This guest post was provided by the National Meningitis Foundation (NMA) and first appeared on their Parents Who Protect blog.
As our obsession with basketball’s March Madness has progressed to the Final Four, our efforts to encourage “both shots” in the fight against meningococcal disease remain at center court.
While March is a time when basketball steals the headlines, it’s also a time when meningococcal disease steals our children. In fact, while meningococcal disease can strike at any time of year, the number of cases peaks in the winter and early spring. Unfortunately, for many National Meningitis Association (NMA) members, such as the member of Moms on Meningitis (M.O.M.) and Together Educating About Meningitis (T.E.A.M), March is a time when we remember those we lost to meningococcal disease.
- N.M.A. board member, Leslie Maier lost her son Chris on March 2nd
- M.O.M. Judy Miller lost her daughter Beth on March 12th
And there have been plenty of others who never got their “shot” at life.
The higher incidence of meningococcal disease in March can be seen in the headlines of the last few years.
In March 2014, a Drexel University student died after visiting Princeton University, which was nearing the end of an outbreak that impacted eight students. In 2015, the University of Oregon was battling an outbreak of meningococcal disease with two additional cases appearing in March. In 2016, students at both Penn State and Rutgers University were hospitalized with meningococcal disease in March. This year there were cases on three college campuses by mid-March: Wake Forest University, Old Dominion University, and Oregon State University. There has also been an outbreak, at an elementary school in Virginia.
To rise to the challenge of this other recurring “March Madness”, we must increase our efforts to raise awareness of meningococcal disease and its prevention.
There are two kinds of vaccines that students need to be protected from meningococcal disease, the MenACWY vaccine and the MenB 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 (MenACWY).
- CDC recommends permissive use of meningococcal vaccination against serogroup B at ages 16-23, with a preferred age of 16 to 18 years (MenB). (Click here for more information.)
It’s important that students remain vigilant and be able to recognize the symptoms of meningococcal disease including headache, fever, stiff neck, and a purplish rash, so that you can promptly seek medical attention.
This March, let’s get on the ball and take “both shots” to prevent the other March Madness.
The National Meningitis Association is a nonprofit organization founded by parents whose children have died or live with permanent disabilities from meningococcal disease. Their mission is to educate people about meningococcal disease and its prevention. To stay informed about meningococcal disease and how to prevent it, follow The National Meningitis Association on Facebook and Twitter and be sure to subscribe to their Parents Who Protect blog.
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?
This guest post has been written by meningitis survivor Samantha Bennett.
I have been an artist most of my life. Like a piece of my art, my body tells a story. My story is drawn on my face, it’s been stamped on my arms and legs. My hands are pieces of art by themselves.
My entire life, people have been asking me “What happened to you?”
What happened to me?
My symptoms started like a teething baby with a fever, but within hours the fever worsened and I had a weird purplish spot that appeared on my arm.
Recovery from meningitis was not easy, but the healing from many surgeries lead me to be the artist I am today.
As a little girl recovering from surgery, I would pass time by drawing. My hands were not perfect, but creating art was something that came easy to me. My meningitis surgeries, my hospital visits and artwork have followed me much of my life. I knew that creating artwork with missing fingers made me a bit different, but I had no idea that my art would someday give my scars a voice to help parents and I could use my art as a platform to educate others.
I feel like every person needs a moment in their life that defines who they are, mine came to me when I became a new mother.
Sadly, my introduction into motherhood wasn’t the best. My husband and I lost our first baby at 2 days old. There I was leaving the hospital yet again in my life, but this time being strong for myself and my husband. My heart changed the day I became a mother and my courage grew. I heard my entire life that it was a miracle I survived a deadly disease as a baby. Although our loss was not related to a disease, nothing became more important to me than to spare other parents heartache.
