The ABC and Y of Meningococcal Meningitis

The ABC and Y of Meningococcal Meningitis

 

Meningitis Angels (Houston)

Meningitis Angels (MA) announces the launch of a national campaign to stop deadly meningococcal meningitis. Frankie Milley, the group’s national executive director, founded MA in memory of her only son, Ryan, who died of the disease.  “Ryan went from perfect health to blood coming from every orifice of his body to death in less than 14 hours,” Milley said. “It was preventable then and even more so now.”

Though meningococcal meningitis is considered rare in the U.S., parents who have lost children or care for severely disabled children as a result of this deadly disease will tell you not as rare as it should be.  

For many survivors of meningococcal disease, life is forever changed. They can lose limbs, hearing, vision and suffer brain damage. Each day can include prosthetics, reconstructive surgeries, organ transplants, learning disabilities, short term memory loss, joint diseases, digestive disorders, seizure disorders, mental illness and endless lists of medications.  Many require assistance with routine day to day living. They live in pain and face public ridicule. Families are often faced with financial ruin, divorce and even suicide.

The severe disabilities are a lifelong cost on their family and/or the government. The cost to care for one victim of this disease is phenomenal. “This can all be avoided,” Milley said. “With FDA approval of meningococcal sero-group B vaccine added to vaccines which prevent the other sero-groups in the U.S. we can and should eradicate this deadly disease.” Vaccination can do that.

FDA approval is just the first step. Once vaccines are approved they have to be recommended for use by the Centers for Disease Control and Prevention Advisory Committee on Immunization Practices (ACIP).

“ACIP recommendations of any vaccine ensures vaccine safety information, education on disease prevention, affordability of and accessibility of the vaccine to all in the approved and recommended age group,” Milley said. “Otherwise only those who can afford to pay for the vaccines themselves get it.”  

Menactra and Menveo, vaccines that prevent non-serogroup B meningitis, have been on the market several years now, and there are ACIP recommendations for ages 10 years through college age. But meningitis continues to attack American teens and young adults causing outbreaks, disabilities and death, in part because many school districts and colleges are not mandating the vaccine.

“We must create stronger requirements which follow ACIP recommendations,” Milley said. Last year the U.S. experienced outbreaks of meningococcal group B. Though mostly on college campuses, deadly cases have been reported among younger teens as well.

Scott Parkhurst, one of MA’s newest U.S. Regional Team Leaders can attest to that. His 17-year-old-son, Jake, died from the disease earlier this year. Parkhurst took his living son to Canada to get a meningitis B vaccine before it one was approved in the U.S.

Andy Marso, a Western MA Regional Team Leader and a survivor of meningitis B from Kansas, billed his father's insurance company for almost $2 million in medical costs in the first year after he contracted the disease while a student at the University of Kansas in 2004. "I was lucky to survive that night," Marso said. "I spent the next four months in the hospital, enduring painful treatments in a burn unit and eight surgeries, including amputations to parts of all four of my limbs. The initial costs were staggering, and I will have ongoing medical costs for the rest of my life, just to be able to stand and walk."  

 

Rayna Dubose, an Eastern MA US Team Leader and meningitis survivor from Maryland, lost both legs and hands. Dubose said, “Meningitis B took away my dreams or pro basketball. It was not preventable then but is now. It needs to be assessable to all. We can prevent this from taking or debilitating another life.”

“With the FDA approval of a meningococcal B vaccine we must have a broad ACIP recommendation for use,” Milley said. “The recommendation should match the existing meningococcal recommendation for other serogroups.”

“Most parents can’t afford to take a child to another country to get vaccinated, and they should not have to,” Milley added.

Milley along with other Angel families will testify in the February ACIP hearing on meningococcal B.

Milley believes all should be vaccinated completely against meningococcal meningitis upon middle school entry and high school exit.

For more information on meningococcal meningitis visit www.Meningitis-Angels.org or www.cdc.gov    See the new MA PSA at   https://www.youtube.com/watch?v=catfUbBHPVU

Frankie Milley is available by Contact Us on in the MA website

 
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