The first clue Aracelly Bibl had that something was wrong with her 18-year-old son in February was when his girlfriend called at 8:23 p.m. and said he had a mysterious red rash all over his chest, a fever and flulike muscle aches. "Take him to the ER," Bibl told her.
The next call came from the emergency-room nurse at 10 p.m. asking Bibl to come to the hospital immediately. Doctors suspected her son, Joseph Clouse, had meningitis B, a deadly bacterial infection of the lining of the brain and spinal cord, and had started treating him with IV antibiotics.
The family had barely started the 212-hour trip from their home in Santa Cruz, California to San Luis Obispo, where Joseph was studying at a community college to be a firefighter, when the nurse called again around 11:30 p.m. Clouse had gone into cardiac arrest. "We worked on him for an hour," Bibl recalls her saying. "But we couldn't bring him back."
Since her son's death, Bibl has tried to make sense of his swift-killing illness. She'd dutifully taken him to his pediatrician for required vaccinations just a year earlier, which included a booster shot for four meningitis strains (known as the meningococcal conjugate vaccine, or MenACWY) that's routinely given to children at age 11 or 12 (with a recommended booster at 16). But she'd never heard about meningitis B or that two vaccines for it had been on the market for several years.
"The doctor never brought it up," Bibl says. "There wasn't even a poster in his office."
Meningitis B is caused by bacteria that live in the nose and throat and can be spread through close contact, such as sneezing or kissing. It may start as a flulike illness but can turn deadly in a matter of hours.
Meningitis B was the strain behind all college meningococcal disease outbreaks over the past eight years. One study using surveillance data between 2015 and 2017 that was published in May found that the incidence rate of meningitis B among college students who most likely live in close quarters was five times higher than those of similar age not attending college.
There are about 20 cases of meningitis B among college students annually, says Sarah Mbaeyi, a pediatrician who studies meningococcal disease for the Centers for Disease Control and Prevention. She says about 12 percent of meningitis B cases result in death, and another 10 to 20 percent result in significant long-term conditions, such as loss of limbs or hearing or cognitive deficits. (There were 134 total cases in 2017, according to the CDC's latest surveillance report.)
The pediatrician for Bibl's son probably didn't mention meningitis B because protection against the infection is considered optional. The advisory committee that guides vaccination policies at the CDC has said that distribution of the meningitis B vaccine should be based on "shared clinical decision-making."
In other words, unless a teen has compromised immunity, an abnormal spleen condition or is a college student in the middle of an campus outbreak, it's up to individual doctors to decide whether to broach the topic.
"While it is not recommended universally for everyone, we as pediatricians should be bringing it up with all young adults and their families," says Henry Bernstein, a pediatrician at Northwell Health in New Hyde Park, New York and former member of the American Academy of Pediatrics' Committee on Infectious Diseases. The parties would then decide together whether it was appropriate to get the vaccine, he added.
If the vaccine is given - only 17 percent of 17-year-olds had been immunized against meningitis B vaccine in 2018 - the CDC recommends it for individuals ages 16 through 23, with a preferred age of 16 through 18 years. (For those with certain health issues that places them at increased risk, the recommendation is at 10 years or older.)
Yet some critics say the policy is confusing for providers and parents because whether a doctor brings it up is arbitrary. "In the medical community, it's interpreted more as a looser recommendation. It's a 'maybe' vaccine, so providers are less likely to talk about it," says Lucila Marquez, a pediatric infectious disease specialist at Texas Children's Hospital in Houston.
One 2016 survey of 660 health-care providers found that only 51 percent of pediatricians and 31 percent of family physicians "always or often" discussed the meningitis B vaccine. The authors of the research, which was published in September, concluded: "Primary care physicians have significant gaps in knowledge about meningitis B disease and meningitis B vaccine."
Although those findings were based on a 2016 survey shortly after the CDC first suggested doctors talk about meningitis B with patients and parents about the availability of two vaccines, lead author Allison Kempe says the same dynamics that might discourage doctors to initiate a conversation are still at work. Those include a shortage of time to talk about an optional vaccine for a relatively rare disease.
"The problem on the provider side is that there are so many required vaccines to discuss and that it's understandable that a vaccine that's not routinely recommended would get overlooked or be considered a lower priority," says Kempe, director of the Adult and Child Center for Health Outcomes Research and Delivery Science at the University of Colorado Denver.
She says that providers might use up their valuable visit minutes going over the human papilloma virus vaccine, general health topics like safe sex or obesity or reassuring patients about the safety of vaccines.
Colleges, meanwhile, are divided on whether the meningitis B vaccine should be required for enrollment. Only 42 colleges or universities require it of new students, according to the Meningitis B Action Project. More than 200 schools recommend it.
Despite the seriousness of meningitis B, and the speed with which it can kill, public health officials say that it doesn't warrant being treated as a widespread health threat. "The incidence of disease is low," says Mbaeyi, adding that incidence rates of meningitis B have fallen since 1995. (The CDC says the reasons aren't clear but include reduced rates of smoking, which is a risk factor for meningococcal disease.)
"There are still questions that remain to be answered, such as the effectiveness of the vaccines and how long immunity lasts. The goal of the current recommendation is to make it an option," Mbaeyi says. "There's not enough evidence to suggest it should be given to all adolescents routinely."
Data shows that both vaccines currently on the market - Bexsero, given in two doses a month apart, and Trumenba, which is administered twice six months apart - provide protection for 24 to 48 months after vaccination, according to the CDC.
But worries that their effectiveness wanes within a couple years prompted the CDC's immunization advisory board to recently recommend a booster shot for previously vaccinated individuals in the event of an outbreak.
There is also the issue of price for an uncommon disease. The two-dose vaccine series costs more than $300, more for a booster, and is usually covered by insurance.
"When you start to make a cost-benefit analysis from a public policy perspective for a rare disease, it gets complicated," Marquez says. "But on an individual level, if you can get protection from a rare but very serious disease, then why wouldn't you get it? It seems like a no-brainer."
Yet for parents like Teresa and Victor Mattison, of Mauldin, South Carolina, who lost their 20-year-old daughter, Victoria, in May, they're devastated that they never got the option to consider the meningitis B vaccine. "In 2017, when she got the main meningitis vaccine prior to college, we thought we were in the clear. There was no discussion about meningitis B," Victor says.
Victoria Mattison had just finished her sophomore year at Clemson University and was hanging out at her mother's dance studio when she complained about ankle pain and severe body aches. Doctors blamed meningitis B and six days later, took her off life support.
"There are no words for this hurt. This was an athletic, healthy volleyball player who got sick out of the blue," Teresa says. "The pediatricians had a responsibility to share this information and let the parents and caregiver make the decision about getting the vaccination."
Vaccination advocate Patti Wukovits started the Kimberly Coffey Foundation in honor of her daughter, who died of meningitis B at age 17 in 2012 in East Islip, New York. Wukovits says parents need to ask their children's doctors specifically about meningitis B and not assume it's covered as part of the main vaccination their children routinely receive.
"Kim came home from school one afternoon with body aches and a fever of 101. By the next morning, she was in multiorgan failure and went into cardiac arrest," Wukovits says. Kim was placed on a ventilator and died a few days later.
"Parents need to know there's an additional meningitis B vaccine and not assume their doctor will tell them about," says Wukovits, a nurse from Massapequa Park, N.Y. "This is 2019. We've had a vaccine available for the last five years and we shouldn't be losing any more children."
This article was written by Sarah Elizabeth Richards, a reporter for The Washington Post.