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Meningitis B and Your College Student: Preventing the Call

February 14, 2018 1 comment

Emily was a 19-year-old college student when she called home complaining of a headache. Thirty-six hours later, she passed away due to serogroup B meningococcal disease. Emily was able to donate six of her organs, together with bones and tissue, to save the lives of five others.

Emily’s mother, Alicia Stillman, who graduated from Arizona State University, returned to Arizona after founding The Emily Stillman Foundation to honor her late daughter’s life. She shared the story of how Emily contracted Meningitis B and her family decision to donate Emily’s organs. She also explained the work she is doing to help educate others about the availability of Meningitis B vaccines in the United States and to encourage organ donation. She spoke with Debbie McCune Davis, Director of The Arizona Partnership for Immunization (TAPI), who is leading the effort to increase awareness of the approved vaccine and who is working with Arizona Universities to promote the Off to College education campaign.

Together these two women share a message of hope, as they work to save lives and prevent serogroup B meningococcal disease by educating parents, students, educators and medical professionals across Arizona and the nation.

 

 

Alicia: I always felt I was living a blessed life. I enjoyed motherhood. I had three beautiful children, a wonderful husband, and a successful career. I believed I was doing everything right to raise healthy, independent children, as I sent each one off to college.

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Emily and the Stillman family after her high school graduation.

My middle daughter Emily had a fabulous first year away at a small liberal arts college in Kalamazoo, Michigan. In 2013, she was well into the second semester of her sophomore year when she called home one evening, complaining of a headache. Thinking it was from lack of sleep, I advised her to take some ibuprofen, and to touch base with me in the morning. Little did I know that was to be the last time I would ever hear my Emily’s voice.

The call the next morning wouldn’t come from my Emily, but rather from the Dean of the College. She told me my daughter had been admitted to the hospital during the night with Bacterial Meningitis, that she was very sick, and I needed to get there as soon as possible. I remember insisting that this was not possible because even at that time, I knew she had received “the meningitis shot”. In fact, I even remembered that before she left for college, she had received a meningitis booster. What I did not yet know at that time was that the vaccine she had received (MenACWY) only protected her against 4 of the 5 common serogroups of Meningococcal Disease. I had no idea that there was a strain she was not protected against because a vaccine for that strain was not even available in the United States at that time.

Less than 36 hours later I said goodbye to my baby. My beautiful girl that I had promised to always protect and take care of was gone. As I said goodbye to her on that cold February morning, I told her that I would be ok…and that I would figure this out.  I would make sure this could not happen to other people.

Debbie: Stories like Alicia’s weren’t preventable in the U.S. when Emily Stillman contracted and lost her life to Meningitis B, but they are today. In October of 2014 and January of 2015, the FDA approved licensing for two different vaccinations for Meningitis B. Soon after that, the Advisory Committee on Immunization Practices (ACIP) of the Center for Disease Control and Prevention (CDC) acknowledged that college age students should talk with their doctors about Meningitis B.

In Arizona, our Board of Regents (the governing board of our state university system) took quick action to recommend all incoming freshmen get the vaccine.  There had been outbreaks in the PAC 12 schools and Arizona wanted to promote healthy campuses. We, at TAPI, worked with the Universities, their Medical Directors and all of our professional medical organizations including Osteopaths, Pharmacists, Nurses, and Pediatricians to put forth a unified message and raise awareness.

Our Off to College flyer launched an awareness campaign for parents and college age students to make certain each has the benefit of protection from all strains of meningitis.

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Alicia: I live my promise to my Emily every single day with my work at The Emily Stillman Foundation. Before the vaccine was approved in the U.S., I discovered the vaccine was available in Canada. We took busloads of families across the Detroit/Windsor border into Canada to get the MenB vaccine. We met with the FDA (Food and Drug Administration) and many members of Congress to urge the fast tracking of the licensing process. I testified at the CDC and encouraged ACIP to grant a firm recommendation to protect our adolescents and young adults. I set up vaccination clinics locally to provide the vaccine before medical practices were willing to hear about it. I speak nationally, working with colleges, medical practices, and parents to raise awareness to this hideous disease, its symptoms, and the vaccinations now available to prevent it.

I won’t stop until the MenB vaccine is on the required list, and is available to all people.  Only then will my promise to my Emily be fulfilled. 

Debbie: Today, we at TAPI are taking it a step further…we don’t want kids to wait until they’ve moved into their dorms to receive their vaccination. 

We are working with high schools, parents groups, physicians, athletic departments and more to promote Vaccinate Before You Graduate here in Arizona.  We want this to become part of the college prep routine—take your college entrance exams, turn in your transcripts, apply for scholarships, choose your school, order your cap and gown and vaccinate!

 

As mothers, and as experts – one from a heart-breaking loss, and one as a professional who works tirelessly to prevent disease – we urge you to enjoy these moments with your child.  However, as you are giving them that final send off, smoothing the bedding on their dorm bunk, stocking snacks and toiletries, telling them to study hard and have fun (but not too much fun), asking them to be safe, be sure to also give them the tools to stay healthy.

Make sure they have their boosters, that they are up to date on all vaccination and be sure your health professional has given your child protection from all strains of meningitis, including Meningitis B. If your child has already started that journey and is off to college, check with the student health services at their school for information about vaccine availability on campus.

