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Meningitis B and Your College Student: Preventing the Call

February 14, 2018 Leave a 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.

Young Hockey Player’s Death A Flu Warning

January 22, 2018 2 comments

By Amy Pisani, Executive Director of Every Child By Two/Vaccinate Your Family

Each of us has a tipping point; the moment when a news story becomes personal, more impactful and perhaps spurs action.

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Every Child By Two Executive Director, Amy Pisani, with her son Nicholas, a fellow hockey player from CT.

After hearing of the tragic death of 10-year-old Nico Mallozzi, an ice hockey player from a neighboring town who died Sunday from complications related to flu, I immediately reached out to our hockey league president to ask him to urge our teams to implement the same flu protocol that Nico’s team is now doing: Stay home if you have symptoms of influenza, don’t share water bottles and shake hands post game with gloves on. Thursday evening our league distributed Nico Mallozzi # 7 memorial stickers for every player’s helmet.

According to friends and family writing online, Nico was a sweet, happy, healthy child from New Canaan, CT. He had traveled to upstate New York to cheer on his team during a hockey tournament in which he did not participate because he was feeling sick.  Nico was hospitalized on his way home and died the same day, reportedly from influenza and its complications.

As the executive director of Every Child By Two, a national non-profit organization whose mission is to ensure that all families are protected from vaccine-preventable diseases, it saddens me to learn of yet another family suffering the devastating loss of a child. As a fellow hockey mom, this tragedy resonates deeply.  Anyone with a child on a team knows that hockey families are a tight group. From fall to early spring, we travel the region at all hours of the day and night in support of our children. We cherish our children’s teammates, who we watch grow up from wobbly “learn to skaters” to dedicated players who often commit five or six days a week to practice and playing games, building lifelong friendships.

Nico’s tragic death is a poignant reminder that children of any age, even those who are healthy and athletic, can be taken by flu in a heartbeat. 

Each year, the Centers for Disease Control and Prevention warns us that approximately 100 children will die from influenza every season. Sadly, as of last week, here in the U.S. there have already been 30 children who died from flu so far this season, and this number will continue to climb, as we are nowhere near the end of this outbreak. Unfortunately, these kinds of statistics don’t always resonate with the public and as a result, health advocates are challenged to find ways to spur families to take the time to vaccinate everyone 6 months and older against flu each and every year.

To make matters worse, there are mixed messages about the effectiveness of influenza vaccines and getting across the idea that some protection from the vaccine is better than none is often difficult. As with any infectious disease, community prevention is of paramount importance. Since no vaccine is 100 percent effective and not everyone is able to be vaccinated due to age or underlying medical conditions, we must provide a barrier around one another to keep diseases from taking the lives of children like Nico.

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It’s not too late to get a flu shot for yourself and your family.

While the peak of flu activity varies from year to year, it often occurs between December and February, and can last as long as until May. Although 12,000 to 56,000 people die each season, influenza vaccination has been shown to reduce the risk of flu-associated death by 65 percent among healthy children and by 51 percent among children with underlying high-risk medical conditions. Other research indicates that adults benefit from repeated flu vaccination year after year. The study found flu vaccination was 74 percent effective in preventing intensive care unit admissions in older individuals and 70 percent effective in preventing deaths among older adults.

These statistics matter and they all say the same thing; protect your entire family from flu by getting vaccinated against this potentially deadly disease every year.

For more information on this year’s flu season, visit:

 


This editorial was originally published in the Hartford Courant.

 

Is This Season’s Flu More Severe Than Usual or Just Highly Active?

January 13, 2018 10 comments

At this point in the flu season people often wonder if all the media hype is part of an orchestrated effort to panic people about flu, or if it is really signaling serious concern.

There are lots of flu stories in the news these days.  From reports of  74 Californian’s who’ve died from flu – five times the number seen at this point last year – to 13 school districts in TX closing due to the high number of flu cases among students, we’re left to wonder….

Is this year’s flu season more severe than usual or just highly active at the moment?

A recent CDC media briefing has helped clarify the following concerns regarding the latest flu activity in the U.S.: 

Right now, flu is widespread everywhere.  

One of the most notable differences between this season and others is in relation to the geographic spread of flu. This is the first time over the course of 13 years of surveillance data that the entire nation is experiencing widespread flu at the exact same time, as can be noted by the color of CDC’s flu surveillance map below.

FluWeeklyReportActivity is severe right now.

