In 2021, Cristina Schoolmaster spent Easter Sunday laid up on the couch, forced to cancel the egg hunt planned for her seven-month-old son. The pain had begun on Friday morning, radiating across the right side of her face. Each day, the sensation crawled across her skull—from right to left and back again. The doctor at the urgent-care clinic felt confident her headache would subside with migraine medication. It did not. Once the right side of her neck began throbbing, Schoolmaster visited an emergency room near her home in Potomac. CT scans revealed no obvious inflammation, abscess, or mass, and she was sent home with another prescription for migraine medicine. She limped into a neurology office a week later. The doctor nodded along as Schoolmaster described the constant, blinding pain in her head, the useless pills she’d already been prescribed twice, and the creeping ache in her left leg. After a few minutes, the neurologist cut her off, ready to diagnose: Schoolmaster was experiencing a migraine, and she had probably strained her neck while holding her baby. Also, she should put some ice on her ankle. By 7 o’clock the next morning, Schoolmaster was back in the ER, begging for more imaging. She spent several hours at the bottom of the triage list, and when her turn finally arrived, the radiology technicians were visibly irritated. “Why are you here?” one grumbled as he injected dye into her arm. “Your scans were fine.” Not long after Schoolmaster emerged from the CT tube, hospital staff filed into her room. “You said you received a Covid vaccine two weeks ago?” Schoolmaster nodded, and their expressions darkened. “Which one?” Like many people, School-master received the Johnson & Johnson vaccine because it was the only one available to her. “I tried to get an appointment for more than two months,” she says. In late March, a time slot opened at a pharmacy on the Eastern Shore, and she was conflicted. Health officials had eased restrictions on public gatherings, and she was eager to get back to work planning full-size weddings. But she’d heard little about the Johnson & Johnson shot, except that it was less effective than Moderna and Pfizer. With gentle reassurance from her parents—a nurse and a dentist—she concluded it was better to receive the third-best than nothing at all. Schoolmaster still wears a papally blessed cross that she had on when she first fell ill. This was, in empirical terms, the right call. The Covid vaccines were nothing short of a miracle. Moderna and Pfizer conferred 90 to 95 percent protection against a never-before-seen virus, while slashing the risk of death to near zero. Though Johnson & Johnson was less impressive in clinical trials, it had two advantages: It was single-dose, and it didn’t require deep refrigeration. Those distinctions were the result of two slightly different approaches to immunity. The Moderna and Pfizer vaccines were noteworthy for their use of messenger RNA (mRNA). These molecules carry schematics to our cellular assembly lines, instructing them to temporarily produce the spike protein found on the coronavirus. Once those proteins enter the bloodstream, immune cells learn to flag them as dangerous, then eliminate any virus carrying them. Compared with traditional vaccines, which require real viral particles, mRNA shots are easier to develop, cheaper to manufacture, and less likely to cause side effects. Companies are already developing next-generation mRNA vaccines for HIV, Lyme disease, norovirus, and a long list of cancers and metabolic diseases. The Johnson & Johnson vaccine is a close cousin of the Moderna and Pfizer shots. Rather than injecting fragile mRNA straight into the bloodstream, Johnson & Johnson uses a modified strain of adenovirus, a common pathogen that can cause mild flu-like symptoms, to deliver those genetic instructions to their destination. In theory, this should do no harm, and scientists weaken the virus further by removing the gene that allows it to replicate inside the body. However, this type of vaccine had rarely been administered outside of clinical trials. When broad use began, an unforeseen complication arose: Some people are, essentially, allergic to adenovirus. Schoolmaster’s remedial scans offered the worst kind of vindication. Her instincts were correct. She wasn’t suffering from a passing migraine. Blood clots appeared throughout her head, neck, and leg—and if they weren’t dissolved soon, she risked a massive stroke or cardiac arrest. Pandemic politics, coupled with the early-aughts panic over vaccines and autism, have transformed the discourse around vaccine injury—and left many survivors of rare but debilitating side effects to fend for themselves. Two days earlier, on April 13, federal health authorities had issued a nationwide pause on the Johnson & Johnson vaccine. Nearly 7 million people had already received it, almost all without a problem. But at least six women came down with an exceptionally rare and confounding condition: Blood clots formed in unusual places, and at the same time, their platelet levels plummeted, increasing the risk of fatal bleeding. One patient had already died, and another was in critical condition. The CDC and FDA urged physicians to stay vigilant. If providers encountered a case, they weren’t to administer