#NMAInAction at the Statehouse

24 Jul

How and Why Advocates Work for Policy Change

There are many ways that M.O.M.s and T.E.A.M. members work to fulfill NMA’s mission to protect families from the potentially devastating effects of meningococcal disease by educating the public, medical professionals and others about the disease and its prevention.

A few NMA M.O.M.s and T.E.A.M. members focus their efforts on supporting the implementation of meningococcal vaccination and education policies in their states.

When NMA was founded in 2002 there weren’t even routine recommendations for meningococcal vaccination, let alone any state-based requirements. However, in the past five months alone, three states passed bills related to meningococcal disease vaccination. That brings the current total of states that require vaccination or education about meningococcal disease to 43.

Vaccination Requirements State by

These requirements can make a big impact. Sometimes people don’t make prevention a priority. They may believe they’re young and healthy and don’t think that something like this couldn’t happen to them. Sometimes teens are busy and they simply forget. Studies have shown that the states with the highest meningococcal vaccination rates tend to have one or more vaccination requirements for school entry.

We asked a few advocates who helped successfully bring meningococcal disease prevention polices to their home state to share their experiences. Their responses reflected how difficult and rewarding influencing policy can be.

One thing that was universal is that advocates take on this challenge to save lives:

“It’s amazing to feel like I did something that encourages the safety of children in my state.” – T.E.A.M. Member Samantha Bennett

“Knowing that this bill could save lives and save a family from going through our pain is all the motivation that I needed.” – M.O.M. Cindy Krejny

“Rob should not have died, but I couldn’t save Rob so I said I’m going to attack this disease that took his life and I’m going to focus on prevention. What’s going to make a lawmaker listen is your story. That story will get the point across, it takes small steps.” – M.O.M. Jeri Acosta

However they also told us that getting a bill passed can take a lot of patience and hard work:

“Over 10 years ago I testified for the first bill, which was a [vaccination] bill but got shot down to an education bill. The second time the new bill passed through the Senate and got stalled in the House Heath Committee and time ran out. This bill which I also testified on was just passed through and signed by the governor on Thursday, July 16, 2015. Be persistent.”  – M.O.M. Cindy

“I couldn’t have done it alone, before you testify you want to make enough noise to get it [the bill] assigned to a committee.” —M.O.M. Jeri

“I kept motivated by constantly keeping in touch. Even if it was just writing something on Twitter and using hashtags. I kept in touch with everyone I knew was a part of passing a bill in my state. I never said “no” to an invitation to any events. I made sure I was available and ready to go.” – T.E.A.M. member Samantha

And that sometimes when it’s over, the feeling can be bittersweet:

“When Arizona became the first state to mandate the meningococcal vaccine, I was elated but also sad.  I knew other families would not lose their precious children to this terrible disease but that it was due to the loss of my special son.”  – M.O.M. and NMA Board Member Leslie Maier

We’ve come a long way. Thanks to the work of advocates like Cindy, Jeri, Leslie and Samantha, many more preteens and teens will be protected from this terrible disease. Of course there’s still more work to be done and if their stories inspire you we encourage you to contact your representatives!

New Vaccination Recommendations for Serogroup B Meningococcal Disease!

24 Jun

Earlier today, the Centers for Disease Control and Prevention’s (CDC) Advisory Committee on Immunization Practices (ACIP) voted for permissive use of serogroup B meningococcal vaccine for older teens and young adults (full language below).

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 B vaccination is 16 through 18 years of age.

What Does This Mean?
Until now, the meningococcal vaccine recommended for routine vaccination only protected against four of five major strains of the disease (A, C, W and Y). Today’s recommendation is critical because, if accepted by CDC, it allows those 16 to 18 to decide, in collaboration with their parents and healthcare professionals, if they wish to be immunized against the fifth serogroup (B), which is currently the most common cause of disease in this age range. It will also ensure the meningitis B vaccines are covered by public and private insurance and medical practices will be more likely to stock and administer them.

