Three mothers who have lost college-age children to the disease speak out.

By Maggie O'Neill
June 12, 2019

When it came to her sons’ medical care, Aracelly Bibl did everything right. She prioritized the health of her three boys, knew their pediatrician's phone number by heart, and made sure they were up to date on their recommended vaccinations.

But all of her diligence still didn't protect her oldest child, Joseph Clouse, from meningitis B, which killed him this past February. He was 18 years old.

His  says simply, “Joseph Tyler Clouse was stolen from us within a matter of hours on February 13, 2019, due to meningococcal septicaemia, caused by a rare and aggressive form of bacterial meningitis B."

Clouse isn’t the first otherwise healthy young adult to be killed by meningitis B—an inflammation of the linings of the brain and spinal cord that can be caused by bacteria or a virus. But it's especially heartbreaking, because a vaccine that could have prevented him from contracting this dangerous illness came on the market in the US five years ago.

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In fact, two vaccines that protect against meningitis B have been approved by the FDA: Bexsero, which was approved in 2015, and Trumenba, approved in 2014. Both Bexsero and Trumenba are given in a two-dose series. The CDC says the shots should preferably be administered between ages 16 and 18.

So why are young adults like Clouse dying from a disease that can be prevented by not one but two approved vaccinations that are widely covered by insurers?

Courtesy of subject

It boils down to the meningitis B vaccine recommendation made by the Advisory Committee on Immunization Practices (ACIP) after the first meningitis B vaccine hit the market. The ACIP is a group of external advisors to the CDC whose official recommendations guide vaccine policy nationwide. If the ACIP decides all children should get a specific vaccine, pediatricians will communicate this to parents.

But if the group decides that a certain vaccine doesn’t need the strongest possible recommendation—which is the case with the meningitis B vaccine—there’s a good chance pediatricians won't let parents know about it anyway, so parents have no reason to consider giving it to their children. (The chair of the ACIP, José R. Romero, MD, turned down Health's request for comment.)

This is what happened to Bibl. Because the CDC, relying on the guidance of the ACIP, didn't recommend the meningitis B vaccine to all children, her pediatrician didn’t inform her that it even existed—and could have prevented her son’s death.

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What is meningitis B?

“While it’s not very common, if you get meningococcal B, it is a nasty disease,” Litjen Tan, MD, chief strategy officer at the Immunization Action Coalition (IAC), tells Health. The IAC is a national nonprofit authority on vaccination policies that aims to increase immunization rates.

Meningitis B is more prevalent among  than kids and adults in other age groups; that's because it's easier for infections to spread among young adults living in cramped living quarters, such as dorms. Symptoms of the disease include sudden high fever, stiff neck, severe headache, nausea, and vomiting, as well as convulsions, rapid breathing, and confusion. A dark purple rash will usually appear on the arms, legs, or torso, too.

Part of what makes meningitis B so deadly is that many students and parents don’t know about it, and many symptoms mimic those of more common illnesses, such as the flu. It wouldn’t be unreasonable for a college student to assume they had the flu and then try to sleep off some of the symptoms. But if they actually have meningitis B and try that approach, there’s a good chance the illness will overcome them and turn fatal.

Both Alicia Stillman and Patti Wukovits lost their daughters to meningitis B. Wukovits’ daughter, Kimberly Coffey, was 17 and a senior in high school when she succumbed to the illness in 2012. Emily Stillman was a college sophomore when she died from meningitis B in 2013. Both mothers have since created the  to build awareness of the disease that killed both their daughters before the vaccine were approved. They spoke to Health about how meningitis B forever changed their families.

“Kimberly was perfectly healthy. Sitting in her classroom. Next day she’s in the ICU fighting for her life,” Wukovits recalls.

Stillman echos her heartbreak. “People think [meningitis B is] so rare. But when it’s your child, 100% of that child just died. It doesn’t matter what the statistics are,” she says.

Stillman and Wukovits now work to educate parents and students about the dangers of meningitis B. But to their frustration, even after years of telling their stories, neither of the approved meningitis B vaccines have been recommended for the majority of American adolescents.