heparin, the first-line treatment for blood clots, for fear that it would worsen the condition. That evening, the hospital’s chief medical officer brought news to Schoolmaster: They didn’t know how to proceed, nor did they have specialists who could troubleshoot. In her exhausted state, she struggled to follow the conversation. Nurses begged her to stop crying, warning that it could spike her blood pressure. Her mother—a longtime nurse—pleaded with the administrator. “Do you have children?” she asked. “What would you do?” They’d already called every hospital in the DC area. Those couldn’t help either. Overnight, Schoolmaster unknowingly became the most intriguing patient in the country. Johns Hopkins caught wind of her case. Its hematology department was already studying blood from the other women who’d fallen ill. As soon as a bed opened, the hospital dispatched a transport team, which was selected by lottery due to overwhelming staff interest in the case. Upon her arrival at Johns Hopkins Hospital, the blitz began immediately. “If they wanted more blood, I gave them more blood,” Schoolmaster says, recalling a dizzying array of tests—platelet counts, genetic panels, screenings for esoteric auto­immune diseases. Her blood was shipped to labs around the country, and federal health officials soon labeled Schoolmaster as Patient No. 10. Her condition: vaccine-induced immune thrombotic thrombocytopenia (VITT), an illness so new that it produced zero search-engine results. Doctors at Johns Hopkins Hospital scrambled to solve the mystery of Schoolmaster’s sudden, severe sickness—and to find an effective treatment. The solitude quickly took a toll. Pandemic-era protocols prohibited most visitors. The nurses were habitually sunny, but face shields dimmed their light. Schoolmaster spent much of her time working through a long list of calls—first with her husband, her parents, her never-too-serious cousin. Then the wedding vendors in her contact list, to share passwords for various online accounts. And finally, her brides-to-be, to reassure them that “if I die, the vendors will take care of everything.” On Schoolmaster’s third day of hospitalization, a breakthrough came: The lab had tested drug candidates on her blood samples, screening for adverse reactions. The lead hematologist on her case, Rakhi Naik, was cautiously optimistic about a cocktail of existing anticoagulants. But a small vial of blood cells can provide only so much assurance. Schoolmaster was handed a thick packet of consent forms, with a clear message: This treatment could be lifesaving. She could also bleed to death, lose oxygen flow to her brain, or experience sudden multiple organ failure. Surrounded by anxious doctors and nurses, Schoolmaster took the pills, said an extended prayer, and gazed at photos of her family. Then she waited. Later that day, surrounded by anxious doctors and nurses, Schoolmaster took the pills, said an extended prayer, and gazed at photos of her family. Then she waited. Gradually, her platelets began to climb, from 80,000 to 143,000, then to 180,000. She was going to make it home. Her recovery was long, complicated by three pulmonary embolisms in the days following discharge. It would be several months before she could hold her infant again, and a few more before she could chase him around the house. But today, Schoolmaster is in fine health, which makes her an outlier. The United States had 60 documented cases of VITT arising from the more than 18 million people who received the Johnson & Johnson vaccine, and nine of those people died. Many of the survivors are severely disabled and will never spend another day alone. Biologists are still trying to understand what happened, but a working theory is coming together. A study earlier this year found that all VITT patients seem to share a rare variant of a gene, called IGLV3-21, that’s vaguely associated with immune function. As a result of that genetic defect, some feature of the adenovirus—perhaps a protein or sugar—seems to trigger an allergy-like auto­immune response. Cells begin producing antibodies that bind to a biomolecule called PF4, and the PF4 molecules bind to one another, and those clumps bind to platelets, which bind to other platelets, triggering runaway clotting that consumes platelets far faster than the body can replace them. VITT—like Guillain-Barré Syndrome, a rapid-onset neuromuscular disorder that can cause paralysis—is a well-documented side effect of the Johnson & Johnson vaccine. For this reason, and others, the company voluntarily withdrew its product from the market, citing superior alternatives. But the politics of the pandemic, coupled with the early-aughts panic over vaccines and autism, have transformed the discourse around vaccine injury—and left many survivors of rare but debilitating side effects to fend for themselves. For centuries, public trust has determined the success of mass-vaccination campaigns. In 1721, the 11,000-person city of Boston was nearing 20 years without a smallpox outbreak. Then in late April, mariners arrived from the West Indies with all the hallmarks of the red plague: delirium, fever, blindness, skin ulcers. While most residents fled to the countryside or isolated in their homes, Cotton Mather and Zabdiel Boylston—a fire-and-brimstone