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 was written by Alethea Mshar out of concern for her son Ben. A version of this post originally appeared on her blog Ben’s Writing, Running Mom.
Like all parents, my child’s health is very important to me. That’s why, even after getting an autism diagnosis for my son, I still believe in and advocate for vaccinations.
I don’t believe autism is caused by MMR or any other vaccinations.
The allegations made by Andrew Wakefield, the man who tried to convince the world of an MMR vaccine-autism link, were based on falsified data, yet he continues to make his claim to try to frighten people throughout the world. This article by Brian Deer systematically addresses Wakefield’s flawed theories and debunks the autism myth that Andrew Wakefield has perpetuated.
As if that weren’t enough, there have been countless studies that have investigated any possible link between vaccines and autism and no evidence can be found to support such a link. (You can access the latest published research here, here and here.)
The science is clear, and yet there are many autism advocacy organizations that continue to install fear in parents who just want what’s best for their children.
As this Newsweek article explains:
“Despite the science, organizations involved in the anti-vaccine movement still hope to find some evidence that vaccines threaten children’s health. For example, the autism advocacy organization SafeMinds, —whose mission is to raise awareness about how certain environmental exposures may be linked to autism, recently funded research it hoped would prove vaccines cause autism in children. But this effort appears to have backfired for the organization—since the study they funded failed to show any link between autism and vaccines.”
Alycia Halladay, chief science officer at the Autism Science Foundation, commends SafeMinds for financially supporting the study, but she worries that some autism advocates may be asking the wrong questions.
“I’m not saying that we need to stop funding research in the environment, because we know the environment does impact neurodevelopment,” she says.
However, Halladay explains that organizations that look to blame vaccines for causing autism are “playing whack-a-mole”.
“First, the proposed association was between the MMR vaccines and autism. Then that was disproven. Then it was the thimerosal components in vaccines; now that has been further disproven in a carefully designed animal model study that aimed to specifically examine that question. It has also been suggested that the association is because of vaccine timing, but that too has been disproven. The target always seems to be moving, and the expectation is that scientific resources will be diverted to address each new modification of this hypothesized link.”
While there may always be people who will believe there is a link between vaccines and autism, despite the science that proves otherwise, I’m writing today to explain another issue that has swayed my decision to support vaccines.
This issue is one of life and death for my son Ben.
I realize, very clearly, that without vaccinations my son would die.
That is why I am a fan of modern medicine and the science that makes vaccines possible. If Ben had been born a century sooner, he wouldn’t have survived his Hirschsprung’s disease. Had he been born less than a half century sooner, he wouldn’t have survived leukemia. As it is, we have come face to face with his mortality several times. I see vaccinations along the same lines as chemotherapy – far from perfect, but with the help of the scientific method, getting better all the time. Vaccines, and even chemotherapy in Ben’s case, are the best shot we have at giving our child a long, healthy life.
For us, though, it goes a step further.
Ben is also immunocompromised.
That means that even fully vaccinated, he doesn’t have enough ability to fight off diseases. He is that kid. The kid who needs herd immunity. He’s the reason our whole family gets flu shots and chicken pox vaccines. He’s the kid who needed boosters for pneumococcal vaccines – because his body lost immunity to them. Even though we do our best to protect him, he’s the kid that could get infected during a measles outbreak. And he is the kid whose body is weak and who is very likely to succumb to a disease like measles, which would inevitably hospitalize him or worse…cost him his life.
I wrote this piece after weeks of consideration. I realize this could ruffle feathers. So I ask…
If you don’t vaccinate, have you researched the diseases we vaccinate against as well as the side effects of vaccinations? Have you seen what polio and diphtheria can do? Do you realize that if measles encephalitis sets in that your child will be isolated in the Intensive Care Unit while you wait to find out if he or she is the lucky one who survives with brain damage? And do you realize that, statistically speaking, the greatest risk in getting a vaccine for your child is driving your child to the doctor’s office?
