In response to the decision earlier this week by the Centers for Disease Control and Prevention’s (CDC) Advisory Committee on Immunization Practices (ACIP) unanimous vote to ONLY use the new meningococcal B vaccine, Bexsero and Trumenba, in high-risk groups in the US, such as individuals with immune-deficiencies and use of vaccines during outbreaks, the meningitis advocacy organization, Meningitis Angels released the following statement:
The Center for Disease Control and Prevention’s Advisory Committee for Immunization Practices (ACIP) held a hearing earlier this week on vaccines for the strain of meningitis that is rapidly taking the lead causing meningococcal meningitis in the US.
The ACIP took a small first step with a permissive recommendation for two new vaccines that prevent Meningococcal serogroup B.
Frankie Milley, Angel’s founder and national executive director, in her testimony, stated her only child, Ryan died from meningococcal C at age 18. He went from perfect health, to blood coming from every orifice of his body, to death in less than 14 hours. There was an approved vaccine at the time of his death but there was no recommendation, no marketing, no education on the disease or vaccine, and no accessibility. She continued, with only a permissive recommendation he would have still died.”
Milley stated, “Permissive recommendation for the vaccines to be used in a college outbreak is a very dangerous thing to do. Once an outbreak occurs, a death or debilitation of a teen or young adult has usually occurred. The Men B vaccine should have the same routine recommendations as the other leading serogroups C and Y causing disease in the US. Vaccinations for these serogroups are ACIP recommended routinely for ages 10 – college freshmen age.”
An ACIP committee’s routine recommendation will ensure education on the disease and vaccines, and guarantee the accessibility and affordability of vaccine for all those teens and young adults most at risk.
Men B is responsible for an outbreak that has so far sickened four Oregonstudents, including Lauren Jones, who did not survive. In the last two years, cases of meningitis B have been reported at Princeton University,University of California-Santa Barbara, San Diego State University,Kalamazoo College, Drexel University, Georgetown University and Oregon, resulting in at least five deaths and amputations. Outbreaks also occurred in the New York and California Gay community taking lives. This does not include those isolated cases among US teens.
Newest addition to the Angel Team, Scott Parkhurst, of Oregon, in testimony, stated his youngest son, Jake, age 17, who is not counted in an outbreak, died a quick and painful death from Men B. His last words to his precious son were “fight Jake, I love you.” Parkhurst stated, He took his older son, who attends college, to Canada for his vaccination. Permissive recommendation would take Jake’s life all over.”
Andy Marso, Men B survivor and author of a new book “Worth the Pain” gave a compelling account of his own debilitating experience and why vaccination is cost effective in fighting the disease.
Also from Angels in attendance was Angel’s president Wendy Meigs whose daughter Leslie had to have a kidney transplant as a result of meningitis.
Meningitis B, like other types of bacterial meningitis, progresses quickly and can cause brain damage, hearing loss, vision loss, limb loss and death. It is a contagious disease that spreads in places where people live in close quarters, share drinks such as bars, food, cigarettes and have close intimate contact such as kissing. Teens and young adults are all at risk. “Meningitis does not stop at the dorm room door,” said Milley.
Milley concluded, “Without routine recommendations, more kids are going to die or be left debilitated and families will suffer as many other Angel families have unnecessarily. Permissive recommendation for Men B is like having a sinking ship with 100 persons on board, along with 100 life vest but only giving them to 50 passengers and letting the other 50 watch theirs hanging in the closet as they drown. How many tears must we cry and how many must die or be left debilitated before they listen?”
Angels from across the nation, will gather in Houston, in mid-March to launch their new educational campaign and get a head start on World Meningitis Day.
A PSA from Angels on this issue can be viewed at https://www.youtube.com/watch?v=catfUbBHPVU
For more information on meningitis or to contact Frankie Milley, visitwww.Meningitis-Angels.org