minister and a doctor with no medical credentials—carried out the country’s first known immunization campaign. The idea of intentionally infecting people with the virus, regardless of how mild, was universally reviled. Clergymen called it a crime against God. Local physicians said it violated their oath to do no harm. Many people believed it was a plot to overthrow the white slave-owning class, because Mather had learned the technique from an enslaved man. Boylston was harassed by vigilante mobs, a bomb was chucked into Mather’s home, and newspapers called for their execution. But their results were stunning. By the end of the epidemic, nearly 6,000 people had caught the virus and almost one in five had died. About 290 people received the inoculation—which conferred lifelong immunity—and only one in 50 died from related complications. Slowly, word spread throughout the Colonies. Other physicians tried to inoculate their towns, and many were met with continued resistance, if not outright violence. It took decades for inoculation to enter the mainstream, a process that accelerated when General George Washington required every member of the Continental Army to undergo the procedure. Over the next century, various states implemented civilian mandates, which met with familiar arguments about individual liberty and bodily sovereignty. Governments framed immunization as part of the social contract, a necessary sacrifice we make on behalf of our neighbors. Opponents countered that the obligation ran both ways and that society must look after those harmed while carrying out their civic duty. In 1986, the federal government codified this principle into law, following a wave of litigation concerning rare side effects from the diphtheria-tetanus-pertussis vaccine. Enormous damage awards were scaring companies out of the market, and by 1984, only one still manufactured the vaccine. So Congress passed a bill to absolve manufacturers of liability for adverse events. The reasoning: If a disorder affects only one in 300,000 people—as is the case with VITT—it’s unlikely to show up in vaccine safety trials, which rarely include more than 40,000 participants. Once a vaccination effort expands to an entire country, there’s simply no way to predict how each body will react. At the same time, lawmakers created the National Vaccine Injury Compensation Program to pay people who experience severe illness, long-term disability, or death. Cases are heard in the US Court of Federal Claims, and the program is funded by a 75-cent tax levied on most vaccines. “[The VICP] has worked incredibly well for nearly 40 years,” says Renée Gentry, director of the Vaccine Injury Litigation Clinic at George Washington University Law School. Litigants are entitled to due process in a formal legal proceeding, common injuries receive expedited review, and payments can be quite generous, especially when someone requires lifelong care. But right now, none of that applies to Covid-vaccine claims, which are evaluated through a separate process. Following the SARS outbreak of 2003 and a string of bioterrorism scares, Congress passed the Public Readiness and Emergency Preparedness (PREP) Act in 2005. The law granted the Secretary of Health and Human Services authority to declare a public-health emergency—and, with it, extend liability waivers to any company developing new diagnostics, drugs, and vaccines. A new entity called the Countermeasures Injury Compensation Program would be responsible for adjudicating related injury claims, and it would be funded through the federal appropriations process. For many years, CICP existed in obscurity, with no reason to employ more than three or four reviewers. From 2010 to 2020, fewer than 600 claims were filed, mostly concerning vaccines for H1N1, anthrax, and smallpox. Then Covid-19 was declared a public-health emergency, 270 million people received a new countermeasure in rapid succession, and the floodgates opened. As of September 2024, more than 13,000 claims had been filed, alleging a vast spectrum of side effects, from diarrhea and erectile dysfunction to paralysis and sudden death. The program has reviewed only 3,260 of them, and most have been stuck in the backlog for years. Only 58 people have been deemed medically eligible for compensation, and just 16 have received payment, with the median award around $4,000. Not one VITT patient has received compensation to date. “It’s a black hole at the countermeasures program,” says Gentry. “I’ve known two people that have actually gotten ahold of a human.” The staffing problem is improving. Recently, CICP received enough money to expand the team to 30 people. But funding alone won’t solve the problem, Gentry says. The program’s assessment criteria, prescribed by federal statute, are rigid and unforgiving. Claims are automatically tossed if they aren’t filed within a year. All cases are reviewed anonymously, in closed-door proceedings. There’s no option to appeal. The burden of proof is exceptionally high, and claimants must make their case without the assistance of counsel or expert witnesses. “I’ve done this for 23 years, and I still need to read some of the paragraphs that my experts write, like, three times,” Gentry says. Several lawsuits have already been filed in federal court, alleging