Meningitus B (MenB) is a frightening illness. It can overtake and kill in 24 hours. College-age students who live in close quarters are the usual victims. If it doesn’t kill, it often causes grievous injury—especially to the extremities—including loss of fingers, toes, feet, or parts of the face. While vaccines against other strains of meningitis have long been available, those for MenB have only been approved in the U.S. for a few months. Thanks to Pfizer and Novartis, we now have two effective FDA approved vaccine choices to protect against this terrible MenB strain. Unfortunately, neither is required on the routine schedule of vaccinations.
In February, I joined with a group of advocates at the Centers for Disease Control and Prevention’s (CDC) Advisory Committee on Immunization Practices (ACIP) in Atlanta to change that. At the top of ACIP's agenda was a vote on MenB’s inclusion on the routine vaccine schedule for persons at increased risk. While the ACIP discussed various topics such as the, “Economic evaluation of vaccinating US adolescents and college students against serogroup B meningococcal disease” or “Considerations for routine use of MenB vaccines in adolescents,” ACIP wasn’t scheduled to vote on including MenB vaccines on routine schedule for adolescents. That was unfortunate, as those who came to Atlanta with personal experience about the horrors with MenB told the committee – many in graphic terms.
Dr. Mary Ferris, student health director at the University of California Santa Barbara, a campus of 30,000 students, faculty and staff led off. In November 2013, her campus experienced an outbreak of four cases of the MenB disease. A 19-year-old lacrosse team member suffered amputations of both legs and extensive skin grafts and scarring to his arms and face. Every word she said resonated. I have excerpted her comments here:
“I know you’re well aware of the devastating consequences of this terrible disease, but you may not know the impact it has on a university when an outbreak occurs. National news outlets camped out on the campus. There was widespread fear and even panic among students, faculty, staff, and the surrounding city. The local school district initially prohibited our student teachers from their sites, and parents drove in to remove their children from the campus. Our campus childcare center asked student volunteers to stay away. Parents demanded that we close the campus, and others did not want their students to come home for Thanksgiving holidays. Our local public health department and CDC had to establish special phone lines to handle the large volume of incoming distress calls. We greatly appreciate all the help they gave us, including handling even international media attention, but we would have much rather avoided this disaster completely by protecting our students in advance with a vaccine that covers MenB. Outbreaks WILL happen again at other colleges, and in fact is happening right now at the University of Oregon, where they are struggling to find a source to pay for the vaccines. Even ONE CASE in a college setting has major repercussions on the institution, and most colleges will not have the resources to pay for vaccines when the outbreaks occur.
We need the ACIP to establish MenB vaccine as part of routine adolescent immunizations, so that our entering students can be protected before they arrive on campus and are exposed to meningococcus, not just after an outbreak occurs. We also need your recommendation for vaccination before college entry so that we can enforce it as an entrance requirement along with MCV4 coverage. The majority of our students are the first generation in their families to attend college, and they come from low income families that will not be able to afford this vaccine unless it is included in their health insurance coverage.”
That is exactly NCL’s position.
The father of a young boy who tragically died of MenB last year spoke of his grief at this terrible event and asked the ACIP why MenB is not on the routine schedule. Andy Marzo, who contracted MenB as a college student in Kansas, described what it felt like to spend weeks in intensive care, his family not knowing whether he would live. And how it felt to lose all of his fingers—he has one remaining thumb—and portions of both feet. His care cost $2 million. Andy has no idea how he contracted MenB. That’s a universal theme among patients. Most are healthy and active. Andy had never spent a day in the hospital and was a healthy and happy journalism student when the infection struck. He gave me a signed copy of his book ,which is a riveting account of his ordeal.
Frankie Milley lost her only child, Ryan, 18 years old, to MenB. She turned tragedy into action by forming the Meningitis Angels. Their mission: Meningitis Angels educates the public, health professionals, child care facilities, schools and universities on not only meningitis but other vaccine preventable diseases and the preventions including vaccines, through personal stories, our educational brochures, posters and videos.
The Angels’ video details the tragedy of menB. She implored the Committee to include the MenB vaccine on the routine schedule.
NCL applauds the Meningitis Angels for their advocacy on vaccines and for mobilizing their members to lobby state legislatures and Congress, to educate consumers on the importance of vaccines and to attend meetings at the CDC and advocate for widespread vaccination.
Adding a vaccine to the recommended schedule is not without controversy. All vaccines cost money—MenB is around $130 a dose. Novartis’ vaccine is two doses spread out over a few months. Pfizer’s is three. Requiring these on the routine schedule means health plans have to cover them.
CDC, like other government agencies, does a cost benefit analysis to determine whether the expense is justified. But after I listened to the director of health in Santa Barbara, to patients, and to parents of deceased children talk about the ravages of this terrible disease, the cost of vaccinations is tiny compared to the cost of treatment, which in many cases exceeded $2 million per patient.
Frankie told me that she has been accused of being in the “pocket of industry” by the very destructive anti-vaccination groups that—in my view—traffic ignorance and fear.
Supporting the efforts by companies that develop these critical vaccines to get these lifesaving products out into the community makes sense. How someone could say to a mother who lost a child to a very preventable disease is to be faulted as too close to industry is beyond me.
Dr. Ferris from Santa Barbara notes that other outbreaks will and have happened at other schools and that is critical to know. I worked with my own son’s health office at Oberlin College to order the vaccine for him. He lives in a dorm and plays on a sports team. He’s in the demographic that is susceptible to this disease. I’d like the see his college inoculate every student on campus and have encouraged them to do so. Until that happens, I’m going to make sure he is protected.
Vaccines have all but wiped out diseases like polio, German measles, diphtheria, influenza, mumps, small pox, measles, and many others that in previous generations caused the death and disability of millions of children and adults. They are safe and they are very effective. We join with the Meningitis Angels in asking ACIP to include MenB on the routine schedule. NCL’s letter and statement at the ACIP meeting are attached.