 

One of the ways the CDC tracks influenza activity is to record the number of lab confirmed cases of flu and hospitalizations by week. What they’ve noted is a very rapid increase in the number of people seeing their healthcare providers for flu diagnosis, along with a rapid rise in the numbers of people being hospitalized with lab confirmed flu. For instance, this week’s surveillance data indicates that there’s been 22.7 hospitalizations per 100,000 people in the U.S., which is up considerably from the 13.7 number recorded last week.

So far this season, influenza A (H3N2), has been the most prevalent strain in circulation. Unfortunately, historically it is often the strain linked to more severe illness, especially among children and older individuals above the age of 65. Interestingly enough, the current flu surveillance observations seem to be in line with two more previous H3N2 dominant seasons; the 2014-2015 and 2012-2013 seasons.WHOPHL02_small

Additionally the hospitalizations so far this season seem to be in line with other H3N2 predominant seasons, with the highest rates among those over the age of 65, those between 50-64, and children under 5 years of age.

Flu can cause mild disease in some, but severe disease and death in others.

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Sadly, there have been as many as 30 pediatric deaths so far this season. While children are at great risk, there are plenty of reports of otherwise healthy adults who have been hospitalized or died from flu this season.

Peak season may have started early, but there are many more weeks to go.

Speaking to the media on behalf of the CDC on Friday, Dr.  Jernigan explained,

“If we look at the timing of the season, even if we have hit the top of the curve or the peak of the seasonal activity, it still means we have a lot more flu to go.”

He went on to suggest that there will likely be at least 11 to 13 more weeks of elevated influenza activity this season, before activity begins to subside. Even though it can take about two weeks for protection from vaccination to set in, Dr. Jernigan explained that we still have a lot of flu season to get through and that vaccination efforts should continue as long as influenza viruses are circulating.

While we are seeing a lot of H3N2 circulating now, we are also seeing H1N1 show up in states that have already had H3N2 activity. And we know that B viruses also tend to show up later in the season. Each of these strains are covered in the vaccine, so flu vaccination now can still help to prevent, or lessen the severity of flu throughout the remainder of the season.

Vaccination is our best defense.  

While flu vaccination is far from perfect, it remains our best defense. Not only can it help prevent flu, but it can also help lessen the severity of symptoms if a vaccinated person does end up getting infected.  This can reduce the chances of an individual being hospitalized or dying from flu.

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In fact, a recent study showed that influenza vaccination reduced the risk of flu-associated death by 65% among healthy children and by 51% among children with underlying high-risk medical conditions. Another study indicated that many older adults benefit from repeated flu vaccination. When getting vaccinated in both the current and previous seasons, the study found flu vaccination was 74% effective in preventing ICU admissions in older individuals and 70% effective in preventing deaths among older adults.

Manufacturers are reporting that they’ve shipped more than 151 million doses of flu vaccine this season, so there shouldn’t be a problem finding a flu vaccine in your area.  Simply refer to the flu vaccine finder for assistance.

We won’t know preliminary flu vaccine effectiveness until February.  

Read more…

What Signals the Start of Flu Season?

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One might think that flu season starts with the arrival of vaccine in the local pharmacy or provider’s office.  Others might believe that flu season in the U.S. begins with the first case of lab verified flu.  While flu viruses are most common during the fall and winter months,  influenza activity can begin as early as September or October and last as late as May.

The CDC monitors certain key flu indicators (like outpatient visits of influenza-like illness, lab results and reports of flu hospitalizations and deaths). When these indicators rise and remain elevated for a number of consecutive weeks, than “flu season” is said to have begun.

In preparation for flu season, the Centers for Disease Control and Prevention (CDC) and the National Foundation for Infectious Diseases (NFID) kick off their annual flu vaccine campaign each September with a special press conference which emphasizes the importance of flu vaccination.

The reality is that influenza is difficult to predict. No one knows when it will peak, how many people will suffer or die, or even how effective the flu vaccine will be.

However, what experts do know is that the flu is inevitable, yet preventable.  Every year there is suffering, hospitalizations and even deaths, but much of that could be prevented if more people were protected through annual vaccination.  2017 Flu News LBE

 

Flu is a fickle and unpredictable virus. 

This was the message Dr. Bill Schaffner delivered during the news conference last week.  Since 2010, flu-related hospitalizations in the U.S. typically range from 140,000 to 710,000 each year, killing between 12,000 and 56,000 people each year.  While the exact number may differ drastically from year to year, this just highlights how dangerous and unpredictable influenza is.