What Happens Now?
It is important to know that this recommendation is for a new and different vaccination than the routinely recommended one your teen may already have received:

  • If your child has not received any meningococcal vaccines, he or she should get the recommended vaccine to protect against A, C, W and Y at age 11-12 with a booster at 16. When your child goes to get the booster, ask about the B vaccine.
  • If your teen received at least one A, C, W and Y meningococcal vaccine, you should make sure he or she goes back for the booster at age 16 and ask about the B vaccine for ages 16 to 23.
  • If your teen is up-to-date on meningococcal vaccines (including the booster), call your healthcare provider and ask about the B vaccine.

(Note, depending on which vaccine your provider uses, the serogroup B vaccination may be a two or three dose series.)

Please help spread the word about the need for vaccination against all serogroups of meningitis. Educating parents, teens and young adults, healthcare providers and college administrators about available vaccination options is extremely important.

Why Did We Need a Recommendation to #BVaccinated?
Though rare, meningococcal disease affects persons of all ages in the U.S. and is potentially deadly. Serogroup B accounts for one-third of U.S. cases, and is the most common cause of disease in adolescents. From 2013 to 2015 alone, four college campuses experienced outbreaks of serogroup B meningococcal disease. There were also many isolated cases.

However, numbers can’t tell the whole story and we’re grateful for the many advocates who shared their personal stories to help put a face to this disease. Here are some samples of what NMA’s M.O.M. and T.E.A.M. members said or submitted to the ACIP today:

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In addition, about 1,240 people representing all 50 states signed NMA’s open letter to ACIP supporting broad serogroup B vaccination recommendations. We were overwhelmed by the responses from healthcare professionals, college health professionals, parents, college students, individuals touched by this disease and others who support prevention. We received more than 500 comments, which you can read here.

This recommendation is an important step forward; let’s use it to make sure all teens are A, C, W, Y and #BVaccinated.

Take Action to Make Sure Teens are #BVaccinated

10 Jun

On June 24th, the CDC’s Advisory Committee on Immunization Practices (ACIP) will be meeting to discuss recommendations for the serogroup B meningococcal vaccines which recently became available in the U.S.

In February, they voted to recommend the meningitis B vaccine for a limited number of sub-populations at increased risk. While that was a step forward, NMA hopes ACIP will vote for recommendations to protect all adolescents and college students.

We hope you’ve been following along as we’ve discussed why this recommendation is so important (if not, you can catch up here), and that we’ve inspired you to take action.

ACIP accepts written testimony for review when considering its vote and NMA has developed an open letter to the committee (below) on which we would welcome your support.

Let’s make sure no one else has to experience the devastating impact of this disease!

WMD_FacebookCover


June 24, 2015

Members of the Advisory Committee on Immunization Practices:

For young adults, the future is full of hope and infinite possibilities. Meningococcal disease shouldn’t be one of them.

We are writing to you because we or someone we know has been touched by this disease, or because we recognize the terrible impact this disease has on those affected (individual comments are attached). Those of us who were affected by serogroup B disease did not have the opportunity to protect ourselves or our loved ones.

This disease can strike so quickly and can be indescribably devastating. One day someone is healthy and then the next day he’s fighting for his life. You’ve heard from many people who have lost loved ones or who have survived but will be dealing with the impact of the illness for the rest of their lives. There are many more whose stories haven’t been told. In recent years it has also become clear how even one case in a college setting has major repercussions as many colleges have had to deal with cases and even outbreaks of serogroup B on campus. Prevention is critical.

The majority of people want to protect themselves and their children from meningitis; nearly 80% of U.S. teens receive their first dose of quadrivalent meningococcal conjugate vaccine. But that is not enough. Many people think that they or their children are fully protected by the currently recommended meningococcal vaccines. Others are asking their doctors for the B vaccine and are being told that it is not available or are having difficulty getting it.

Now that meningitis B vaccines are available, we urge you to do the right thing. We urge you to recommend routine vaccination against serogroup B meningococcal disease, making it easy for all of us to protect our teens.

