The Push to End Meningitis Cases and Outbreaks

In the interest of promoting more robust discourse around the importance of regular vaccinations for serious but preventable contagious conditions, MHA@GW is hosting a guest post series in honor of National Immunization Awareness Month (NIAM). Throughout the month of August, we’re featuring pieces from thought leaders and advocates in the field who were asked to write about the importance of immunization in 2015. Read more about the project in our introduction post.

By Lynn Bozof, National Meningitis Association

Vaccines have saved millions of lives, but there’s one life that they could not save — a life that will always be in my heart. My son who lost his life because he was not vaccinated.

My story started 17 years ago. My son Evan was a junior at Georgia Southwestern University, a pitcher for his college baseball team and in excellent health. On a Wednesday morning in March, Evan called to say he had a terrible migraine headache. When the symptoms worsened, I suggested he go to the emergency room. Hours later, he was in intensive care.

Evan had meningococcal meningitis, a multi-syllabic disease that kills rapidly, without mercy. For weeks, Evan struggled to fight the infection. We were surrounded by doctors and medical teams. We clung to any indication that he might live. But one complication followed another — extremely low blood pressure, damage to the lungs and liver, gangrene of the limbs followed by amputation of all his limbs, seizures and finally, irreversible brain damage. Evan died 26 days after his first phone call to us.

Meningococcal disease, also known as bacterial meningitis, is difficult to say but simple to prevent with a vaccine. Meningitis kills 10 to 15 percent of the people who get it. About 20 percent of those who survive will suffer serious, long-term complications, such as brain damage, hearing loss, loss of kidney function or amputations.

When my son died, there were no routine recommendations for meningococcal vaccination. Now, in part because of years of advocacy from awareness groups and families, we have recommendations in place to protect adolescents and young adults. I have been personally so thrilled each time a meningococcal vaccine has been recommended by Centers for Disease Control and Prevention Advisory Committee on Immunization Practices (ACIP). It doesn’t change the course of my story, but it creates an opportunity to change the story for you and so many others.

There is an alphabet soup of meningococcal serogroups that you need to know about and be protected against. Serogroups A, C, W and Y are included in a vaccine, called a quadrivalent vaccine. This vaccine is recommended as a routine vaccination for all 11- to 12-year-olds and includes a booster dose at age 16.

The other serogroup you need to know about is serogroup B. Most of you have heard about the recent outbreaks of meningococcal disease on college campuses (Princeton University; University of California, Santa Barbara; Providence College; University of Oregon) and many other cases that were not part of an outbreak but still caused heartache. These are all serogroup B cases. It wasn’t until late 2014 that a vaccine became available in the U.S. against serogroup B.

In June the ACIP voted to give the serogroup B vaccine a permissive recommendation for ages 16 to 23. The ACIP suggested that the preferred age range for meningococcal B vaccination is 16 to 18, although any age from 16 to 23 is fine. This recommendation allows older teens, young adults and parents to make a decision about vaccination in collaboration with their health care providers.

However, the only vaccines that save lives are those that are given. Even with a recommendation, it can be a challenge to make sure everyone is protected. This is true for all vaccines, but especially true for meningococcal disease where one vaccine is not enough to be fully protected.

As of 2013, about 20 percent of teens still had not received their first dose of the quadrivalent meningococcal vaccine and about 70 percent of those who got the initial dose did not go back for the booster. We don’t have data yet on serogroup B vaccination rates, but right now it is up to parents to initiate discussions with health care providers to make sure that their children are protected against serogroup B. This will make uptake a challenge.

To meet this challenge, there is a need for ongoing education about meningococcal disease and its prevention. In 2002, I helped found the National Meningitis Association (NMA) with a handful of parents whose families experienced the devastating impact of meningococcal disease. We now have more than 115 advocates across the country, and when we tell our stories people listen, they understand how this could impact their family or their patients and they take action. NMA is proud to be making progress against this disease, but there is always more work to be done.

During National Immunization Awareness Month, as we celebrate the lives saved by vaccines, I hope that you will help us save more by educating others and getting vaccinated against meningitis.

Lynn Bozof is one of the founding members and the president of the National Meningitis Association NMA. For more information, visit the NMA website.