due-process violations and challenging the constitutionality of the program. It could take years for these to go to trial. Ultimately, Gentry believes the only way for these claims to receive fair consideration is to move them under the jurisdiction of the VICP. That’s never been done before, but there is a clear legal pathway. First, health authorities must recommend the vaccine for routine administration in children. (The CDC made this recommendation in June 2024.) Second, Congress must pass a bill or amendment to levy the 75-cent tax on all Covid vaccines. The odds of that happening are slim to none in a divided Congress, which Gentry says bodes poorly for future pandemics. “The people you’re hanging out to dry are the same ones who were first in line to get the vaccine,” she says. “If you’re really worried about anti-vax sentiment, don’t let this program fail. It will be like throwing kerosene onto the fire.” Schoolmaster isn’t particularly interested in compensation. Her desires are less tangible. She remains pro-vaccination but wants vaccine manufacturers to learn from her and others’ experience. She wants to share their stories without being dismissed as a crank or having their misfortune waved around like a bloody shirt in the political and cultural battles over the pandemic. She wants to feel seen and believed. “I felt like I was on a deserted island. I had this condition. I knew it happened, and it happened to 60 other people,” she says. “All I wanted was to connect with the others that went through this, because it wasn’t being talked about elsewhere.” “The people you’re hanging out to dry are the same ones who were first in line to get the vaccine,” she says. “If you’re really worried about anti-vax sentiment, don’t let this program fail. It will be like throwing kerosene onto the fire.” Finding them wasn’t easy. Schoolmaster contacted high-profile hematologists, who were sympathetic but legally prohibited from sharing patient information. Naik from Johns Hopkins directed Schoolmaster to the National Blood Clot Alliance, which maintains a sizable network of survivors. She sent emails to the office and left voicemails, all unanswered. When she tried to introduce herself in the NBCA Facebook group, explaining her intention to start a support group, moderators promptly deleted her post. Struggling to understand, she reached out to a page admin. “I think we could all help one another,” she wrote to him in a private message. “We are all warriors in the battle against blood clots.” The moderator recognized Schoolmaster’s frustration, but he wasn’t sorry. The climate around Covid was too charged, and he feared nothing good would come from any discussion of vaccines. “Sadly, despite our good intentions of not making anything political, most people don’t follow those rules,” he wrote, noting that he would circle back with her as soon as possible. They didn’t speak again. Schoolmaster has become close with the family of Monica Melkonian, a VITT victim who died. In March 2022, Schoolmaster sent a shot-in-the-dark email to Stan Thomas, a Harley-Davidson enthusiast and occupational-safety officer from Oregon. A journalist had recently interviewed Thomas about losing his wife, Monica Melkonian, to a VITT-related brain hemorrhage. When Thomas received the push notification, he was dining alone, dreading the one-year anniversary of Monica’s death. He read the subject line of the email, closed out his tab while choking back tears, and then spent many hours confirming he wasn’t the mark in some elaborate scam. A few days later, he finally replied. “We started talking, and things were just different for me,” Thomas says. “You’ve got family. You’ve got friends. But they don’t understand. Cristina and I understood each other.” Schoolmaster and Thomas began talking every Tuesday, and eventually they added two more women to their core group. On their weekly calls, they spend little time ruminating on what could have been. Instead, they’re focused on finding joy in their remaining years. “We have families, we have dreams, we have things we want to do, and that’s all changed because of what happened,” says Thomas. “But that doesn’t mean we give up. That’s what this group is about.” Last June, under a bluebird sky, Schoolmaster stood at the center of a ranch in Southern California, surrounded by three acres of olive groves and lavender fields. Monica Melkonian’s only child, Chad, would soon walk down the aisle. When Chad had proposed under the Eiffel Tower a year earlier, Schoolmaster had been among the first to see the photos—and the family all agreed she was the best person to plan the wedding. Schoolmaster had already arranged 100 wooden chairs in a grassy clearing. She had lined the walkway with white flowers. She had sound-checked the microphone Thomas would use to officiate the ceremony. There was one more thing to do before guests arrived. Schoolmaster walked past the 14-foot hedges and disappeared into a thicket of bushes. She emerged with a white rose, placing it on a vacant seat in the front row. This article appears in the November 2024 issue of Washingtonian. The post She Recovered From a Severe Covid Vaccine Complication. Is the Government Doing Enough for Others Who Were Less Fortunate? first appeared on Washingtonian.