We both lost daughters to meningitis; let's seize this chance to protect all kids with a new vaccine

As mothers who have both lost a child, we often say we’re in a club we want no one else to ever join.

We started individual foundations and the Meningitis B Action Project after we each lost a young, healthy daughter to a now vaccine-preventable disease, meningitis B.

Kimberly (Patti’s daughter) was 17 when she died one week before her high school graduation. College sophomore Emily (Alicia’s daughter) died 36 hours after her first symptoms at age 19.

Meningococcal disease is one of the most common types of bacterial meningitis. It can affect the lining of the brain and spinal cord, cause an infection in the bloodstream, or both. It is life-threatening — 10 to 15% of those who contract meningitis die. Twenty percent of survivors suffer permanent disabilities such as brain damage, hearing loss, loss of kidney function, or limb amputations.

Since our daughters died, we have been dedicated to preventing other families from losing a child to meningococcal disease by educating them about the disease and vaccination.

Now, two separate vaccines are needed to be fully immunized against the five main types of meningococcal bacteria (A, B, C, W, Y). Both of our girls had received their MenACWY meningitis vaccines, but we had no idea they weren’t protected against meningitis B. The MenB vaccine was not available in the U.S. at the time.

The MenACWY vaccine has a routine recommendation for adolescents and those at high risk for contracting meningococcal disease. However, an immunization subcommittee of the Centers for Disease Control and Prevention issued what is called a ‘shared clinical decision making’ (SCDM) recommendation for the MenB vaccine in 2015.

SCDM recommendations are intended to prompt a discussion between patients and health care providers about the need for a particular vaccine. However, those conversations don’t always happen, and research shows both parents and health care providers lack knowledge about the MenB vaccine. Uptake of the MenB vaccine lags far behind the MenACWY vaccine, despite meningitis B being responsible for most of the nation’s outbreaks since 2011. CDC data shows only 30% of 17-year-olds have had one of two doses of the MenB vaccine.

The good news: A new vaccine may be approved by the Food and Drug Administration as early as this month that can help protect against all five types of meningococcal bacteria. We’ve long looked forward to the day when science made protecting kids from meningitis a straightforward process.

However, it may not be that easy. Discussions about the new vaccine at previous CDC subcommittee meetings indicate it might make a recommendation that would further complicate an already complicated issue.

That recommendation is slightly more cost-effective than other options, but requires providers to stock and discuss with patients three different types of meningitis vaccines — ACWY, B, and ABCWY — something they are unlikely to want to do. The MenB dose would also remain an SCDM recommendation, despite the negative impact an SCDM recommendation has had on uptake of the MenB vaccine. This could worsen already-low vaccination rates for meningitis B and deepen the equity gap for adolescent vaccinations.

As advocates and two mothers who have lived through the consequences of this terrible disease, we call for the CDC subcommittee to look beyond the cost-effectiveness data, consider the real-life consequences, and make a routine recommendation for the new vaccine so protection can be within reach for all who need it.

Our girls didn’t have this choice. Let’s make sure other kids do.

THIS GUEST ESSAY reflects the views of Patti Wukovits of Nesconset and Alicia Stillman of Michigan, co-founders of the Meningitis B Action Project.