One Mother’s Mission to Save Lives And Prevent Meningococcal Disease
Jul 25, 2016

After losing her son Evan to meningococcal disease, Lynn Bozof’s life became a mission to prevent other families from experiencing similar tragedies. She has since co-founded the National Meningitis Association (NMA), to help educate people about the dangers of meningococcal disease. In this special State of the ImmUnion post, Lynn addresses some of the most common questions parents have asked her about meningococcal disease and the ways it can be prevented.  

How would you describe the current “State of the ImmUnion” for meningococcal disease? How many cases of meningococcal disease are there in a typical year?  Are enough people protected?

In the 14 years since NMA was founded, vaccination rates have climbed steadily while disease incidence has declined. Although we are pleased with this progress, there is much more work to be done to strengthen the State of the ImmUnion.

Annually, there are approximately 800-1200 cases of meningococcal disease in the United States. As an organization comprised of survivors and families who have lost children to this devastating disease, we at NMA know that one case is too many.

While the Centers for Disease Control and Prevention (CDC) routinely recommends meningococcal vaccines beginning at age 11-12, one in five U.S. teens are not vaccinated as recommended and one-third of those who get the first dose don’t go on to get their booster dose. This leaves adolescents unprotected as they enter some of their most vulnerable years.

What can parents do to protect their families from meningococcal disease?

As a parent who lost my college-age son, Evan, to meningococcal disease, I urge all parents to make sure their child is vaccinated. Vaccination offers the best protection against this disease, and parents should understand that to be fully vaccinated against meningococcal disease, your child should receive two kinds of meningococcal vaccines.

There are five major serogroups of meningococcal disease: A, C, W, Y and B.

MenACWY Vaccine:  The Centers for Disease Control and Prevention (CDC) recommends meningococcal vaccination against serogroups A, C, W and Y for all children at 11-12, with a booster at age 16.

MenB Vaccine: After the FDA approved this vaccine in 2014, the CDC made a permissive recommendation for children ages 16-23, with a preferred age of 16 to 18 years.

Because it behaves somewhat differently, the B serogroup was not included in the ACWY vaccine, and it took longer for scientists to design an effective vaccine.

Today, nearly half (43 percent) of all meningococcal disease cases among U.S. teens and young adults are caused by serogroup B. Since MenB is a relatively new vaccine, and not routinely recommended, many parents and healthcare professionals remain unaware of this vaccine. This is particularly concerning since it’s the most common cause of meningococcal disease in adolescents and the cause of several outbreaks on college campuses in recent years. This is why we urge parents to have a conversation with your child’s doctor to ensure your child is fully vaccinated.

My doctor never mentioned a separate vaccine for serogroup B?  Why is that?

While the MenACWY vaccine has been routinely recommended since 2005, the MenB vaccine received FDA approval in 2014. That is not to say this is a “new” vaccine. The MenB vaccine has been used in other countries for many years already, and safety and efficacy data from these countries has been extensively reviewed by the CDC’s Advisory Committee for Immunization Practices (ACIP). After FDA approval in the U.S., the Committee gave this vaccine a permissive or “category B” recommendation. Unlike a routine recommendation, this recommendation puts more responsibility on parents to request the vaccine, which is why it is important to be proactive and ask your doctor about it.

Are there certain people who should be particularly concerned about meningococcal disease?  How easily does it spread?

Vaccines are recommended for adolescents and young adults because they are at higher risk of contracting meningococcal disease.

The following factors increase the risk of disease: being an adolescent or young adult, spending time in large crowds like parties or dorms, and participating in behaviors like kissing or sharing drinks. But, anyone at any age can contract it.

Other people who are at higher risk for the disease include:

• Infants under 1 year of age
• People living in crowded settings like college dorms or military barracks
• People living with HIV
• Those with persistent complement component deficiency or anatomic or functional asplenia
• People traveling to certain areas outside the U.S. such as the meningitis belt in Africa
• Laboratory personnel who are routinely exposed to meningococcal bacteria
• Those who might have been exposed to meningococcal disease during an outbreak

Meningococcal disease is contagious. It is spread through the exchange of respiratory secretions during close contact such as kissing, sharing drinks or coughing on someone. Although meningococcal bacteria are very dangerous, they cannot live outside the body for very long. This means the infection is not as easily spread as a cold virus. About one in ten people carry meningococcal bacteria in their nose or throat without showing any signs or symptoms of the disease. These people can unknowingly transmit the bacteria to others.

Of those who contract the disease, 1 in 10 will die and 2 in 10 will suffer from long term complications, including deafness, brain damage, or limb amputations.

My child was required to get a meningitis vaccine before middle school. Is she still protected or does she need a booster?  If so, when should she get one?

It sounds like your daughter received the first dose of the MenACWY vaccine as recommended at age 11-12. Since protection wanes in most adolescents within five years, a booster dose is recommended at 16 years of age so that teens can continue to have protection when their risk of infection is at its highest. That’s also a great time to talk to your healthcare provider about the MenB vaccine.

Since I recall reading about outbreaks in colleges, I was wondering, do colleges require meningococcal vaccines?

College vaccine requirements vary by state and school. Many colleges recommend or require the MenACWY vaccine. However, requirements and recommendations are not as common for the MenB vaccine with the exception of colleges that have experienced serogroup B outbreaks.

Even if your child’s college doesn’t require these vaccines, it’s important to talk to your healthcare provider about both vaccines before sending your student off to school. You may also want to consider the vaccines for your child even if they don’t reside on campus or choose to attend college.

If there is an outbreak at my child’s college campus, couldn’t my child just get vaccinated then?

In recent years, there have been several college outbreaks caused by serogroup B meningococcal disease, and in those cases students and staff were offered the vaccine. However, that was only after the outbreak was identified and several students had already been infected, with some resulting in hospitalizations, amputations and even death.

Since meningococcal disease strikes quickly and often has devastating consequences within 24-48 hours, it’s better to get your child both the MenACWY and MenB vaccines before they arrive on campus to prevent a potential infection in the event of an outbreak.

Additionally, it takes time to build immunity after getting vaccinated, and since the vaccine is administered in two or three doses, there is a period between doses in which your child will not be fully protected.

What else do my child and I need to know about meningococcal disease?  

It’s a good idea for both parents and students to learn the symptoms of meningococcal disease. Students don’t always seek the medical attention they need in a timely manner because they are unfamiliar with the symptoms, and healthcare professionals may mistake the early signs of meningococcal disease as the flu or a cold. Any misdiagnosis or delay in treatment can make complications or death more likely.

As the president of NMA, I’ve yet to meet a parent who has lost their child to this disease who hadn’t wished they were able to protect their child with a vaccine.

For more information about meningococcal disease symptoms and prevention, visit the National Meningitis Association or Vaccinate Your Family websites. 

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