Do it for your child, do it for yourself and do it for Emily.


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Alicia Stillman lives in West Bloomfield, Michigan with her husband of 29 years, Michael. In addition to her angel daughter Emily, she has two live children – Karly, 25, and Zachary, 21. Alicia holds an MBA in Management Accounting, and is the Accounting Director for a multi-state Law Firm. She is the Co-Founder and Director of The Emily Stillman Foundation, founded in 2014 in memory of her late daughter Emily. The Foundation has a trifold mission to raise awareness for and encourage organ and tissue donation, to educate about Meningococcal Disease as well as all vaccine preventable diseases, and to advocate globally for all health and wellness issues. Most recently, Alicia partnered with Patti Wukovits to co-found the Meningitis B Action Project.  Alicia can be reached through the Foundation at emilystillmanfoundation@gmail.com.

 

McCune_Davis_16 - Member Photo.jpgDebbie McCune Davis has served as Director for The Arizona Partnership for Immunization, better known as TAPI, since February 1996. She was an elected member of the Arizona Legislature, serving from 1979 until 1994 and again from January 2003 until her retirement in January 2017, serving in both the House of Representatives and the Arizona State Senate. In her local community Debbie serves on numerous committees and task forces, working to improve the health status of women and children in Arizona. She has established a reputation for being a knowledgeable advocate for maternal and child health and childcare issues. In 2012 she was recognized for her advocacy by the Children’s Action Alliance in Phoenix and Every Child By Two in Washington, DC. Debbie also served on the Board of Directors of the American Immunization Registry Association and she volunteers her time as a member of the planning committee of the National Conference on Immunization and Health Coalitions. She is married to Glenn Davis and has a blended family of 5 children and 3 grandchildren. More information about TAPI may be found at www.whyimmunize.org.

I Want Parents to Know About the Additional Meningococcal Vaccine That Could Have Saved My Daughter

August 25, 2016 1 comment
This guest post has been written by Patti Wukovits, a Registered Nurse and Executive Director of The Kimberly Coffey Foundation, as part of National Immunization Awareness Month’s week-long focus on the importance of preteen and teen vaccination.

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As a mother and a nurse, I was vigilant in having both of my children up-to-date on all recommended vaccinations, including meningococcal vaccination. I was under the common misconception, as many parents are, that the meningococcal vaccine that my daughter received would fully protect her from meningococcal disease, when in fact, it didn’t protect her against meningitis B. The meningococcal vaccine (MCV4) only protects against four of the five common groups (ACWY), leaving adolescents and young adults vulnerable to meningitis B. Meningitis B is a type of bacterial meningitis, also known as meningococcal disease, which is a potentially fatal bacterial infection that can kill a healthy person within 24 hours.KimberlyCoffey

When my daughter Kimberly Coffey died in 2012 from bacterial meningitis, a vaccine was not available to protect her. But since 2014, meningitis B vaccination has been available in the United States. Kimberly was a perfectly healthy 17-year-old high school senior, and I believe she would be alive today if meningitis B vaccination had been available to her.

I established The Kimberly Coffey Foundation in Kimberly’s honor to educate other parents and health care providers about meningitis B, also known as MenB.

It’s critical that parents know that MenB vaccination is now available, and that without requesting MenB vaccination in addition to the common meningococcal vaccine (MCV4), their child will not be fully protected against meningococcal disease and MenB.

The Kimberly Coffey Foundation has partnered with Pfizer on the National Meningococcal Disease Awareness Survey to gain a better understanding of parents’ knowledge of meningococcal disease and its available vaccines.  This 2016 survey revealed that nearly 4 out of 5 parents didn’t know their child wasn’t fully immunized against the five common groups of meningococcal disease unless they had two meningococcal vaccines (MCV4 and MenB).

The bottom line is this – without adding MenB vaccination, we are going to lose more lives. There will continue to be more college outbreaks, especially since MenB has been responsible for several recent college outbreaks in the United States.  According to data released by the CDC, MenB currently accounts for approximately 50% of meningococcal disease in the United States among persons aged 17-22 years old. MenB vaccination is available for individuals ages 10-25, and public health insurance and most private insurance plans provide coverage.  However, your child’s provider may not mention it.

I want parents to have the knowledge to request MenB vaccination, in addition to the meningococcal vaccine, so that their children can potentially be fully protected against this devastating disease.

As a mother who lives every day with the heartache of not seeing my beautiful daughter live the full life she deserved, I know only too well how important MenB vaccination is. My daughter Kimberly’s life was one too many lost to this terrible disease.

KimberlyCoffeyFoundationLogoI will be Kimberly’s voice as I continue to promote awareness of meningococcal disease, which includes MenB. I don’t ever want another parent to experience what I have. And more important, I don’t want another person to experience what Kimberly did when she battled for her life.

Kimberly contracted MenB two years too early—two years before the MenB vaccine was made available.  She didn’t have the protection of the MenB vaccination, but your children can. Please protect your children – because YOU can.

 

For more information about meningitis B and the MenB vaccine, please visit the Kimberly Coffey Foundation at www.kimberlycoffeyfoundation.org.

 


Every Child By Two (host of the Shot of Prevention blog) welcomes guest blog posts on a variety of vaccine related issues.  The views and opinions expressed in these guest posts do not necessarily represent the views of the Every Child By Two organization.