Thank you,

Click here to sign on and show your support.


This post is part of the #BVaccinated series based on NMA’s report, Beyond the Science: Putting a Face on Meningococcal Disease. As national policy regarding serogroup B meningococcal vaccination is discussed and implemented, NMA urges all those involved to consider these perspectives. We believe that routinely vaccinating our children against this disease is the right thing to do.

 

Teens Need BOTH Vaccines

8 Jun

“I knew he needed a meningococcal vaccine before going to college and so we made sure he had it. I had no idea as a layperson that there was a strain [serogroup B] that wasn’t included in the vaccine. I didn’t think he was at risk because we did the right thing—we got him vaccinated.” —Debbie, mother of a survivor of a college outbreak at age 19

“When Kim got sick, I didn’t think she could have meningitis because she was vaccinated. Even when she started to get the meningococcal rash, my oncology nurse training made me think first that she must have some kind of blood cancer, not meningitis. But Kim had meningococcal serogroup B, which was not covered by the vaccine.” —Patti Wukovits, RN, mother of Kimberly, died at age 17

“She called me that day and said, ‘Mom, my headache hurts so bad. My neck hurts. My body hurts like a truck ran over me.’ And I said, ‘Well Cait, you—honey—you can’t get meningitis, you’ve had your vaccine.’ I—I was so sure of it. I didn’t know. They don’t tell you that the vaccine doesn’t protect against serogroup B.” —Eilleen Boyle, mother of Caitlin, died at age 19

The majority of U.S. parents get their children vaccinated with the quadrivalent meningococcal vaccine against serogroups A, C, W and Y (nearly 80% of U.S. teens receive their first dose). This vaccine is currently recommended by the Centers for Disease Control and Prevention (CDC) at age 11-12 and again at 16.

Participants at the NMA roundtable noted that they believed this meant their children were no longer at risk of meningococcal disease. It’s something I hear from parents over and over again. They didn’t know about serogroup B.

BOTH Visual

Teens need BOTH vaccines and we know that a doctor’s recommendation is the best way to make sure that they get them. Yet, without a routine recommendation the message healthcare providers will have to give to patients is “the CDC recommends that your child be vaccinated against meningococcal disease, but this vaccine won’t protect against all strains of the disease. There is an additional vaccine that protects against the strain most common in adolescents. It’s not recommended, but your child can get it if you want.” This is an extremely complicated message for healthcare professionals to deliver. And more importantly, it’s a hard message for a parent to hear and understand.

We can’t expect parents to know that their children are not protected against serogroup B and we can’t expect healthcare providers to act without strong guidance from the CDC’s Advisory Committee on Immunization Practices.

That’s why we hope that on June 24th, the Committee will do the right thing and vote for a recommendation for teens to #BVaccinated.


This post is part of the #BVaccinated series based on NMA’s report, Beyond the Science: Putting a Face on Meningococcal Disease. As national policy regarding serogroup B meningococcal vaccination is discussed and implemented, NMA urges all those involved to consider these perspectives. We believe that routinely vaccinating our children against this disease is the right thing to do.

B Vaccination before Orientation

20 May

Every case of meningococcal disease is a tragedy, but when a case happens on a college campus, it causes even greater anxiety.

Many of these cases can be prevented by having students vaccinated against meningococcal serogroups A, C, W and Y on schedule at 11-12 with a booster at age 16. But this won’t stop cases of serogroup B.

Four outbreaks and at least 10 isolated cases of serogroup B meningococcal disease have occurred on college campuses since 2013. To get a sense of the true impact of those numbers, here are some first-hand accounts from administrators whose schools were affected:

Mary Ferris, MD, MA, MSEd, Student Health Director at the University of California, Santa Barbara:

(Four cases of serogroup B meningococcal disease occurred in one month at the University of California, Santa Barbara in late 2013. These cases were connected another that occurred on campus seven months earlier.)

“Word travels fast on a college campus. By the morning after the first case we had a line of students waiting for us to open. They wanted a vaccine. Telling people they were not at risk didn’t stop the panic.”

