Enough is Enough: Preventing Serogroup B Meningococcal Disease

16 Dec

In October, shortly after the approval of the first meningococcal serogroup B vaccine in the U.S., I spoke before the Centers for Disease Control and Prevention (CDC)’s Advisory Committee on Immunization Practices (ACIP). I was joined by two parents, Stephen and Beverly Ross, who lost their daughter to serogroup B meningococcal disease.

The ACIP is a group of medical and public health experts that makes recommendations on how a vaccine should be used in the U.S. Once these recommendations are accepted by the director of the CDC and published, they become part of the official immunization schedule. By sharing our stories with the committee we help put a face on and give a voice to meningococcal disease.

The Ross’ testimony was moving and powerful. I think it is important to share it with all of you. Please take a moment to read the full text below and talk to your child’s healthcare provider about having them vaccinated against serogroup B.

“Good Morning. My name is Stephen Ross and this is my wife Beverly. We’re here today with the National Meningitis Association.

We are the parents of Stephanie Ross. I hope her name still rings a bell with you. She was the Drexel University student who died after contracting serogroup B meningitis in March. She went to bed early one Sunday night because she was feeling tired and only a few hours later was fighting for her life. It was a battle she was destined to lose. She was just 19 years old.

She was an intelligent young woman who was attending Drexel University on a Ben Franklin Fellowship. She was well liked at Drexel as shown by the busload of her fellow students who traveled across the vast state of Pennsylvania the weekend before finals to say goodbye to her. She always went out of her way to assist anyone who asked for help and even some who didn’t. She was quickly growing into a leadership role with her Phi Mu sorority sisters.

When talking about her we always like to share a quote that was posted on one of the websites that she created before her passing in connection with a fundraiser for the Children’s Hospital of Philadelphia. It said: “Thank you for always living your life the way it is supposed to be lived – full of love, laughter, and kindness – to not just friends, but strangers as well.”

Since Stephanie’s passing at least two more college students have died from the serogroup B disease. When will it stop? We need to say enough is enough. As a percentage of all of the students that populate our country’s college campuses we realize that these deaths represent a small number. But when the student is one of yours any number above zero is unacceptable – especially if it could have been prevented. Parents have lots of things to think about when we send our children off to college. We shouldn’t have to worry about this disease. Let’s do the right thing to help protect our children from this devastating bacteria.

We seem to have the means to stop the spread of this disease, as evidenced by the fact that no additional cases have been reported from the Princeton campus since the use of the serogroup B vaccine there! We don’t want any more parents to receive a call like we did to hear that their child has died from contracting serogroup B meningitis.

Now that the FDA has licensed the first of the serogroup B meningococcal vaccines, we hope you will recommend them for adolescents and young adults. At the very least, they should be recommended for college students as they seem to be the largest group at risk. Like us, many parents and students may mistakenly believe that the previously licensed vaccines protected them against all of the serogroups that can affect our children.

In the coming weeks, several groups associated with Drexel University will be submitting letters supporting a recommendation for college-age adults. Some of them will be from Stephanie’s classmates who would like nothing more than to be protected from the bacteria that took the life of their dear friend. They want to be able to win the battle over the disease that Stephanie could not conquer. We are here on their behalf. And on behalf of her sister, Jacquelynn, who is now an only child and a freshman at one of the largest universities in the U.S.

It would be a tragedy, like Stephanie’s death, to see these vaccines approved by the FDA but not widely recommended.

Thank you for the opportunity to address you.”

A Big Step Forward and What Happens Next

30 Oct

In October 2000, the Centers for Disease Control and Prevention (CDC)’s Advisory Committee on Immunization Practices (ACIP) recommended that college students be informed that they were at higher risk for meningococcal disease and told there was a vaccine. It was the right thing to do—to protect our children.

In 2005, a new meningococcal vaccine became available and ACIP recommended it. It protected our adolescents and teens against serogroups A, C, W and Y. Again, it was the right thing to do.

Later, ACIP recommended a booster dose to ensure our kids stayed protected. It was the right thing to do.

But we aren’t done protecting our teens. I have heard over and over from parents whose children have suffered from serogroup B meningococcal disease, “I thought they were protected against meningitis,” they say. They believed their kids had the broadest possible protection.

I was thrilled yesterday (October 29) when the U.S. Food and Drug Administration (FDA) announced the approval of the first vaccine in the United States to prevent serogroup B meningococcal disease. I am hopeful that a second serogroup B vaccine, currently in priority review with the FDA, will also be approved soon. We now have the tools to protect our kids against five serogroups of meningococcal disease.  This includes all the serogroups that cause disease in the U.S.

Now that a vaccine is approved, we need to do the right thing again and routinely recommend serogroup B vaccination for adolescents and teens. We need to protect our children. It is what parents do. It is what society should do.