Now is the ideal time to get a flu shot. You want to be vaccinated weeks before possible exposure, because it can take about two weeks post-vaccination for your body to build the proper immune response from the vaccine.

Everyone should consider flu vaccination – even healthy individuals.

Flu Fact of the Week

The flu vaccine is recommended for everyone 6 months and older.  It not only helps to reduce the risk of flu illness and serious complications for the person getting vaccinated, but it also helps to reduce the amount of flu circulating in the community.  By reducing the incidence of flu, we can help protect those who might be more susceptible to serious flu illness, such as young infants too young to get vaccinated, pregnant women and older individuals who may be more susceptible to flu infection, and individuals with certain medical conditions, like heart disease, asthma and diabetes, who are at increased risk of complications from flu.

Too often people mistakenly believe that if they are healthy they don’t need a flu vaccine.  Or, they don’t realize how dangerous the flu can be and consider it akin to a bad cold.  However, influenza is a contagious respiratory illness with no cure.  Once the virus takes hold, all we can do is treat the symptoms.  While antiviral drugs are recommended to try to lessen symptoms and shorten the time one is stick by a day or two, the reality is that influenza must run it’s course.  This is why Dr. Northrop could do nothing but watch while his otherwise healthy adult sister succumbed to influenza and died.

Why choose vaccination if it can’t guarantee you won’t get flu?  

We often hear people explain that they won’t get a flu shot because it doesn’t guarantee that they won’t get the flu.  While it is true that the flu vaccine isn’t a 100% guarantee, the annual flu vaccine is  typcially about 40-60% effective.  Therefore, getting your annual flu vaccine means you will reduce your chances of getting the flu by 40% to 60% as compared to someone who does not get vaccinated. It also means that flu vaccination can significantly reduce the risk of flu-associated hospitalization and death (especially among children and older adults).

As an example, last year’s flu vaccine effectiveness was deemed to be approximately 42% effective overall.  While that may not sound overly impressive, it is estimated that flu vaccination last year prevented about 5.4 million cases, 2.7 million flu-related doctor’s visits and 86,000 hospitalizations last season.  But last year only about 46.8% of the U.S. population 6 months and older received a flu vaccine. Now imagine if more people had been vaccinated. The CDC estimates that if overall flu vaccination coverage had been just 5 percentage points higher, another 490,000 illnesses and 7,000 hospitalizations could have been prevented.

What determines flu vaccine effectiveness?  

Read more…

Updates from June 2017 Meeting of the Advisory Committee on Immunization Practices

July 13, 2017 2 comments

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Recently, the Advisory Committee on Immunization Practices (ACIP) met to discuss several important developments concerning vaccines. As you may be aware, this impartial group of experts advises the U.S. Centers for Disease Control and Prevention (CDC) on all matters related to vaccine recommendations. In the coming years, the ability of the CDC and public health departments to implement the recommendations of this group may be under threat from proposed provisions within the health care reform bills and congressional budget cuts.

The activities of the ACIP are supported by staff at the CDC, which receives annual appropriations from the federal government to fulfill its duties.  This federal immunization funding is at risk of being drastically cut if the Prevention and Public Health Fund (PPHF) is eliminated. (Click here to see a breakdown of the impact of the elimination of the PPHF funds by state.) If Congress follows the recommendation of the President, funding will be reduced by another 14% beginning in Fiscal Year (FY) 2018.

The result is that CDC may no longer be able to fully support its immunization functions including:

  • ACIP staffing;
  • Vaccine purchase and supply management;
  • Vaccine safety monitoring;
  • Education initiatives;
  • Disease surveillance;
  • Outbreak response; and
  • Funding support for state, territory, and city immunization programs.

An example of the critical activities conducted by the CDC includes support for the ACIP.  This committee of experts from diverse fields such as vaccinology, immunology, pediatrics, internal medicine, nursing, family medicine, virology, public health, infectious diseases, and\preventive medicine meets three times a year to review and discuss vaccine research and scientific data related to vaccine effectiveness and safety, clinical trial results, outbreaks of vaccine-preventable disease or changes in vaccine supply.