“National news outlets camped out on the campus. There was widespread fear and even panic among students, faculty, staff, and the surrounding city. The local school district initially prohibited our student teachers from their sites, and parents drove in to remove their children from the campus. Our campus child care center asked student volunteers to stay away. Parents demanded that we close the campus, and others did not want their students to come home for Thanksgiving holidays. Our local public health department and CDC had to establish special phone lines to handle the large volume of incoming distress calls.”

“Even ONE CASE in a college setting has major repercussions on the institution, and most colleges will not have the resources to pay for vaccines when the outbreaks occur.”

Peter Johnsen, MD, Director of Medical Services at Princeton University:

(Nine cases of serogroup B meningococcal disease occurred at or were associated with an outbreak at Princeton University from March 2013 through March 2014.)

“Our outbreak was sustained over a longer time than usual. The CDC could only provide us with one example of another university that had experienced a sustained outbreak. That outbreak went on for nearly three years. Other university outbreaks were associated with attack rates on the order of 15 to 25 cases per 100,000. Princeton experienced a rate greater than 130 per 100,000. This was comparable to the attack rate in the meningitis belt in Africa.”

David A. Ruth, PhD, dean of students at Drexel University:

(The last case associated with the Princeton outbreak was in a student from nearby Drexel University. The student had attended a party with Princeton undergraduates.)

“The questions and concerns came from all over the campus. From our faculty and our staff, and in this case, police officers as well, who weren’t sure if they were at risk because they were near the student who was sick. We heard from students, parents, media and the community. So trying to manage the emotions, manage the grief, manage the chaos, manage the sadness, while also managing students, managing parents, managing faculty and staff, managing the media—was— was continually challenging. One of the scariest things was the waiting. We expected another case because of what happened at Princeton. We called a meeting of the sorority that evening to let them know one of their best friends had just died, but also that there’s this cause of concern for meningitis. So as you can imagine, there’s panic and grief in this room full of women who lost their best friend and now are scared to death about their own lives as well.”

All universities where an outbreak occurred held emergency clinics to administer serogroup B vaccines to the campus community to help stop the outbreaks, but the best way to prevent these cases is to make sure all students are #BVaccinated before they step on campus. A routine recommendation for serogroup B vaccine would make that easier.

Even without a recommendation, every student can and should put asking an healthcare provider about the serogroup B meningococcal vaccine on their pre-college checklist:

Right-click to download and share!

Right-click to download and share!


This post is part of the #BVaccinated series based on NMA’s report, Beyond the Science: Putting a Face on Meningococcal Disease. As national policy regarding serogroup B meningococcal vaccination is discussed and implemented, NMA urges all those involved to consider these perspectives. We believe that routinely vaccinating our children against this disease is the right thing to do.

Jean’s Answers

14 May

Earlier this week we shared some perspectives on the often overlooked impact of meningococcal disease on friends and family members. We have one more story that we think everyone should hear.

T.E.A.M. member Amy Aiken was diagnosed with the flu in October 2011. That night, she started seeing spots and knew something was seriously wrong. She called 911 and lost consciousness in the ambulance. Shortly after her arrival in the ER, Amy’s kidneys failed and she was immediately put on dialysis. It turned out that Amy did not have the flu, she had meningococcal disease.

Jean and Amy Aiken

Jean and Amy Aiken

Amy asked her mother Jean, now an NMA M.O.M., four questions in the course of her illness. Questions no one else should ever have to ask, and no parent should have to answer.

Jean says:

The first thing she asked me when I walked into the ICU was— “Did I do the right thing?” By that she meant calling 911. I said, “Oh, absolutely!” It saved her life.

The next question was “Will I get better?” She asked this right after the doctor told me that she probably had an hour to live. But I have faith in an afterlife, and I don’t see death as a bad thing. So I was able to say “Amy, I guarantee you, you will get better.” Either she would live or be in heaven. When I made that guarantee, I literally felt her whole body relax. But I’ve always felt a little guilty. Did I lie to my daughter? It was our last conversation for two months. She was in a coma after that.

