A Campaign to Get Needles in Arms

The Facebook friend request confused Patti Wukovits.

“Do I know you?” she asked.

“No,” Alicia Stillman replied, “but I think we have something in common.”

They did. Their children — one a Kalamazoo College sophomore, the other headed to college — had died from a horrific disease that is of special concern on college campuses, where young adults are packed together in close quarters. It elicits dread among campus health officials. And the two women’s daughters had contracted it just as a vaccine was being developed. The vaccine had not yet hit the U.S. market — but even once the shots were available, most college students weren’t getting them.

Not Covid-19. Meningitis B.

A growing but still very small number of colleges require incoming students to get the meningitis B vaccines. But many factors, including weak federal guidance, cost, and concerns about the length of immunity, have left most students unprotected from meningitis B, one of the five major types of meningococcal bacteria and the one most prevalent on college campuses. Some campus leaders also worry that a mandate might pose a barrier to entry for students and parents reluctant about vaccines.

The debate over whether to require the vaccine also touches on a sensitive question: How does a college balance the risk of a campus outbreak — a catastrophe — with the expenses associated with protecting their students against a disease that affects only a few colleges per year? Health-care dollars are limited, critics of a mandate argue, and every risk can’t be eliminated.

While the coronavirus is far more contagious, the questions that colleges have struggled with over the meningitis B vaccine overlap with ones they’ll soon face with Covid-19 vaccines, once enough are available for everyone, and the legal authority to require them becomes clear. What are the costs and benefits of requiring a vaccine? Absent a mandate, what’s the best way to encourage students and employees to get vaccinated? What ethical responsibility do colleges have to keep their students safe?

For Stillman and Wukovits, the mission to make meningitis B vaccines mandatory is personal. Wukovits accepted the friend request in 2013. The two women exchanged messages online. That led to phone calls in which they supported each other through their grief, and resolved to turn their grief into action. In 2017 they started the Meningitis B Action Project, an advocacy group that aims to, among other goals, persuade colleges torequire their students to be vaccinated against meningitis B.

The mothers had something else in common as well.

When they heard that their daughters had contracted meningitis, they were incredulous and confused. They both felt sure that their children had been vaccinated, as adolescents, against meningitis.

They were mistaken. Most young people get shots that protect against four of the five major types of meningococcal bacteria — A, C, W, and Y — at around age 11 or 12, with a booster dose at age 16.

What’s more, the “quadrivalent” vaccine is the one that many colleges require of their incoming students. The problem? Most people ages 16 to 23 who contract meningitis have the B serogroup, the basis of every meningitis outbreak on college campuses since 2011. That means that parents, like Wukovits and Stillman, falsely believe that their children are protected against meningitis.

“It just makes no sense,” Stillman says, ”to require the Men ACWY vaccine and not the Men B vaccine. You’re giving parents a false sense of security.”

Because of campus conditions — the close quarters of dorms and fraternity and sorority houses, for example — college students are at greater than average risk for the disease, which spreads by contacts like kissing or sharing water bottles. It causes death in an estimated 8 percent to 15 percent of those who contract it, even when diagnosed and treated early, according to the World Health Organization. And it can lead to serious long-term consequences, including amputations, for those who survive.

Meningitis is exceedingly unusual: Cases have declined steadily since the late 1990s. In 2018, according to the federal Centers for Disease Control and Prevention, there were 0.1 cases per 100,000 people — literally a one-in-a-million disease. But when it does occur, it’s merciless in its devastation and speed.

One Thursday night in 2013, Stillman’s daughter, Emily, called her to say she had a headache and might be coming down with the flu. Take some Motrin, Stillman told her. It was their last conversation. The Kalamazoo College sophomore’s roommates rushed her to the hospital in the middle of night when her condition worsened. On Friday morning, doctors called Stillman to report that her daughter, who had been healthy and didn’t have any pre-existing conditions, was diagnosed with meningitis and had been intubated. By Saturday, she was brain-dead.

Sari Cicurel

Wukovits’s daughter, Kimberly Coffey, was also healthy before she contracted meningitis B, a year earlier, just days before her senior prom. She was set to enroll in a nursing program in Long Island, where Wukovits lives, and had already picked out a gold prom dress. She was buried in it.

At the time, a vaccine was available in Canada but not in the United States. If it had been available here, Stillman thought, her daughter would be alive. So the Detroit-area resident began organizing busloads of people — her own surviving children, collegebound high schoolers, college students at other campuses that had suffered outbreaks — to go to Canada to get vaccinated. A U.S. congressman joined them on one trek. Lots of media attention followed.