There are 15 voting members, 8 ex officio members who represent other federal agencies with responsibility for immunization programs in the United States, and 30 non-voting representatives of liaison organizations that bring related immunization expertise. All members volunteer their time and come from many leading professional and public organizations such as the American Academy of Pediatrics, the National Foundation for Infectious Diseases, and the American Geriatrics Society. This is the only meeting to gather such a comprehensive group of experts whose aim it is to protect individual and public health.

The current health care reform discussions that are happening in Congress may have a direct impact on this Committee. Please continue to reach out to your Representatives and Senators to let them know the importance of keeping PPHF and CDC fully funded. (You can find your Members of Congress at http://whoismyrepresentative.com/ and some suggestive language to share here.) 

The value of the ACIP can not be overstated. During their most recent committee meeting in June, members discussed several important issues recapped in the summary below.

Read more…

101 Empty Chairs

June 23, 2017 1 comment

By Serese Marotta, Chief Operating Officer, Families Fighting Flu

Sadly, the Centers for Disease Control and Prevention (CDC) have reported that the 2016/2017 flu season has now claimed the lives of more than 100 children. 101 to be exact.  This statistic is hauntingly familiar – three of the past five flu seasons also claimed the lives of more than 100 children.

101 Pediatric Flu Deaths

Sometimes we forget what these numbers really mean.

It means that 101 families had to bury their beloved children; 101 families have to listen to the deafening sound of silence left by their lost loved ones; and 101 families now have empty chairs at their dinner tables every night.

I paint this picture because I know how these families feel. They’re probably thinking the same thing I did after my son died from the flu – how did this happen and what could I have done to prevent it? 

Unfortunately, unless flu has personally touched your family like it has mine, chances are you’re not all that worried about flu.  You may even think it’s just a bad cold. Well, as the mother of a child who lost her five-year old son to flu, I’m here to tell you, “Not so“.

According to the CDC, flu kills more Americans every year – up to 56,000 people – than any other vaccine-preventable disease.  Since 2004, when the CDC started reporting pediatric flu deaths, 1,466 children – many of whom were otherwise healthy – have lost their lives to flu.

Flu is that infectious disease that seems to fly under the radar. While everyone is focused on the latest outbreak of measles, mumps, pertussis or meningitis, flu is that one disease that we know we will have an outbreak of each and every year.  As prevalent as flu is, it still manages to creep up like a quiet thief in the night, stealing our loved ones right out from under our noses.  And yet when it does, we wonder why we never saw it coming.  Flu has killed millions of people worldwide – and it will continue to do so for the foreseeable future.

So what can we do to protect ourselves and our loved ones from influenza each year?  Annual vaccination.

Studies show that flu vaccination can reduce the likelihood of death and hospitalization from flu in people of all ages.  Yet, less than half of Americans get their annual flu vaccine.   Read more…

What Parents of Every Teen Should Know About Meningitis

The most important thing parents of teens need to know about meningococcal disease is that it can be very serious.  And by serious, we mean debilitating and often deadly.

Even with prompt medical treatment, about 1 in 10 people with meningococcal disease will die from it. Of those who survive, about 1 to 2 will have permanent disabilities such as brain damage, hearing loss, loss of kidney function or limb amputations.

The best thing parents can do to protect their children from meningococcal disease is to get them vaccinated against all of the preventable forms of the disease.

 What causes meningitis and meningococcal disease?

Meningitis refers to a swelling of the protective membranes that cover the brain and spinal cord.   While meningitis is commonly caused by a bacterial or viral infection, it can also be caused by injuries, cancer, certain drugs, and other types of infections.

Meningococcal disease is specific to any illness caused by the bacterium Neisseria meningitidis (also referred to as meningococcus or meningococcal meningitis).  These types of infections can cause meningitis, but can also cause bloodstream infections (known as bacteremia or septicemia).

It’s possible to have meningitis without having meningococcal disease, and it’s possibly to have a type of meningococcal disease that isn’t necessarily meningitis.  The specific cause of illness is important to identify because the treatment differs depending on the cause.

  • Bacterial forms of meningitis can be extremely dangerous and fast-moving and have the greatest potential for being fatal. The long-term effects of bacterial meningitis can include multiple amputations, hearing loss and kidney damage. Many, but not all, forms of bacterial meningitis can be prevented by vaccination.
  • Viral meningitis has similar symptoms to bacterial meningitis, but for the most part is neither as deadly nor as debilitating. There is no specific treatment available for viral meningitis, but most patients fully recover over time.
Meningococcal Disease Facts

Who is at risk?

Read more…