I realize the rhetoric goes around and around, and that I’m about as likely to change your mind as you are likely to change mine. But if there’s that tiny chance that you’re really considering all the facts, I’m hopeful that Ben’s face and plight would make a difference. After all, I am his mother, and I must do everything I can to protect him and keep him healthy. I have to try.
I have a sad feeling that it will take a true epidemic to turn the tide. I just hope that my child will not end up as a casualty. He is not a statistic, nor would I ever want him to be one…he’s our precious child and we don’t want to lose him.
So please remember, your vaccination status could mean the life or death of a child like Ben.
Every Child By Two is collaborating with various immunization advocacy organizations to collect personal stories about the value of vaccines. These stories will then be shared with state and federal legislators throughout National Immunization Awareness Month (NIAM) in August. Help ensure that our government representatives know that our country, our communities, our students and our families deserve protection from vaccine preventable diseases. Join the movement and speak out in favor of vaccines by sharing your story at the following link: bit.ly/28NoZCR.
Parents who have watched their child suffer from a vaccine preventable disease can often feel blindsided. Prior to their own personal experiences they’re usually unfamiliar with the dangers of these diseases. Sometimes they don’t realize that these diseases are a threat or that they continue to infect people around the country and the world. In cases of influenza and pertussis, we often see children who were unvaccinated because they were too young to start receiving these vaccines. In other cases, like those involving meningococcal serogroup B, parents were simply not aware of the need for, or the availability of, a certain vaccine. There are even times when parents who have lost a child to a vaccine preventable disease are surprised to learn that some people choose not to vaccinate, and in doing so contribute to disease outbreaks that put others at increased risk.
In the 25 years that Every Child By Two has spent trying to protect families from vaccine-preventable diseases, they’ve had the distinct honor of working with many parents who’ve lost a child to a preventable disease. These Parent Advocates want to prevent such a tragedy from happening again and in working with organizations like Every Child By Two, they’re able to use their personal stories to help educate the public about the need for vaccines.
Katie and Craig Van Tornhout are two such people who have turned a tragedy into a personal mission.
After five years and four miscarriages this young couple believed their prayers had been answered when they finally welcomed their precious daughter Callie into their lives. However, their joy quickly turned to sorrow on January 30, 2010, when Callie died of pertussis at only five weeks of age.
Callie was too young to have started her infant DTaP vaccination series, which begins at 2 months of age and helps protect against tetanus, diphtheria and pertussis. In the months that followed Callie’s death, the Van Tornhout’s learned a lot about the dangers of pertussis and the importance of adult Tdap vaccine. They learned that pertussis is especially deadly to infants and that
most infants who contract pertussis are typically exposed by an adult whose own pertussis immunity may have waned from the vaccine they received as a child. And they learned that Callie contracted pertussis in the very hospital she was born in.
In an effort to prevent other children from suffering the way Callie had, the Van Tornhout’s are now helping to educate others about the risk of pertussis. They not only encourage other parents to fully vaccinate their children, but they stress the importance of adult Tdap boosters, which are especially important for expectant mothers as well as the close family members and caregivers of young babies.
Over the past six years they have channeled their grief into something positive.
Barbara Loe Fisher may be right about one thing.
We need a better Tdap vaccine to prevent pertussis (also known as whooping cough).
However, her opposition to legislation in Indiana that would require hospital employees be up-to-date on Tdap, flu and MMR vaccines is unsupported. Fisher has publicly defended her position in a FOX28 news clip when she states that Tdap vaccines should not be mandated because they don’t work. However, this is an example of what’s known as a nirvana fallacy.
Tdap vaccines do work. Maybe not 100% of the time, but that doesn’t mean they don’t work.
In fact, data shows that pertussis vaccines protect about 7 out of 10 people who receive them. That’s enough for the World Health Organization to justify using it across the globe to help prevent pertussis, as well as diphtheria and tetanus. Sorry Barb, but in lieu of a better option to prevent a highly infectious and sometimes deadly disease such as pertussis, the Tdap vaccine is the best defense we have. It’s certainly better than the 0 out of 10 people who are protected by avoiding vaccination all together.