"It’s really disappointing," says Stillman. "Here we are six-and-a-half years [after my daughter’s death]. Kids are still dying. We reach out to the academic community, the medical community, parents, counties, and states. So where is the ball dropping?”

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Which meningitis vaccination do people usually get?

The ACIP strongly recommends that all preteens between ages 11 and 12 get the single vaccine that protects against four types of meningitis: A, C, W, and Y. Because of this recommendation, these four meningitis illnesses are almost unseen in the US, Dr. Tan says.

Meningitis B is not unseen, however. “Over 50% of all [meningitis] cases in the United States are caused by serogroup B. All college outbreaks since 2011 [have been] caused by serogroup B. Why are we not even mentioning men B? It doesn’t make sense,” Stillman says. Also alarming is that most colleges don't require the meningitis B vaccination when a young person enrolls (even though the  has called out the dangers of meningitis B). 

The ACIP used to give the meningitis B vaccine a “category B recommendation,” says Dr. Tan. This was opposed to the stronger category A recommendation. The ACIP started using different language in February 2018, and vaccines are no longer given category A or B recommendations by the ACIP.

“A mistake was made by calling it category B. The label kind of carried,” Dr. Tan says. Now, instead of labeling the meningitis B vaccines as “category B,” the ACIP says the vaccine should be administered based on “clinical decision making.”

What this translates to is “let’s recommend it for individuals [instead of whole populations] based on clinical decision making,” Dr. Tan says. “The doctor’s job is to talk to you and say, ‘We have this vaccine.’” However, that conversation doesn’t always happen when soon-to-be college freshmen check in with their pediatrician right before heading off to school—if they even check in at all.

Says Stillman: “The ACIP has said it’s a clinical decision to be made between the medical professional and the parent. If that’s the case, I interpret that to be that if a parent is tasked with making this decision for their young person, or the young person is going to make the decision, they need to know there is a decision to be made. They need to know of its existence. How are we certain that they know about it? Many still don’t."

Stillman adds that young people who receive only the meningitis A, C, W, Y vaccination are merely partially protected. She likens the question of “Do you want your child to also receive the meningitis B vaccine?” to “Do you want them to be 100% protected—or just 80%?”

“What parent is going to say, ‘No, thank you. I’ll stick with 80’?”

RELATED: 7 Things You Need to Know About Vaccines

Why is the meningitis B vaccine not recommended as strongly as the A,C, W, Y vaccine?

In short: cost. Dr. Tan says there’s a problem with formally recommending a meningitis B vaccination for every young person in the US. “We’re not infinitely rich. The resources to vaccinate every adolescent in our country—it’s immense. It’s just not practical,” he explains.

 That said, the current recommendation isn’t working either.

“We’ve got to figure out a way to manage this. We’re depriving people of a very good vaccine who might want to get protected,” Dr. Tan says. He places the blame on doctors who don’t bring up the disease or the vaccine when they meet with their patients. “That’s an implementation problem. If you fail to talk about [the meningitis] B vaccine, you’re failing your patients. [Health care systems] need to have an internal policy where everybody agrees you’re going to talk about the vaccine,” Dr. Tan says.

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What do parents and young people need to know?

Stillman and Wukovits continue to speak out about the vaccine that could have saved their daughters’ lives. However, parents still aren’t warned about the option to get Bexsero or Trumenba for their children. 

Says Bibl: “Nobody ever said—doctors never said, ‘Oh, you’re a college student. There’s another vaccine for meningitis B. Have you been vaccinated for it? Most people aren’t. The pediatrician never brought up the other vaccine because they don’t know.”

Would Bibl have insisted on the vaccine for Joseph had she known about it? “I would have done it in a second if I knew. I didn’t know. Parents should be made aware. We should all have the choice. Also, colleges should require it. I don’t think we should be waiting until somebody dies for a college to decide, ‘Now we’re going to offer the vaccine or make it a requirement.’”

If your child is in college or headed there soon, ask their doctor about the meningitis B vaccine—because they might not.

Stillman sums up the issue, saying, “How many is okay? It’s okay for one to die? More? What’s the magic number?”

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