Today, we have two adorably wild little boys— that I am happy to report have been vaccinated to protect them from meningococcal disease. I am a professional artist and a spokesperson with the National Meningitis Association. I proudly use my artwork as a platform to speak out about the dangers of bacterial meningitis and to educate other parents about the importance of vaccination.
I was excited to learn that Every Child By Two has expanded their mission to protect individuals from preventable diseases throughout the life span with their Vaccinate Your Family program.
Unfortunately, about 1,000 -2,600 people get meningococcal disease each year in the U.S. and 10–15 percent of these people die. Of those who survive, about 1 in 5 will have permanent disabilities such as brain damage, hearing loss, loss of kidney function or limb amputations.
The CDC’s Advisory Committee on Immunization Practices (ACIP) voted to recommend MenB vaccine earlier today in order to protect young adults from the deadly “b” strain of meningitis. The full recommendation wording is as follows,
“A serogroup B meningococcal (MenB) vaccine series may be administered to adolescents and young adults 16 through 23 years of age to provide short term protection against most strains of serogroup B meningococcal disease. The preferred age for MenB vaccination is 16 through 18 years of age.”
Several hours of deliberation by the Committee followed by heartbreaking testimony from the National Meningitis Association, Meningitis Angels and several families devastated by the serogroup B strain of meningitis preceded the vote.
Members of the Committee felt that the data available currently regarding the short length of duration of protection with the vaccine, combined with the high cost burden of vaccinating the entire public for a disease that has a relatively low incidence rate, were some of the rationales for including the wording “may be vaccinated” in the recommendation. This wording designates the recommendation as a “Category B or permissive recommendation”
Many who testified feared that a Category B recommendation could cause confusion among providers and the public and would result in a lack of access if insurers failed to cover the costs of the vaccine. The Committee was assured by the CDC that a Category B recommendation will result in the vaccine being covered by the Vaccines For Children Program and the Affordable Care Act.
Meningitis survivor Andy Marso pleaded with the Committee to consider fully recommending the vaccine in order to avoid confusion among providers and inequitable access for the public. Andy contracted meningitis as a college student and racked up $2 million dollars in hospital bills within just the first year. “That would buy a lot of vaccines,” he stated.
“I need your help” he continued, “I want to make sure others don’t get meningitis because every time I hear of another person who contracts meningitis it strikes me in the chest.” “I wonder what if I had done more? What if I had talked to more people? Maybe my warnings could have reached that person. Maybe that person would have gotten vaccinated, or not shared that bacteria-ridden cup, or gotten to the hospital on time…I have a terrible responsibility now…and you can help free me by fully recommending the vaccine.”
As noted in a recent Shot of Prevention post, “the ACIP also recommends that adolescents receive the quadrivalent meningococcal conjugate vaccine (MCV4) at ages 11-12, with a booster dose at age 16, to protect against the A, C, W and Y strains of meningococcal bacteria. Statistics show that nearly 80% of teens have received at least one dose of this vaccine, which is fairly remarkable considering the fact that the vaccine is recommended, but is not mandated for school or college in most states. However, it’s important that parents realize that the MCV4 vaccine does not prevent serogroup B meningococcal disease, which currently accounts for 1/3 of all U.S. cases of meningococcal disease and has been spreading through college campuses in recent years.”
One thing is certain, moving forward there will be a herculean task of educating the public and providers about the new recommendation. Stay tuned for a more thorough post on the meeting in the coming days.
Currently, the ACIP recommends that adolescents receive the quadrivalent meningococcal conjugate vaccine (MCV4) at ages 11-12, with a booster dose at age 16, to protect against the A, C, W and Y strains of meningococcal bacteria. Statistics show that nearly 80% of teens have received at least one dose of this vaccine, which is fairly remarkable considering the fact that the vaccine is recommended, but is not mandated for school or college in most states. However, it’s important that parents realize that the MCV4 vaccine does not prevent serogroup B meningococcal disease, which currently accounts for 1/3 of all U.S. cases of meningococcal disease and has been spreading through college campuses in recent years.
