Meningococcal disease is caused by the bacteria Neisseria meningitidis, which enters through the respiratory system or the throat and can eventually lead to potentially fatal infections in the lining of the brain and spinal cord or the bloodstream. The five main types found in the U.S. are A, C, W, Y and B. In October 2015, the CDC’s Advisory Committee on Immunization Practices made a Category B recommendation, which aims to encourage shared clinical decision-making between a patient and their doctor.

“It is important to understand that a Category B recommendation is a ‘recommendation,’ as opposed to a ‘non-recommendation,’ silence on the topic or something that can be ignored,” wrote Gary Marshall, M.D., of the Division of Pediatric Infectious Diseases at the University of Louisville School of Medicine in Kentucky, and Litjen Tan, Ph.D., of the Immunization Action Coalition in St. Paul, Minnesota. “There was not enough evidence to recommend that all 16- to 18-year-olds receive the vaccine, but there was enough evidence to recommend that adolescents and young adults be given the choice of vaccination, in the context of the provider–patient relationship.”

But they emphasize that shared decision-making requires a patient to be aware of the vaccine and disease, something a doctor cannot assume without bringing it up. “Not discussing MenB disease and the vaccine that is currently available should not be an option,” they add.

MenB accounts for about half of all annual cases of meningococcal disease for those in the U.S. between ages 17-23. For every 10 teens and young adults who contract meningococcal disease, one will die from it and six of them will have serious long-term disabilities, such as lost limbs, brain damage, deafness and nervous system difficulties. The disease can move so quickly that some will die within a day.

Behaviors that increase the risk of meningococcal disease include kissing, sharing drinks or utensils and other forms of saliva exchange. Spending time in large groups or living in close quarters, such as in dorms, can increase the risk of transmission.

Three things drove the category B recommendation, explained Paul Offit, chief of the division of infectious disease at Children’s Hospital of Philadelphia and a member of the meningococcal vaccine working group at the CDC.

“First and much foremost is the epidemiology of the disease,” he said. Infections peaked in the 1990s, and about 3,000 cases a year occurred about a decade and a half ago. Cases then began to decrease, even before the vaccine against four serogroup types, A, C, W and Y, became available in 2005. Although C and Y were the most common disease-causing types in the U.S., overall cases declined, even for serogroup B for reasons researchers still don’t understand.

“Those drops suggest there was something going on epidemiologically that led to a change,” Offit said.

Cases continued to drop from around 800 to 1,200 cases a year between 2005 and 2011 to just 372 cases in 2015. Just over half (52%) those cases were caused by A, C, W or Y. The other 48% were caused by B, including those during college outbreaks between 2013 and 2015 at Santa Clara University, University of Oregon, Providence College, Princeton University and University of California, Santa Barbara.

Eventually, two meningitis B vaccines, Trumenba (Pfizer) in 2014 and Bexsero (GSK) in 2015, were developed, but due to different challenges with serogroup B, they were made differently than the ACWY.

“At best, they’re going to cover 85% of the B strains that are out there,” Offit explained, while the ACWY vaccine covers all the strains of those types. Further, the immunity induced by the MenB vaccine only appears to last two to three years, which means older teens would need another dose before heading to college or post-graduation work.

In short: “The epidemiology didn’t suggest a lot of disease out there, secondly you don’t have complete strain coverage, and thirdly you don’t have long-lasting immunity,” Offit said. “That’s what drove the recommendations.”

Offit doesn’t expect to see any changes in recommendations unless and until the disease epidemiology changes, such as a considerable increase in cases. Currently, the vaccine is only likely to prevent roughly around 50 cases a year. Yet he understands why parents of those who died from meningococcal disease would be frustrated with those recommendations.

“From the standpoint of those parents, you don’t know who those children are going to be, so if you know you can prevent 50 cases, even if you have to immunize 3 million people a year, it’s worth it,” Offit said. “In some ways, this makes what [these mothers] do more important because now the advocacy groups take on the role of educating parents and doctors about this vaccine because they put a human face on it."

And that’s exactly what a group of moms who lost their children to meningococcal disease are doing. Alicia Stillman, director of the Emily Stillman Foundation, feels the current recommendation is “irresponsible” because it leaves so many teens and young adults vulnerable to the disease.

Alicia Stillman

All four of these young people died from meningococcal disease, which can be prevented by a vaccine.

“Putting the decision in their court with no guidance lessens its importance,” she said. “ACIP has made the MenB vaccine to be an ‘optional item,’ but who is required to provide the education so the parent and/or patient knows there is an option to choose?”

Stillman had believed her daughter Emily was fully protected, but at 19 years old, a visit to the hospital for what was thought to be a migraine ended with Emily’s death from meningitis 30 hours later. The meningitis B vaccine wasn’t available at that time, but Stillman remains frustrated that so few parents now know it’s available today.

“I know what my family has gone through since Emily died–and it did not have to happen,” Stillman said. “Other families don’t have to go through the horror that we have.”

The small number of cases each year do not change the fact that lives can be saved, Stillman emphasizes. “The word ‘low’ or ‘rare’ is a relative term,” she said. “When it is your child, it does not matter whether the occurrences are one or a million. The bottom line is this disease is preventable with a simple vaccination series.”

Stillman teamed up with Patti Wukovits, RN, director of the Kimberly Coffey Foundation, and two other moms whose children died from meningitis B infections to make a new public service announcement ad letting others know about the MenB vaccine and what it prevents. Wukovits’s daughter Kimberly was just 17 when she died of MenB two days before her high school graduation.

“One of the biggest barriers to higher rates of MenB vaccination is the lack of awareness about meningitis B,” Wukovits said. “Most parents, as we were, are under the common misconception that their child is fully protected against bacterial meningitis after receiving the meningitis vaccine when, in fact, that is not true.”

Wukovits, Stillman and the moms of 19-year-old Emily Benatar and 21-year-old Henry Mackaman therefore created a PSA that drives home the dreams these youths missed out on because of the disease that killed them.

“We want teens, young adults and their parents to know that as of 2014, MenB vaccination is available, and we want to make to make sure they know to ask their healthcare providers to administer it to them,” Wukovits said. “It’s critical that they know that MenB vaccination is an additional vaccine. We want to make sure other parents do not have the false sense of security that we had.”

Their PSA is intended to be dramatic and relatable, Wukovits and Stillman said. You can watch it here.

Their hope is that other families do not suffer as theirs have now that a MenB vaccine is available.

“My child is not a number. She dreamed of being a pediatric nurse,” Wukovits said. “She wanted to save kids' lives. And there she was in the pediatric intensive care unit, but the characters were reversed. My healthy 17-year-old daughter died in my arms. She’s not coming back. Had she been vaccinated, I know she would still be here.”

Disclosures: Dr. Marshall has worked on clinical trials funded by GlaxoSmithKline, Merck, Novartis, Pfizer, Sanofi Pasteur and Seqirus. He also received honoraria for service on these companies’ advisory boards and from Pfizer and Sanofi for nonbranded presentations. Dr. Tan received honoraria from Pfizer, Sanofi Pasteur, Seqirus, Temptime Corporation and TruMed Systems for serving on their advisory boards. Dr. Offit is a co-inventor of the rotavirus vaccine, and his institution sold the patent to Merck.