Interestingly enough, what Fisher avoids admitting is that her opposition to the whole cell pertussis vaccination (DTP) is why we are in the situation we are in today. Back in the 80’s, Fisher led the charge against the whole cell pertussis vaccine, claiming it had too many adverse events. This prompted the development of a more purified (acellular) pertussis vaccine (DTaP). By 1997, a newly licensed DTaP vaccine was being recommended by the ACIP in place of the DTP vaccine for the full 5-dose pediatric schedule. While the new vaccine appeared less likely to provoke adverse events, studies have since shown that it has not been as effective in providing lasting immunity.
The truth is, Fisher has never really been interested in making vaccines safer. She co-founded the National Vaccine Information Center in 1982 to help organize a movement of vaccine refusal and oppose any public policy that endorses the use of vaccines.
Unfortunately, while we are stuck with a less than ideal vaccine, children like Callie Van Tornhout are dying from pertussis infection.
People of all ages can be affected by pertussis. However, it is most dangerous for babies, as they are at particularly high risk of severe complications, hospitalization and death. About half of babies younger than one year who get the disease need care in the hospital, and 1 out of 100 babies who get treatment in the hospital die. Most unvaccinated children who are living with an infected family member will contract pertussis themselves. There is no real cure for pertussis, only treatments that help address the symptoms.
In the case of Callie Van Tornhout, detailed in the FOX28 news clip out of Indiana, transmission of pertussis from a hospital employee to a vulnerable newborn too young for vaccination proved to be deadly. Callie was only 38 days old and had never been anywhere besides her family home and the hospital. This is why Callie’s mom Katie Van Tornhout is speaking out in support of the proposed Indiana bill (SB 162).
Katie, like the many others who support this bill, believes that hospital employees who have direct contact with patients should take reasonable precautions in order to protect themselves and their patients from preventable diseases like pertussis. That means they should be up-to-date on ACIP recommended vaccines such as Tdap, flu and MMR, that are proven to be safe and effective.
Katie explains, ”If you’re taking care of my child in the hospital and you’re not vaccinated, then what good is that? You’re putting that baby in danger. You’re putting everyone in danger.”
This is a guest post, written by Alicia Stillman, Director of the Emily Stillman Foundation. One of the missions of the Foundation is to raise awareness of meningococcal disease and the various vaccines that are now available to prevent it.
February 2, 2013 my life changed forever. I was told my beautiful and healthy nineteen year old daughter no longer had any brain activity, and that she would die. Those words will forever haunt me. There is no preparation, no training, and no practice for what was to come. The loss of a child is like none other. It is the wrong order. When you lose a child, a piece of you dies as well.
On January 31, 2013 my middle daughter Emily called home from college, and mentioned she had a headache. I thought she was possibly coming down with the flu. She thought it may be from lack of sleep. We decided she would take Motrin and go to bed. Several hours later she woke up to increased pain and was taken to the hospital where she was treated for a migraine. It was not until hours later that the medical professionals realized they may be looking at meningococcal disease, and performed a lumbar puncture to confirm.
The entire two hour drive to the hospital I begged the medical professionals to double check the results. Since I knew my daughter had been vaccinated against meningitis, I did not believe it was possible for her to have that disease. I feared that something else would go untreated, and I wanted them to heal her.
When I arrived at the hospital, Emily was already unconscious as they prepared her for a craniotomy to relieve the swelling in her brain. When the nurse took me to see her, she asked if I wanted them to call clergy. That was the first time I actually realized the seriousness of this disease. I did not understand how this could be happening. My daughter only had a headache. She was vaccinated.
Within 30 hours from the onset of her headache, my daughter was brain dead. Her life was over. We decided Emily would want to be an organ donor. She was able to save five lives with six organs, and countless others with her bones and tissue. She was a hero.
As I said goodbye to my sweet daughter in that hospital bed, I made her a promise. Read more…
How is it that three families, who’ve never actually met one another, find themselves sharing words of consolation and encouragement at the same time each year?