Fortunately, two new vaccines to protect against meningococcal serogroup B were recently approved by the FDA. The Trumenba vaccine is developed by Pfizer Pharmaceuticals and requires three doses, and the two-dose Bexsero vaccine was developed by Novartis Vaccines and Diagnostics (GSK acquired Novartis Vaccines in March 2015, excluding the Novartis influenza division). After these vaccines received FDA approval in late 2014, the ACIP recommended a meningococcal serogroup B vaccine (MenB) for certain high-risk groups at their next meeting in February 2015.
However, many people questioned why the recommendation wasn’t for a broader population. If the ACIP recommends that all adolescents protect themselves with the MCV4 vaccine, why wouldn’t they also be suggesting parents protect their children from the dangers of serogroup B as well? Read more…
Earlier this week, news reports started pouring in of a meningococcal outbreak among students at Princeton University. The number of cases and the lack of any direct connection among the cases helped define the outbreak, and suggested that there would likely be more cases. And while it is not uncommon to hear of meningitis cases among college students, this specific outbreak was concerning to parents and public health officials for one very specific reason.
In the seven cases of meningococcal disease related to this Princeton University outbreak which began in March 2013, all seven were identified to be caused by meningococcal bacteria know as serogroup B. While we are fortunate to have a meningococcal vaccine that is currently recommended for adolescents in the U.S., it only protects against four different serogroups (“strains”) of the disease known as A, C, Y and W. Therefore even vaccinated children will lack protection against the B strain noted in this particular outbreak. That is an unfortunate reality to acknowledge when we consider that serogroup B is responsible for approximately one third of all the bacterial meningococcal cases in the U.S.
So why doesn’t the U.S. meningococcal vaccine offer protection from the B strain and what is being done about it?
The first priority in this recent outbreak has been for Princeton University, the NJ State Department of Health and the Centers for Disease Control and Prevention (CDC) to work together to propose a solution that could help prevent this outbreak from spreading. They have since requested that the FDA allow the use of a vaccine that has not been licensed in the U.S., but has met safety and efficacy standards for licensure in Europe and Australia. Considering the vaccine has been approved by regulatory agencies in other countries, the FDA has agreed to offer the vaccine for use to address this specific situation only. In moving ahead, the University expects to make the vaccine available to students free of charge. Since two doses of the vaccine are required for maximum protection, they will begin administering the first dose in December, with the second dose to follow in February. The vaccine will be offered to all Princeton undergraduate students, all graduate students living in dormitories, and individuals with the specific high risk conditions.
While this action may help to control this specific outbreak, we must also consider another pressing question.
Why is the vaccine available in other countries, but not in the U.S.? And when can we expect a meningococcal vaccine in the U.S. that will offer protection from the B strain for our children? Read more…
Earlier this week I watched a mother lay her sweet 13-year-old child to rest. After a year-long battle with cancer, Kimberly’s fight was over and an entire community turned out to honor her at her funeral. As I sat in the pew of the church with my kids, I tried to imagine what it must be like to have to say goodbye to your own child. As parents we want nothing more than to protect our children. To imagine them suffering and dying is just unimaginable. My heart was heavy for Kimberly’s mother and I spent some quiet time reflecting on all the parents I’ve known who have walked in her shoes.
Evan was a healthy twenty-year-old, honor student, and a pitcher on his college baseball team when he lost his life to meningitis fourteen years ago. I met his mother, Lynn Bozoff, during an immunization conference I attended when I first began writing for Shot of Prevention. I remember when we were first introduced. Lynn briefly told me how she had lost her son and how this inspired her to become the founder of the National Meningitis Association to raise awareness about meningococcal disease, its symptoms, and prevention.
She delivered those words to me like I’m sure she had done a thousand times before, and a thousand times since. They were concise and to the point. While I couldn’t tell from the gentle expression on her face, I knew inside her heart was breaking. I remember feeling an uncomfortable lump in my throat as I thought about my own children and realized the pain she must live with day after day.