High-profile outbreaks around that time occurred at the University of California at Santa Barbara and at Princeton University. In 2015, after vaccines developed by Pfizer and Novartis reached the United States, Lehigh University started to mandate the shots. A Lehigh student had died from meningitis B in 1997, and two more students had been stricken in 2011 but recovered.

Now, according to a tracker on the Meningitis B Action Project’s website, 42 American colleges require the vaccine, and hundreds more recommend it but stop short of a mandate. That leaves thousands of colleges in the country that don’t talk about it at all.

In the summer of 2018, Indiana State University scrambled to readjust its new-student orientation to include information about meningitis B after Indiana became the first, and still the only, state to require its public colleges to require that incoming students be vaccinated against the disease.

The vaccine itself doesn’t cost the university anything, since it’s covered by student insurance and by a statewide group, the Indiana Immunization Coalition, which provides shots for uninsured students, says Andy Morgan, interim vice president for student affairs. But that year, a couple of thousand first-year students arrived in the fall without having been vaccinated. So administrators worked with the registrar’s office, the residential-life office, and academic advisers to make sure students knew about the requirements. They put holds on spring registration for students who weren’t vaccinated.

Registration holds are the most common stick colleges use to enforce vaccination requirements, according to a recent survey by the American College Health Foundation, with 70 percent of respondents indicating they use them. Other common enforcement tools include preventing students from attending class and limiting their housing options. A small proportion of colleges, 6 percent, report going as far as suspending or dismissing students.

Despite the early challenges for Indiana State, the process became easier, says Morgan. The requirement is part of the routine enrollment process. A transition program for new students notifies them and their families about vaccine requirements in Indiana. Administrators also let students know that the shots are available on campus. “It’s kind of automatic now,” he says.

Indiana State’s experience shows that vaccine requirements are much easier for colleges with clear state guidance and support. Colleges that do require meningitis B vaccination often face an uphill battle against misinformation. Even physicians and other health-care providers aren’t always current on knowledge about meningitis B, and a state mandate reduces confusion throughout the health-care system. In a sector that obsesses over what peer institutions are doing, a statewide requirement also removes worries about competitiveness.

“If your institution’s not in Indiana and it’s wanting to do a mandate, but your competitor down the road isn’t, is that going to prevent a student coming to your campus? I don’t know,” Morgan says. But his chief concern is not enrollment, he adds. “I don’t want to compromise safety to fill seats. One could make the same argument about Covid. A student who really wants to come here but they don’t want to wear a mask. Well, too bad. You’re going to have to wear a mask.”

Educating parents and physicians is a constant battle for Laura Anderson. The medical director of New England College, which requires that students be vaccinated against meningitis B, says many parents tell her that their child’s doctor told them the child has already had the meningitis B shots.

“Once I get my hands on the immunization records, it’s clear they haven’t,” Anderson says. “Unfortunately, there are a lot of providers who think the Meningitis ACWY vaccine is the same as the meningitis B vaccine. And they end up giving the student another shot of ACWY. Then I have to tell them, ‘I’m sorry, you got the wrong vaccine.’ That’s an awkward conversation.”

So why do so few colleges mandate the meningitis B vaccine?

Let’s start with cost. A series of Pfizer’s Trumenba or Novartis’s Bexsero (now licensed to GlaxoSmithKline) tops $300, and that doesn’t count the time and the administrative costs. Vaccine advocates point out that, after colleges’ current students are vaccinated, making it an enrollment requirement means that colleges no longer have to bear the cost of the vaccine itself. Even so, expenses to vaccinate existing students, including keeping track of student records, could make the requirement a tough sell.

Federal guidance is also key. Colleges look to the CDC and other government bodies in crafting their vaccine policies. The centers’ Advisory Committee on Immunization Practices has taken a cautious approach on recommending the vaccine, taking into account its cost, the rarity of the disease, and questions about how long the vaccine lasts. According to the center, available data suggest that protective antibodies decrease within one to two years of vaccination.

The center states that children 11 to 12 years old “should” get the Men ACWY vaccine, with a booster dose at 16. But teens and young adults “may” get vaccinated for meningitis B, it says. That weaker guidance for meningitis B puts the onus on parents and students to ask health-care providers about the vaccine.

Many colleges that have had meningitis B cases, including deadly ones, don’t require the vaccine. They include Kalamazoo, where Emily Stillman was a student when she died,

Kalamazoo recommends that students get vaccinated. Administrators also include information about the shots in their summer mailing list to each first-year student, discuss its benefits at each immunization visit, and have posters in the health center and around the campus about the disease and Emily’s story. But a mandate would require a time-consuming effort to keep track of every student’s vaccine history, says Lisa Ailstock, director of student-health services.

“We explain the risks of the disease on a college campus, and do everything we can to make it easy, accessible, and inexpensive for the students to get it,” she wrote in an email, “but mandating the Men B vaccine, when it is still a category B”— referring to the lower level of CDC guidance — “is beyond what we can do with our small staff at this time.”

It’s too early to make a decision about whether to require the Covid-19 vaccine, Ailstock says, but some of the concerns she has with mandating the one for meningitis B would apply.

The University of Florida doesn’t require the meningitis B vaccine, says Ronald Berry, director of the student health-care center. But the university was using its flu-vaccination campaign to nudge students to also get vaccinated against meningitis B — until Covid-19 hit.

The state-university system’s governing board decides which vaccines its colleges should require. As for the Covid-19 vaccine, Berry says he would like to see the board make it mandatory for students once it receives non-emergency Food and Drug Administration approval, and he and other college-health-center directors plan to argue for a mandate.

But making the case to require a meningitis B vaccine wouldn’t be fruitful, he says. “The number of lives that it saves, because it’s so uncommon, is so low that from an economic standpoint, the big organizations like the state would probably not mandate it.”

Some college administrators also worry that requiring a vaccine would discourage applicants from families that are opposed to vaccination. Experts say meningitis has largely escaped the notice of antivaccine activists, but that the entire movement against immunization has intensified.

“Trying to apply a mandate in 2021, in the political, kind of crazy disinformation age we’re in,” says Todd Wolynn, a pediatrician who works to combat vaccine disinformation, “you’ll see administrators, whether they’re going to admit it or not, worried about being attacked.”

With Covid-19, vaccine hesitancy is the ominous unknown that hangs over the battle to reach herd immunity. Experts expect the FDA in the months ahead to approve the vaccines for regular use, clearing the path for colleges to require them. Advocates of requirements note that colleges, overseeing tens of millions of students and employees, can play a key role in the U.S. vaccination effort.

Noel T. Brewer, a professor of health behavior at the University of North Carolina at Chapel Hill, says the military and many health-care facilities will probably mandate the Covid-19 vaccine. He would like to see colleges require it as well, saying he would feel safer in the classroom with everyone vaccinated against Covid-19.

“It’s hard to read the tea leaves on universities, but I also can’t imagine them not requiring the Covid-19 vaccines,” Brewer says. “Everything about Covid-19 has been incredibly disruptive to the well-being and even viability of universities. Coming back to anything resembling normality would require vaccination.”

He acknowledges that the calculation for an unusual disease, like meningitis, is different. “But it’s also very straightforward for someone in those meetings at a high level to ask the following question: Who in this room wants to explain to the news that the child who dies from meningitis could have been alive if we had passed a requirement?”

Sari Cicurel

It’s a question that Wukovits and Stillman often ask in their quest to get colleges to require the meningitis B shots. Because of Covid-19, they haven’t been traveling to campuses to make their case directly to colleges. But because of the pandemic, to their knowledge there hasn’t been a single case of meningitis B on a college campus in the past year.

It’s certainly not because of improved vaccination. Immunization rates have dropped for meningitis B and other nonmandatory vaccines, as Covid-19 has dominated health officials’ efforts, and people generally have had fewer health-care visits. Stillman says the preventive measures taken against Covid-19 have also protected against meningitis B. But she worries that once students get their Covid-19 shots and return to prior behaviors, they’ll be even less protected against the disease that killed her daughter.

An accountant for 35 years, Stillman went back to get a master’s degree in public health, to have more credibility in making the case for vaccine requirements. But she’s also frustrated at what she believes to be the lack of accountability in protecting people against the disease, with no college or other entity shouldering the blame when tragedy strikes.

“ACIP says ‘not me,’” Stillman argues, referring to the CDC committee. “The schools say ‘not me.’ They don’t want the expense of changing requirements. Then some in the medical profession think it’s an extra step and they’ll say ‘not me.’ And parents don’t always have the knowledge. So when a kid dies, who’s responsible?”