live long enough to see her children graduate high school.

On top of all her medical challenges, Dressen sometimes faces abuse online. A few days before we talked, someone on social media told her she belongs in hell because she is “enabling liars and spreading fear.” This kind of abuse doesn’t faze her. “I don’t know how anybody could see what I’ve seen and just turn away from it and not lean in to try to fix it.”