In the meantime, we know many people have questions about this new vaccine and what it means for their families. We hope this FAQ will help provide some answers:

1. How is this vaccine different from the meningococcal vaccines currently recommended by the CDC? If my children have already been vaccinated do they need to get this new vaccine?

Before now, vaccines licensed in the U.S. helped protect against four major strains of the disease: A, C, W and Y. Those vaccines do not prevent serogroup B meningococcal disease, which accounts for about one-third of U.S. cases. (To learn more about serogroup B meningococcal disease, please visit our website.)

To help protect against all serogroups, teens will need to receive:

  • Vaccination against serogroups A, C, W and Y. Recommended by the CDC for routine vaccination at age 11-12 with a booster dose at age 16.
  • Vaccination against serogroup B (the newly approved vaccine is a three-dose series, the vaccine still in review by the FDA will likely require two doses). The ACIP has not yet issued a recommendation for serogroup B meningococcal vaccination (see question five), however, now is a good time to start a conversation with a healthcare provider about it.

2. When will the vaccine be available? How do I get it?

The manufacturer is working to bring the vaccine to the U.S. but it may take two to three weeks for supply to become available. NMA encourages parents to start a conversation with your child’s healthcare provider about having them vaccinated against serogroup B.

3. Why wasn’t there a vaccine against serogroup B meningococcal disease before now?

Vaccines to protect against serogroup B meningococcal disease were challenging to develop because serogroup B behaves differently than other serogroups. Scientists overcame these challenges and two vaccines were developed. Because of recent serogroup B outbreaks and the devastating effects of meningococcal disease, the FDA granted both vaccines breakthrough therapy status, allowing for an accelerated review process. We expect the second serogroup B vaccine to be licensed soon.

For a great overview of the vaccine development, testing and regulation process visit the History of Vaccines website.

4. Why was the vaccine only licensed for individuals age 10-25?

The age group is based on the clinical trial data submitted by the vaccine manufacturer to the FDA.

5. What is the difference between licensure/approval and recommendation?

The FDA decides whether to approve use, known as licensure, after reviewing clinical data submitted by vaccine manufacturers. Once a vaccine is approved, the CDC’s ACIP, a group of medical and public health experts, makes recommendations on whether and how the vaccine should be used in the U.S. Once these recommendations are accepted by the Director of the CDC and published, they become part of the official immunization schedule.

To learn more about the ACIP and the recommendation process, click here.

6. What can I do to help protect children, teens and young adults from meningococcal disease?

Vaccination offers the best protection against meningococcal disease:

  • Make sure all tweens/teens get vaccinated against serogroups A, C, W and Y at age 11-12 and go back for a booster at age 16. Recent data showed that less than 30% of teens who had received the initial dose also received the recommended booster. We need to do better.
  • Now that there is an approved vaccine for serogroup B, we encourage you to tell your healthcare provider that you want it.

Even if you/your family members have been vaccinated against meningococcal disease you should learn the symptoms so you can watch for it in yourself or in others. We also have resources you can share to help educate friends, family or patients.

Finally, you can follow NMA on Facebook and Twitter where we will let you know when there are opportunities to help raise awareness of this disease and advocate for its prevention.

Recent Cases of Serogroup B Meningococcal Disease Reinforce Need for U.S. Vaccine: A Statement from the National Meningitis Association

24 Sep

Every case of serogroup B meningococcal disease, like the recent case at Georgetown University, is an important reminder that there is an unmet public health need in the prevention of bacterial meningitis in the U.S. Please take a moment to watch this important message from NMA President Lynn Bozof.

A Physician’s Perspective

21 Aug

As a parent who lost a child to a vaccine-preventable disease, I share my story as often as I can to help others learn about the importance of immunization. In my role as president of the National Meningitis Association, I also attend health and medical conferences to encourage healthcare professionals to take an active role in increasing adolescent vaccination efforts in their practices.

Often at these events, a physician, nurse or other healthcare professional will tell me that they saw a case of meningococcal disease as many as 20-30 years ago. They say the infection was so devastating that they will never forget how important it is to prevent it through vaccination. But they worry that, because meningococcal disease is rare, colleagues who have never seen a case will be less attentive to ensuring adolescent patients are vaccinated.

Recently, an article by Dr. Kristie Rivers reminded me of these stories. The routine childhood immunization program has become so successful in the U.S. that once common, deadly or disabling diseases are now so rare that healthcare professionals may have a hard time recognizing them. Unfortunately with the decline in parents who choose to fully vaccinate their children, these illnesses are making a resurgence—a change that Dr. Rivers has witnessed in her 10 years as a practicing pediatrician.

I hope you take a moment to read her perspective and share this informative article with any healthcare professionals that you know as well as parents. Together we can help make sure more all of our children get all of the protection available to them today.

College Health 101: Check the Meningitis Booster Off Your List

8 Aug

Last month the CDC shared some good and bad news. While more U.S. teens are receiving their first dose of meningococcal vaccine than ever before (77.8%, up from 74% in 2012), only 29.6% also received the recommended booster.