I’ve come to know Lynn a bit better over the years, but I will never fully understand the depths of her sorrow. In her latest effort to spread awareness about meningitis, she wrote a touching article on Voices for Vaccines which explains what Evan endured.
“Over twenty-six days, in three different hospitals, meningococcal disease ravaged Evan’s body. Amputations of both arms and legs were not enough to save his life. He lost kidney and liver function, suffered ten hours of grand mal seizures, and was eventually declared brain dead. No parent should have to watch his or her child be disconnected from life support, flat-line, and be carried away.”
Lynn explains that she had always been a mom who vaccinated her children, but at that time she just didn’t know that there was a vaccine for meningococcal meningitis. Nowadays, thanks in part to organizations like National Meningitis Association and Every Child By Two, parents can learn more about the vaccines that are available to protect their children. Through the efforts of the Center for Disease Control and Prevention’s Advisory Council of Immunization Practices (ACIP), vaccine recommendations are constantly being evaluated, and when needed expanded, in an effort to save the lives of children like Evan.
Currently, meningococcal disease can be prevented by the MCV4 and MPSV4 vaccines. While MCV4 is recommended for certain high risk children from ages 9 months through 10 years, the more common schedule includes a recommendation that all 11-12 years olds be vaccinated and a booster dose administered at 16 years of age to cover the period between 16 and 21 when the risk of death from meningococcal disease is at its peak.
Interestingly enough, last year there was considerable debate surrounding the approval of a new infant meningitis vaccine. On June 14, 2012, the Food and Drug Administration licensed Hib-MenCY-TT for the prevention of invasive Hib and serogroups C and Y meningococcal disease in children aged 6 weeks through 18 months. While the vaccine was deemed safe and approved for use, the decision to add the vaccine to the recommended infant schedule would involve considerations that extended beyond safety. Immunization experts had various factors to consider.
First, the vaccine didn’t contain the serogroup B, which means that a significant number of infant cases would not have been prevented, even with good vaccine coverage. To add to this, in reviewing the disease trends, it was determined that there had recently been a reduction of incidence of the disease in infants, which may or may not have been a result of the increase in overall adolescent vaccination. It was then projected that routine vaccination would prevent about 25% of cases in infants, which translates to a total of 44 cases and approximately 2-4 deaths per year. As far as public policy goes, the number was not deemed significant enough to warrant routine vaccination of an entire population. However, in October 2012, the ACIP voted to recommend the use of Hib-MenCY-TT in infants at increased risk for meningococcal disease. It is now expected that by summer 2013 the vaccine will begin to be available through the Vaccine for Children Program.
Since many interested parents followed along with these policy decisions, it’s not surprising to recognize that some parents still want to get their children vaccinated, even if the vaccine is not a part of the recommended schedule. Just yesterday, a mother questioned a group of vaccine advocates as to how she might be able to ensure her son gets this vaccine, even though he does not fall within the high risk category. She realizes that it will not be covered by her insurance, but she does not want to take the risk, no matter how small, that her child may suffer from something that could have been prevented; which is a testament to the work that people like Lynn Bozoff continues to do in educating the public about this deadly disease.
Lynn does not share her story to gain sympathy from others. She tells her story in hopes that parents will be better informed to make the choice to protect their children in every way possible. Even if that means going above and beyond what is considered normal and “recommended”.
She reminds us,
Currently, various states are enacting legislation governing meningitis vaccination. This includes Texas and more recently Tennessee, where they are working towards legislation that would require college students who live on campus to receive a meningitis vaccine in an attempt to prevent a repeat of Evan’s story. If you would like to be alerted to various immunization legislation efforts in your state, be sure to sign up to Get Involved here.
By educating parents about their choices, we hope that they will also consider Lynn’s concerns: