As mothers who have both lost a child, we often say we’re in a club that we want no one else to ever join.
We started our individual foundations and the Meningitis B Action Project after we each lost our young, healthy daughters too soon to a now vaccine-preventable disease, Meningitis B.
Kimberly (Patti’s daughter), 17, died one week before her high school graduation. College sophomore Emily (Alicia’s daughter), 19, died just 36 hours after her first symptoms.
Meningococcal disease is one of the most common types of bacterial meningitis. It is a life-threatening bacterial infection that can affect the lining of the brain and spinal cord, or it can cause an infection in the bloodstream – or both. Ten to fifteen percent of those who contract meningitis die. For those who survive, twenty percent will suffer permanent disabilities such as brain damage, hearing loss, loss of kidney function or limb amputations.
Since our daughters passed away, we have been dedicated to preventing other families from unnecessarily losing a child to meningococcal disease by educating them about the disease and vaccination.
Currently , there are two separate vaccines 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 that there was also a separate vaccine to help protect against Meningitis B. Vaccines to prevent Meningitis B were 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, the ACIP, the Advisory Committee on Immunization Practices, which is a sub-committee of the CDC, chose to issue a ‘shared clinical decision making’ (SCDM) recommendation for the MenB vaccines in 2015.
SCDM recommendations are intended to prompt a discussion between patients and doctors about the need for a particular vaccine. However, those conversations don’t always happen, and research has shown lack of knowledge about the MenB vaccines both from parents and healthcare providers. Uptake of MenB vaccines lags far behind the MenACWY vaccine, despite the B serogroup being responsible for most of the outbreaks across the country since 2011. According to the CDC’s own data, only 3 out of 10 17-year-olds have had one dose of the MenB vaccines.
The good news is that the confusion could soon be lifted. New pentavalent meningitis vaccines, which are designed to help protect against all five serogroups – A, B, C, W, Y, may be approved by the Food and Drug Administration (FDA) as early as this Fall.
We’ve looked forward to this day for many years, when the science made it possible to make protecting kids a straightforward process—and that could be happening in the next few weeks as the ACIP makes final recommendations on the vaccine.
Doctors agree. A recent survey of healthcare providers found that physicians overwhelmingly think that the pentavalent vaccines will: simplify the vaccination process (80%) Increase MenB immunization rates (92%) and be favored by patients (95%).
However, it may not be that easy. Discussions about the pentavalent vaccines at previous ACIP meetings seem to indicate the Committee may be leaning towards a recommendation that would further complicate an already complicated issue.
The primary recommendation being considered has shown to be slightly more cost-effective, yet would make it necessary for providers to stock and discuss three different types of meningitis vaccines with patients – ACWY, B and ABCWY. It could also be a shared-clinical decision-making recommendation, not a routine one, even though we already know the negative impact that an SCDM recommendation has had on the uptake of the MenB vaccine.
We worry that such a recommendation has the potential to limit the availability of meningitis vaccines overall and make the conversation between providers and patients even more complex, worsening already low vaccination rates for Meningitis B and deepening the equity gap for adolescent vaccinations.
As committed advocates and two mothers who have lived through the consequences of this terrible disease, we call for the ACIP to look beyond the cost-effectiveness data and consider the real-life applications and consequences of their recommendations. We encourage the ACIP to make a routine recommendation for the pentavalent vaccine, so that protection can be within each for all those that need it.
Our girls didn’t have this choice. Let’s make sure other kids do.
In 2014, to educate the public about meningococcal meningitis and MenB vaccination, Patti Wukovits and Alicia Stillman each established their own foundations named after their daughters. Both mothers have since joined forces under the Meningitis B Action Project to make sure other parents don’t needlessly suffer the same fate.