When the 19-year-old called her mother, Alicia, one Friday evening in 2013 and mentioned she had a headache, it didn’t seem that strange; she’d been studying hard. It was the last time she would speak to her mother.
Emily didn’t have a migraine. She had bacterial meningitis, an incredibly swift and deadly swelling around the brain and spinal cord. The doctors moved quickly, removing parts of her skull to relieve pressure. But it couldn’t stem the damage underway; Emily’s brain tissue was too damaged by the swelling. Her mother arrived the next morning, but Emily never woke up after the surgery.
After her daughter’s death, Alicia needed to know what she had done wrong. Where had she dropped the ball? Hadn’t she gotten her daughter all of the recommended vaccines? She remembered very clearly that Emily had gotten a booster dose right before leaving for college—but that was the MenACWY shot, she learned. Emily died of meningitis B—a bacterial infection for which a vaccine had been approved in other countries, including a few miles north in Canada, but not yet in the United States. Meningitis B is responsible for all known college outbreaks since 2011.
On August 10, Alicia watched President Trump attempt to erase all of that progress with the stroke of a pen. His executive order on vaccines seeks to classify meningococcal vaccines only for those at high risk or after “shared clinical decision-making,” a previously obscure category of vaccines where the risks may not outweigh the benefits—which would not be the case for these and other vaccines in Trump’s sights. While the order has no legal standing, it directs agencies—including the U.S. Department of Health and Human Services, which similarly attempted to slash vaccine recommendations in January before being halted by a court order—to create plans for reducing vaccinations, and it takes aim at states allowing only medical, not religious, exemptions to school vaccination requirements.
“I’m scared for all of the kids who would have been protected but aren’t now,” she said. “I’m scared for them, and I’m sad for them … for the families that are going to go through what I went through. Because they don’t have to.”
Several types of bacteria can lead to meningitis, and it can also come from fungal and viral infections, parasites, and other causes. But it’s largely preventable. There are three types of bacterial meningococcal vaccines in the U.S.: MenACWY, MenB, and the combined MenABCWY, also known as the pentavalent vaccine. The Centers for Disease Control and Prevention currently recommends meningococcal vaccines for all teens and preteens, as well as children and adults at risk, such as those living in communal settings. Trump’s new order, if government agencies act on it, would change that—and meningitis cases would undoubtedly rise at a faster clip. Even without making any changes, Trump’s order and rhetoric around vaccines will increase confusion and hesitancy.
When the vaccines were approved for wide use in the U.S., “it was a great success,” said Abby Wold, an advocate for the American Society for Meningitis Prevention. “I helped work to get it recommended,” she said. She’s worked with meningitis organizations for the past 23 years, and she’s testified before state legislatures about the importance of recommending the vaccines.
By the time they arrived at the emergency department, Wold couldn’t walk anymore. The rash spoke for itself; within 10 minutes, she was in a room receiving antibiotics, but after half an hour, her kidneys were failing. That night, she went into a coma, with multiple organ failure, for three weeks. When she finally woke, her feet had become necrotic; 11 surgeries couldn’t save them, and she had below-the-knee amputations on both legs. Her adrenal glands also stopped functioning, which is why she has to take steroids for life and has to handle stress very carefully (since adrenal glands create stress hormones). That means she’s unable to work. She also had to undergo skin grafts and serial debridements for the deep wounds in her necrotic skin. All told, she was hospitalized for three months. “And it’s an expensive disease,” she said. “I have lifelong medical costs. My initial hospital bills were $1.4 million.”
When Trump signed the order earlier this month, Wold was thinking about soaring meningitis rates in the 1990s. “Without that vaccine recommendation in place, they’re going to rise back up to that ’90s level, if not more,” Wold said. Pediatricians have an obligation, she said, to remind people about the dangers of vaccine-preventable diseases that many of us have forgotten or never seen in our lifetime—not just meningococcal disease, but also RSV, hepatitis A and B, the flu, and other vaccines that Trump would like to make optional.
When the Covid pandemic hit, longtime vaccine opponents like Robert F. Kennedy Jr., now the HHS secretary, saw an opportunity to take their fringe beliefs to the mainstream, turbocharging anti-vaccine sentiment and a general mistrust of expertise and evidence.
Trump’s executive order also recommended spacing out vaccines. But the evidence is clear that spreading out doses will create barriers to immunization, and it means children go without critical protection. “Because their parents can’t take that extra appointment to go back to the doctor to get one at a time, and the medical professionals in many areas are overworked and don’t have the time to talk about the vaccines that are now shared clinical decision-making vaccines—they won’t even know that their kids are missing it,” Stillman said. When deaths inevitably rise because of lower vaccination coverage, parents will be stricken with the knowledge that their children’s deaths could have been prevented. “God forbid,” she said, “but I know it’s going to happen.”
Stillman tells everyone she can: When you go to the doctor, bring a list of vaccines, and ask when your child will get them. Don’t leave it up to the doctor to bring up vaccines that might now be thought of as optional, even though they’re life-saving. “In these uncertain times, a person needs to take a more proactive approach to protecting themselves,” she said. “We are blessed to live in a time period that [these vaccines] are available to us. Not everybody, including me, had that blessing.”
But then she rallies. She thinks about the times she’s run into someone and they’ve said, “I saw your information,” or, “I saw you on the news, and because of you, my kids are protected.” It’s incremental, yes, but it’s tangible success. Each child vaccinated is a life saved. “It’s working,” she said.
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