Frankie Milley, founder and director of Meningitis Angels a national organization, had this to say about upcoming CDC hearings on meningococcal meningitis.
We were horrified and in a panic about a case of Ebola in the US. Though it does not always make the headlines or the health department report list, meningococcal meningitis attacks several thousand infants, children, teens and young adults in the United States every year. Sporadic outbreaks occur often leaving death and debilitation.
The disease is one of the quickest onsets of any and one of the most deadly and debilitating on earth. Yet we have to beg, cry and dedicate our lives in order to get FDA approved vaccines recommend to stop it."
Milley continued, "I cringe every time I hear “not cost affective” and low case stats. In recent weeks to quote an anti-vaccine activist, “Meningococcal meningitis is exceedingly rare. There were only about 390 cases in the U.S. last year."
Those 390 cases represent someone's child or family member that possibly died a horrible preventable death or was left without arms, legs or a face, loss of vision, brain damage, loss of hearing, kidney failure, severe seizure disorder and the list goes on."
Those are most likely cases on college campuses. “Meningitis does not stop at the dorm room door, said Milley. Possibly we see fewer cases across the high risk group because we vaccinate against the other most common strains. The CDC ACIP committee has done a wonderful job on past meningococcal recommendations. The work needs to be completed.
Because of this disease, families are thrown into social and economic nightmares. Those families are often left with children so debilitated, they require 24 hour a day care. The divorce rate and family dissolution is high. Some even report suicides. They have to fight for education, health care, prosthetics, disability benefits and more. The cost can run into the millions for the families, insurance companies and the government health care and educational programs. One has to ask is that cost affective.
Milley stated, "As a mother who carried her 6'2", 175 pound only child into an emergency room screaming for help, then helplessly watching as he laid on a cold emergency room table, blood coming from every orifice of his body and in less than 2 hours, death, I am sickened. 24 hours after Ryan's death I learned of a vaccine that was on the market but was never recommended. Therefore no education on the disease or accessibility to the vaccine. Ryan was in the high risk group as a teen. He did not have to die. It was then, I picked up the sword to fight and enjoining other families and survivors with me, we began a battle for life. Sadly, 17, years later we are still fighting.”
In February the ACIP committee recommended vaccinations for students on college campuses once an outbreak occurs. Outbreaks are happening now and will continue in the future with this kind of recommendation. “Once an outbreak occurs, a death or debilitation of a teen or young adult has usually occurred. Too little too late! Not one more death or debilitation of a teen or young adult should be allowed! It is preventable,” said Milley.
The CDC Advisory Committee on Immunization Practices (ACIP) will meet in late June to decide whether or not to recommend routine Meningococcal group B vaccines for middle school entry – college freshmen age.
Milley will once again testify and with her, Angel mom Wendy Meigs whose daughter had to have a kidney transplant and Angel Dad Scott Parkhurst, whose 17 year old son died from Men B last year. Parkhurst had to take his older son to Canada to get him vaccinated. He said, "No parent should have to take their child to another country to get a lifesaving vaccine, especially when it is available in the US. I will not lose another child to this preventable disease. "
Milley, other parents, health care professionals, other organizations and community leaders believe, The Men B vaccine should have the same routine recommendations as the other vaccines for meningococcal serogroups A, C, Y and W135 in the US.
David Berman, DO MS FAAP FPIDS with the Division of Pediatric Infectious Diseases
All Children's Hospital and Johns Hopkins Medicine stated, “Over the past two years, there have been several outbreaks of serogroup B meningococcal disease across US college campuses including University of California (Santa Barbara), Providence College, Princeton University and this year the University of Oregon. This list does not account for isolated cases of disease reported from other colleges including San Diego State, Georgetown, Kalamazoo, Drexel, the adolescent and the gay communities.”
Meningococcal disease has a tremendous impact factor. Its onset is abrupt and even with medical intervention, fatality can approach 15%. It has a short incubation period and spreads rapidly to other students or close contacts.
The good news is that the disease is preventable. Serogroup B has emerged as a leading cause of invasive disease in the US adolescent population. There are two safe and effective vaccines to prevent death and severe disability. I recommend that the ACIP move forward with a universal recommendation for teenagers and all those that will be attending college this fall.”
An ACIP committee’s routine recommendation of Men B will ensure education on the disease and vaccines, guarantee the accessibility and affordability of vaccine for all those teens and young adults most at risk.
Milley stated, “We must remember that 2 different vaccinations are needed in order to fully protect against meningococcal meningitis. To only focus on one gives parents and students a false since of security. The vaccines for meningococcal groups A, C, Y and W135 are different from the vaccines that prevent group B. They are all deadly! Teens and young adults are all at risk. To only make college recommendations for those living in dorms sends a message of less importance to other students and younger teens .”
Meningococcal B, like serogroups A, C, Y, and W135, progresses quickly and can cause serious debilitations or death in as little as 48 hours. It is a contagious disease that spreads in places where people/families live/gather in close quarters, share drinks such as bars and athletic events, food, cigarettes and have close intimate contact such as kissing. Experts claim smokers carry the bacteria “Neisseria meningitides” which causes the disease at a higher rate.
Berman said, “Let’s make the right decision and protect adolescents against this deadly disease. How many more outbreaks will we need to make a routine recommendation?”
Milley concluded with, “How many tears must we cry and how many must die or be debilitated before they listen?”
Please sign our petition; http://www.change.org/p/cdc-acip-committee-chair-encourage-the-committee-to-approve-routine-vaccination-for-teens-with-meningococcal-meningitis-group-b?recruiter=2063830&utm_source=share_petition&utm_medium=facebook&utm_campaign=petition_update&utm_term=des-lg-no_src-no_msg&fb_ref=Default
Angels launched their new Music video “Angels Wings” staring new country music artist Curtis Braly and some of the Angel kids. The video shares the devastation of meningitis through beautiful song that will inspire all on life. A PSA from Angels on this issue is attached. http://www.youtube.com/watch?v=ELVflh0DTms
Milley will be in Atlanta for the CDC/ACIP meeting beginning June 22nd -June 25th and available for media interviews. You may contact Milley or any of the Angels at Meningitis Angels MAMediarequest@aol.com or by visiting http://www.Meningitis-Angels.org and clciking on Contact Us.
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