Meningococcal Disease Killed My Child, But a New Vaccine Means it Doesn’t Have to Kill Yours
This guest post was written by Neal Raisman, PhD, to highlight the threat of meningococcal disease in the U.S. as part of Vaccinate Your Family’s “State of the ImmUnion” campaign.
My son Isaac was a very healthy 26-year-old who worked out every day and took great pride in how and what he ate. On September 24, 2005 he called home from college to tell his mother he had a terrible headache and felt lousy. Since he complained of chills and a fever, my wife and I thought he was suffering with the flu and told him to get some sleep and drink lots of fluids. He called again to report that the headache was even worse and he felt even sicker. Again, his mother re-assured him that it was probably the flu.
Little did we know at that time, but Isaac did not have the flu.
What he had was serogroup type B meningitis and it was quickly eating at his body and brain.
He died soon after that call with his mother. It wasn’t until later that night that I was able to get into his apartment where I found his body. This is the last photo that was ever taken of our son.
Isaac had received a meningitis vaccine before college, but back in 2005, the only meningococcal vaccine available was one that covered the serogroup strains of A, C, W and Y. At that time there was no vaccine to prevent the B strain that killed our son.
But there is now.
I’m sharing our story today so that every mother and father will know that serogroup B meningococcal disease kills and maims without mercy.
Not every person infected will die like Isaac. Sometimes victims will live in a brain-dead coma. Some will lose limbs. Now that I know how quick and devastating this disease is, I must caution parents to do everything they can to protect their children before it is too late.
In 2014, nine years after we lost Isaac, the FDA approved the first vaccine to prevent the serogroup B strain of meningococcal disease.
In order to offer the most complete protection from all the preventable strains of meningococcal disease, this MenB vaccine needs to be administered in addition to the MenACWY vaccine that is already on the recommended immunization schedule.
While the current burden of disease appears to be low, there have been outbreaks of serogroup B meningococcal disease at U.S. colleges that have resulted in loss of limbs and loss of life. Following FDA approval, it is customary for the Advisory Committee on Immunization Practices (ACIP) to evaluate the data and determine whether the vaccine should be added to the recommended schedule. With FDA approval, the safety of the vaccine was not in question, however the ACIP felt it was necessary to continue to review data pertaining to vaccine effectiveness, duration of effectiveness and impact of the vaccine on carriage and herd immunity. Therefore, the initial ACIP decision was to make a routine recommendation for individuals at highest risk of disease and in outbreak situations, while recommending that those in the 16-23 year age range “may be vaccinated to provide short term protection against the strain”. This is what is known as a “permissive” or “Category B” recommendation.
In the beginning, there was speculation that due to this “Category B” recommendation, that not all insurance companies would cover the cost of the vaccine. However, as a condition of the Affordable Care Act (ACA), all health plans must start covering any recommended vaccine (even Category B) with no out-of-pocket costs when provided by an in-network healthcare provider. Health plans have until one year after the effective date of the recommendation to comply, so it is possible that some patients won’t be covered until their plan renewal, which may occur more than a year after the October 2015 recommendation was made. However, public health partners nationwide continue to report that providers (including Vaccine For Children providers) are not universally stocking the vaccine, nor making strong recommendations for its use. In addition, although the majority of health plans are covering the cost, some may not be following ACA guidelines, which can be quite ambiguous. Some may be covering the cost of the vaccine for one category of recipients (i.e. high risk) but not those who “may” be vaccinated.
As a parent of a child who died from meningococcal disease, I still worry that this ambiguous recommendation is leaving our children unprotected.
A vaccine is now available to prevent the B strain that my son died of. Yet this limited recommendation means that many doctors won’t be discussing the availability of the vaccine, and many parents won’t know that the vaccine is available. Worse yet, many parents may wrongfully believe their child is fully protected from all the preventable meningococcal strains when their child receives the MenACWY, which is not accurate.
So now we are left wondering, what is the benefit of the serogroup B meningococcal vaccine if parents aren’t aware that it is available or believe they can’t afford it? How many lives will be lost due to the current policy? And what will it cost to stop letting young men and women be horribly maimed or die?
Unfortunately, over the past few years college campuses across the country have seen outbreaks of this disease. Because of the way the disease spreads – through close personal contact – living in dorms, sharing drinks, and kissing all help spread meningitis from one person to the next. As stewards of these campus communities, we must act to protect our student and faculty population. Schools need to adopt stronger meningitis vaccine requirements – ensuring that students and their parents are better educated about the risk of meningitis, the symptoms of the disease and the various ways it can be transmitted and prevented.
However, college campuses can – and should – go one step further.
As a former college president, I believe we should make sure that every student who attends college has been vaccinated for all strains of meningitis. While there are already some colleges that require these vaccines, many also allow students to opt out of getting a vaccine through a waiver system. This allowance places these students and others at increased risk.
I’ve seen firsthand that this disease moves faster than we can react. Therefore, it is not good policy for colleges to wait until an outbreak has hit a community before they encourage students to get both types of meningococcal vaccines. Instead, colleges need to be proactive in their approach to help prevent meningitis before it has a chance to threaten the health and lives of their faculty and students.
After losing my own son, and realizing that kids are dying and losing limbs to this dreadful disease, I have decided to take action.
Every life has value and every adolescent deserves protection from all the vaccine preventable strains of meningitis. I’m hopeful that when the ACIP reviews further research in 2017 and beyond, they will find it appropriate to recommend serogroup B meningococcal vaccine for all children. In the meantime provider organizations ought to proactively educate doctors about the importance of stocking this vaccine and making a strong recommendation to their patients. And, families whose health insurance plans decline coverage for the vaccine should understand that under the Affordable Care Act they have the right to this coverage. Join me and the Global Heathy Living Foundation to help make sure this life-saving vaccine is available to every child.
For every child who receives the meningitis B vaccine, I know there is one less family that will risk having to experience what my family did. If only the vaccine had been available sooner, my son would still be with us today.
It may be too late for Isaac, but it is not too late for your sons and daughters.
Neal Raisman, PhD
For more information about meningococcal disease and the vaccines available to prevent it, visit the Vaccinate Your Family website.