It might sound cliché, but it was true: Emily Stillman had a smile that lit up the room and arms that were open to the world. She was interested in everyone she met, and she was deeply funny, with dead-on accents and impressions of other people. Her dream was to work for Saturday Night Live, so she double-majored in drama and theater at Kalamazoo College, a small liberal arts college in Michigan, where she thrived.
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’s headache worsened that night. At 10:30 p.m., after sleeping for a few hours, she asked her roommates to take her to the hospital so she could get some pain relief. She brought her textbooks to pass the time, thinking she’d be there for an hour or two. But she soon deteriorated.
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.
“When I said goodbye to my daughter, it was a really, really cold February morning. She had tubes coming out of every part of her body,” Alicia Stillman said. “I told her, ‘You go. You can be at peace. I’ll figure out what happened.’”
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.
Alicia threw herself into advocacy, creating first the Emily Stillman Foundation and later co-founding the American Society for Meningitis Prevention. She knew she needed to understand the systemic issues behind her daughter’s death, so she even got a Master of Public Health degree. In the months after Emily’s death, she organized trips across the Canadian border for anyone who wanted to get the MenB vaccine, and she did everything she could to advocate for approval of the vaccine in the United States. In 2014, her dream came true: The first MenB vaccine in the U.S. was authorized. “I was thrilled,” she said.
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.
It was a gut punch to Alicia.
“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.”
Meningitis is unsparing. It kills about half of people who aren’t treated—and that treatment must come quickly. Symptoms might start with a fever, headache, or stiff neck, but patients can die within hours.
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.
The first meningitis vaccine was invented by American physician-scientist Emil Claus Gotschlich in 1970, and it was soon deployed in other countries to stop outbreaks. In 1981, a vaccine called MPSV4, or Menomune, was approved for use in the U.S., but because of its short duration of protection it was never widely recommended for children and was only deployed among members of the military, travelers, and others at high risk. A much longer-lasting vaccine, MenACWY, was finally approved in the U.S. in 2005; MenB followed in 2014; and MenABCWY came out in 2023. Once the meningococcal vaccine was widely deployed, illnesses dropped by 90 percent compared to the 1990s, when the disease sickened thousands of Americans and killed hundreds each year. But there has been a sharp uptick since 2021 amid a rise in vaccine skepticism, particularly on the right.
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.
Wold is also a survivor. In 2003, at age 22, she went out with her friends for one last hurrah, two days away from leaving for basic training with the U.S. military. She didn’t have much to drink, but still, she was stricken with nausea, and she started vomiting profusely. At one point, she passed out on her friend’s bathroom floor. In the morning, she asked her friend to take her to the hospital. It was February, so her friend helped her change into warmer clothes—and that’s when they saw the freckle-like rash across her stomach that didn’t fade when she pressed her fingertips against it. She immediately knew why: A year before, a survivor of bacterial meningitis who knew her brother had described the petechial rash to her and explained how serious it was.
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.”
She has devoted herself to advocacy. At the time, the vaccine wasn’t available to the public yet; in a deep irony, Wold would’ve been vaccinated days later at basic training. Then again, the Iraq War would begin a month after she got sick, and she likely would’ve been deployed; she wonders what her fate would have been. “Even though I lost a lot, I’m still lucky,” she said—a harrowing type of luck to involve loss of limb and organ. “I was so thankful to be alive.”
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.
“People forget how serious these diseases can be,” and what a “miracle” the vaccines have been, she said. She hopes stories like hers will remind them.
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.
“When there are mixed messages and not-clear messages, people don’t know who to believe, and they don’t know where to turn,” said Alicia Stillman, who saw the changes in the public’s attitude while she was completing her degree in public health during the pandemic. “Sometimes parents get misinformation, and then they don’t protect their children. When my daughter died, that vaccine was not available to protect her, but it is available now.”
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.”
Since Emily died, her two siblings have gotten married and had children of their own, both naming their babies after the aunt they will never meet. The Stillmans’ lives go on, but they don’t, not fully. Every family gathering, every celebration of a milestone—graduations and birthdays, weddings and births—is bittersweet. “There’s something missing,” Stillman said. “Your family is never complete again.” Emily didn’t get to graduate college; she didn’t get to leave her teen years; she didn’t get to marry or have children. “You lose every future experience with them,” she said.
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.”
She thought back on her decision to focus on public health. It seemed like the only way she could go on, this unshakeable belief that Emily had died so that she would do this work of preventing poor public health decisions—like the delay in approving the MenB vaccine in the U.S. Sometimes, like on the day Trump signed that order, she wonders what she can really do.
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.