The booster dose is recommended for all teens at age 16 because the protection they received from the first dose begins to wear off over time. It’s critical that kids receive the booster before they head off to college, where irregular sleep schedules, dorm life and crowded social events can challenge their immune system and put them at greater risk for meningitis.

I lost my son Evan to meningitis when he was a 20-year-old college junior. When Evan left for college, meningococcal vaccination was not routinely recommended or readily available. I had no idea that adolescents were at risk for meningitis or that it was potentially preventable. Now, every parent has a chance to help protect their child by making sure their teen is fully vaccinated before leaving for campus.

Every parent and college student should also become familiar with the symptoms of meningitis. While vaccination offers the best chance of protection, it is not 100 percent effective, and there are some strains of the infection that are not covered by currently available vaccines.

If you’re helping a teen or young adult prepare to leave for school, it can be easy to forget things. The National Meningitis Association created this checklist of important reminders to help both you and your teen. Please use and share this resource with the college-bound students in your life. And please don’t forget the pre-college meningitis booster!

Check List

 

A Teary Day That Never Ends

17 Mar

I try to block it out.  I try to keep busy.  But it won’t go away.   It will never go away.  I think I am doing okay, and then something triggers the waterfall of tears.  Shouldn’t they all be gone by now?  It’s been almost 16 years, but the tears will never be gone.  I look at a picture of my two sons, taken just a few months before Evan died from meningococcal disease.

Evan and Ryan, 1997

Evan and Ryan, 1997

I think, I wish, that I had more pictures.  How was I to know that I missed opportunities to capture the special bond between two brothers who loved each other more than you can believe?  I thought I had a lifetime for pictures, for memories, but I didn’t.  And now, I can’t go back and get more pictures.  I have to live with the memories and what pictures I have.  I share the picture with my daughter-in-law, who never knew Evan.  She is angry that this disease took away her chance to meet her husband’s brother and for her children to have Uncle Evan around.  My husband and I just want our son back, and it will never happen.  My family will never be complete.

Never forget how precious this life is.

5 Jan

kasey's_picture_of_kimIt’s not always the parents, children, and siblings who grieve when someone is lost.  Sometimes friends, in-laws, and others share in the grief.  My daughter-in-law did not even know my son who died, but she grieves his loss, nevertheless.  The poignant words below were written by Kimberly Coffey’s sister-in-law.  Her words resonated with me, and I hope they do with you as well.

This weekend would be the 19th birthday on Earth of my beautiful sister-in-law Kimberly Coffey.

I would like to use this post to talk about how precious and amazing our lives are. We are here on Earth for a blip, the blink of an eye; let’s always make sure we use that time to LIVE, REALLY LIVE. I know, I know it is easy to sit at your computer screen and read this post and say I will! But, really, get out there. Incredible sunrises, beautiful sunsets and full bright, beautiful days await you; every day is a new chance to do whatever you want to do. No matter your circumstances, no matter where you live do what you can to make every day count. Smile at strangers, laugh at jokes, don’t let the negativity get to you. Be the brightest light in the room. Shine, shine, shine. Be kind and love unconditionally. Give second chances Do what you can to show your family you ADORE them. Paradise may await us after this life, but we have a pretty little bit of paradise here on Earth, don’t we? Celebrate your chance to breathe this air, celebrate every second you have with the people, animals and the land you love. Know that every day is a new beginning. Get outside every day and thank whatever or whoever put us here. You are incredible. You can change the world, your world, a little bit. Get out there and do it. I have faith in you.

Kim’s life on Earth was bright beyond belief. She brightened the lives of people around her every single day. When her life here was cut short by a rare (no vaccine is available yet) strain of Meningitis, our world was devastated, shaken to the core. I had the incredible chance of knowing her for a small bit of time and I cherish every memory I have of her. She was hysterically funny, incredibly smart and a shining beacon of love and life; so much life in such a young girl. I try to live like her every day. She was confident, beautiful and kind.

Even though Kim was vaccinated against Meningitis, there exists no vaccine for the B-strain which she caught on an off-chance. However, the other strains of Meningitis are a REAL threat and there is a vaccine for these strains. Meningitis attacks and kills bright lights like Kim every single day. Meningitis can kill in under 24 hours with no symptoms more than those of influenza. The importance of this vaccine is undeniable. You can save your life, and the lives of others (if you’re a carrier, others can contract it from you). Honor my gorgeous sister-in-law’s life (and birthday) and get vaccinated.

Get involved with the National Meningitis Association however you can and donate whatever you have (even a dollar will do) to help them get the word out about the dangers involved with meningococcal disease. Thank you in advance, please spread the word. Honor Kim and her incredible life.

We love you Kim, Happy Birthday!

Follow

Get every new post delivered to your Inbox.

Join 15,490 other followers