How is it that these three families are forever bonded by their children, and the courage and compassion they have to share their stories?
Carter, Callie and Brady were just infants when they had to say goodbye. But during this week, back in 2010 and 2012, three babies lost their fight to pertussis, (more commonly known as whooping cough) and their families were forever changed.
In 2008, Every Child By Two (ECBT) launched a program called Vaccinate Your Baby, which was inspired in large part by the Romaguera family, who had contacted the organization several years earlier after having lost their baby Gabrielle to pertussis.
In the days and months following the death of Carter, Callie and Brady, the Dube, Van Tornhout and Alcaide families also reached out to Every Child By Two in hopes that they could turn their personal tragedies into a public health mission.
Today, as Every Child By Two Parent Advocates, their commitment to pertussis prevention has undoubtedly helped bring about many positive and live-saving changes. They have not only raised awareness of the importance of adult Tdap boosters, but their efforts have helped alter the way in which the public is advised to protect newborns from pertussis.
Prior to the death of their children, none of these families were educated on the need for adult Tdap boosters. They’ve since devoted a great amount of time to sharing their stories; in media interviews, in state legislative chambers, on podiums at public health conferences, and in blogs and Facebook posts shared widely on social media.
New Recommendations Are Helping in the Fight Against Pertussis
Today, leading professional organizations such as the AAP, the American College of Nurse-Midwives (ACNM) and the American College of Obstetricians and Gynecologists (ACOG), all recommend that pregnant women receive Tdap boosters in the third trimester of each pregnancy. This not only helps to protect the expectant mom from contracting pertussis and passing it onto their newborn, it also provides passive immunity to the unborn baby. This practice helps protect infants before they begin receiving their own pertussis immunizations through a series of five DTaP vaccine doses that begin at two months of age.
Before the DTaP shot was routinely administered to infants, about 8,000 people in the United States died each year from whooping cough. However, thanks to greater immunization coverage and greater public awareness, this number has dropped to fewer than 20 deaths per year. Unfortunately, because the bacteria is still widely circulating in our communities and not everyone is adequately protected, whooping cough still makes people very sick. In 2014, as many as 30,000 people were diagnosed with pertussis and each year many are still hospitalized. The real danger is among children under 12 month of age. About half of these infants who get whooping cough are hospitalized, and tragically approximately 1 out of 100 infants who are hospitalized will die. So how can we better protect these babies?
Research Continues to Guide Vaccine Recommendations
Research indicates that family members are often the source of infection among infants, and most family members are passing on the infection without ever realizing they have pertussis themselves. In one recent study, approximately 85% of infants with pertussis got if from a member of their immediate or extended family. This is why Tdap boosters are now recommended for all family members and caregivers who spend time around babies. In fact, families members should get their Tdap booster at least two weeks prior to the expected arrival of the baby, since it’s estimated that it takes that long to acquire immunity after getting the vaccine.
Most recently, the efforts and experiences of our Every Child By Two Parent Advocates have even helped inspire the expansion of the Vaccinate Your Baby program to the Vaccinate Your Family program. When people of all ages are up-to-date on their recommended vaccines, they’re less likely to pass illness on to our vulnerable infant population.
We encourage everyone to visit the adult section of the Vaccinate Your Family website, where there are several resources that specifically help educate older individuals about the need for adult Tdap boosters, to include materials for grandparents who want to help protect their young grandbabies.
Please familiarize yourself with this Grandparent Toolkit and share these materials among your friends, family and colleagues.
Every Child By Two stands with our Parent Advocates in our mission to ensure that no family should ever have to endure what they’ve been through. This week, as we mark the anniversary of the passing of Carter, Callie and Brady, may we each share this video and the many resources on the Vaccinate Your Family website in an effort to educate the public about pertussis prevention.
As we prepare for the challenges of 2016, we want to thank everyone for a successful 2015. Once again, the past year has been one of tremendous growth. We’ve seen a record number of views and shares on a variety of Shot of Prevention blog posts, and we’re especially grateful to our blog contributors and many new subscribers.