While she was in the coma we had to sign the paperwork for her feet to be amputated. The next question—the hot potato question—was how do we answer when she asks, “What happened to my legs?” I thought the doctors would handle that one, but they made it clear they did not want to be the ones to tell her. Amy never actually asked that question. Later she told me she just sensed, more than anything, that her feet weren’t there. She said she couldn’t look down for two weeks. Finally one day, she looked me in the eye, and I looked her back in the eye, and I just—kinda nodded, “Yes, I know, dear. I know they’re not there.”

 And the last question—and this is the one I dreaded the most was, “What made you think I would want to live this way?” I was so thankful that I had an answer when the question came. While she was in a coma, a friend directed me to some videos of survivors. It was amazing to see others who had dealt with amputations and were living. They were happy and I knew there was life after this.

The Aiken’s did not know that meningitis is potentially vaccine-preventable. Even if Amy had been vaccinated, the vaccine available at the time wouldn’t have protected her against serogroup B, which she had. Now Amy and Jean are working to ensure that all teens get A, C, W, Y and #BVaccinated.


This post is part of the #BVaccinated series based on NMA’s report, Beyond the Science: Putting a Face on Meningococcal Disease. As national policy regarding serogroup B meningococcal vaccination is discussed and implemented, NMA urges all those involved to consider these perspectives. We believe that routinely vaccinating our children against this disease is the right thing to do.

A Rare Disease, a Wide Impact

12 May

Approximately 600 – 1,000 people contract meningococcal disease in the U.S. each year. By epidemiological standards it is a rare disease, but that label disguises a much wider ripple effect.

At our January roundtable, NMA advocates spoke not only of the tremendous personal impact of surviving meningitis or of losing a child, but also of the ways one case of meningococcal disease can impact siblings, grandparents, extended family, friends, healthcare providers and community members.

Kyla shared how grateful she was for her sisters who helped care for her and who she knows were deeply affected by her illness: “The family members really suffer. My sisters suffered more than I did. I ended up as a quad amputee with a kidney transplant but they suffered significantly more than I did, especially my twin—she probably has PTSD. She was six months pregnant, had a young son and a husband and she moved her whole family from the Bay Area [San Francisco] to San Diego to take care of me. And then a year later, she donated the kidney that allowed me to get off of daily dialysis.”

Mike reflected on his family’s emotional journey: “A young girl asked me if I could go back and stop what happened to me, would I? My initial reaction is, “Of course,” because you know, to see what my wife went through—two of my three kids still struggle with what they went through. To see my 80-year-old father at the time, the only memory I have around the coma was my father standing over my bed, crying.”

Patti shared how losing her daughter to serogroup B meningitis still affects her relationships: “Since Kim died, I’m not the same wife to my husband. I’m not the same mother to my son. I’m not the same daughter to my parents.”

Sue spoke about the moment she lost her nephew to meningococcal disease, highlighting how the loss can be just as heartbreaking for extended family members: “I didn’t say goodbye to Evan in the hospital. Everyone else went in to say goodbye to him but me. I wanted to remember him as he had been. I should have gone in. And that will stay with me always.”

These stories represent just a fraction of the true reach of meningitis. Maybe you are reading this because you too are one of the many whose life has, in some way, been impacted by meningococcal disease.

Whether you have a personal connection or not, I hope you will join us in preventing this disease from impacting anyone else. Spread the word that all teens need to be vaccinated against serogroups A, C, W, and Y at age 11-12 and again at 16 and everyone should ask their healthcare provider about getting #BVaccinated.


This post is part of the #BVaccinated series based on NMA’s report, Beyond the Science: Putting a Face on Meningococcal Disease. As national policy regarding serogroup B meningococcal vaccination is discussed and implemented, NMA urges all those involved to consider these perspectives. We believe that routinely vaccinating our children against this disease is the right thing to do.

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