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.”