In looking back over our efforts from this past year, we would like to share a list of some of our most popular blog posts from 2015. We hope that you will revisit these posts and share them with others so that we can continue to engage more people in these important immunization discussions.
As the number of measles cases tied to the Disneyland outbreak continued to rise this year, parents grew concerned about possible measles exposure in children who are not yet old enough to receive their first dose of MMR (measles, mumps rubella) vaccine. The CDC recommendation is to administer the first dose of MMR between the ages of 12-15 months. However, this recommendation leaves children under one year of age at risk. We had many parents with young children raising their concerns on our Vaccinate Your Family Facebook page and asking if they could give the vaccine earlier than recommended. In this post, Every Child By Two Scientific Advisory Board Member, Mary Beth Koslap-Petraco, DNP, PNP-BC, CPNP, FAANP provides some insight as to the vaccine recommendations and how parents can help to protect their young children from measles. To learn more, read the article here.
Rebecca’s five-year old daughter Scarlet was one of the 147 children who would die from flu in the 2014-2015 season. Prior to Scarlet’s death, Rebecca thought the flu was no big deal. She didn’t realize that the flu could be dangerous to people of all ages; even those who are otherwise healthy. In this post, Rebecca shares the struggles she has had in facing life without her daughter. She also explains that while Scarlet will always be one of the many faces of the flu, her goal now is to prevent others from suffering the same tragedy that her family has. To hear more about Rebecca’s mission to fight flu, read Scarlet’s story here.
As a pediatrician, Rebecca Bakke MD, FAAP is often asked what she thinks about delaying vaccines, trying an alternate vaccine schedule or forgoing them all together. In this post she shares a very personal experience in which she unknowingly infected her own daughter Claire with pertussis. The coughing started when Claire was just five weeks old and after is was confirmed that Claire had pertussis, Rebecca grew terrified. As a pediatrician, she knew that infants with pertussis are at great risk for complications. She also knew that antibiotic treatment for pertussis only prevents the spread of the disease, but that no medication can alter the disease course after the coughing starts. To read Dr. Bakke’s personal account of pertussis, read the complete story here.
Despite the fact that measles was declared eliminated from the U.S. in 2000, we saw a significant outbreak in the United States in 2015. As the outbreak spread, 2015 saw 189 people suffer with measles in 24 states. People began wondering, “Is measles something I should be worried about?” In order to determine whether we should be concerned, this post addressed the facts about the disease, the vaccines we use to help prevent it, and the way in which measles is spread among various communities and across the nation. The truth is that measles presents a risk to everyone, even the vaccinated. To learn why, read the post here.
Dr. Tim Jacks has a three-year-old daughter Maggie who is fighting acute lymphoblastic leukemia (blood cancer) and as a result has a compromised immune system. At the time this article was published, he also had 10 month old son Eli who had received all his recommended vaccines, but was too young for his first dose of MMR (measles, mumps and rubella) vaccine. Unfortunately, Dr. Jacks’ family was exposed to measles at a Phoenix Children’s Hospital clinic. Frustrated and concerned, he responded by writing an open letter “To the parent of the unvaccinated child who exposed my family to measles.” As the measles outbreak continued to spread throughout the nation, he presented testimony in front of the U.S. Senate Health, Education, Labor and Pensions Committee on The Reemergence of Vaccine-Preventable Disease: Exploring the Public Health Successes and Challenges . To read more about his efforts to educate Congress about the plight of those who depend on herd immunity and the importance of protecting those who are most vulnerable to vaccine preventable diseases, check out his guest post here.
If you have suggestions for topics you would like us to address in 2016, or you would like to contribute a guest post for publication, please feel free to let us know by commenting below or emailing us at firstname.lastname@example.org.
If you want to ensure you don’t miss any of our new posts in 2016, simply subscribe to Shot of Prevention by clicking the link at the top right of this page. You can also “Like” our Vaccinate Your Family Facebook page to receive updates on important immunization news and join in on group discussions.
Thanks again for your continued support and best wishes for a happy and healthy new year!