CDC ruling on new meningitis vaccine disappoints grieving parents

Evan Bozof lost his battle with meningococcal disease. His mother, Lynn Bozof, is the president of the National Meningitis Association.

Story highlights

  • CDC votes to leave it up to parents and kids whether to get the vaccine for serogroup B
  • A quadvaccine for the other four main types of meningococcal disease has been recommended since 2005

Atlanta (CNN)Parents who lost their children to meningococcal disease lined up for more than an hour waiting their turn to speak to the CDC's Advisory Committee on Immunization Practices.

Scott Parkhurst of Portland, Oregon, speaking about his son Jacob: "In 36 hours, my son was dead."
Alicia Stillman of Kalamazoo, Michigan, mother of Emily: "By the next day, Emily was in a coma. I never saw her look at me and tell me she loved me before she died."
    Frankie Milley about her son Ryan: "I'll never dance with my son at a wedding. I'll never hold a grandchild."
    They were among dozens urging the committee to take the strongest action possible and put a recently FDA approved vaccine for serogroup B on the adolescent immunization schedule. Serogroup B is one of several strains of meningococcal disease, a rare but serious bacterial infection, and according to the CDC, causes one out of every three cases of meningococcal disease.
    A quadvaccine for the other four main types of meningococcal disease, A, C, W-135 and Y, has been fully recommended for 11-to-12-year-olds by the CDC since 2005. That's what parents and other advocates wanted to happen for this new vaccine for serogroup B, called MemB.
    Instead, the committee voted for a category B or "permissive" recommendation in adolescents 16 to 23, with a preferred age of 16 to 18. A "permissive" recommendation leaves it up to each parent and child to make the decision to vaccinate after a qualified health professional assesses their risk.

    'Is my child fully protected or not?'

    "We know that permissive recommendations don't allow for education, there is a hesitancy among physicians to recommend, and it confuses parents. 'Is my child fully protected or not?' " Frankie Milley of Meningitis Angels told the committee before the vote.
    "My parents have tried to get me the vaccine, and it took six months to get it," complained Jackie Ross. Her older sister Stephanie died from meningococcal disease at Drexel University in Philadelphia in March 2014. "Parents should not have to work this hard to get an FDA approved vaccine for their child."
    The committee voted for a category B recommendation after a lively discussion on the vaccine's safety and effectiveness, questions about the duration of the immunity and the cost of the vaccines, which averages $400 for the two-to-three-dose series.
    "I know there are concerns about the cost of these vaccines, but I hope you're accounting for the costs of not vaccinating," said meningitis survivor Andy Marso, as he showed the committee his fingerless hands. "That first year after my initial infection, I racked up almost $2 million in medical bills. That would have bought a lot of vaccines, right?"

    Ruling paves way for insurance coverage

    Laurie Stelzer also spoke in front of the CDC's Advisory Committee on Immunization Practices, as part of the National Meningitis Association. She lost her daughter Sara to the deadly strain of bacterial meningitis last fall. She says she's disappointed the committee didn't vote for a full recommendation but is thankful that the ruling will pave the way for public and private health insurance coverage for the vaccine.
    "I will continue to spread the word that the vaccine is approved and available and to spread the awareness of the symptoms of the disease," said Stelzer. "It will not be the end of the conversation."
    Committee members called for increased safety screening and pledged to continue to monitor new information. While it was not the decision many wanted, advocates do see it as a step forward.
      "Permission recommendation is definitely better than no recommendation," said Lynn Bozof, president of the National Meningitis Association. "It means groups like NMA will need to step up and educate parents and adolescents more, because they may go to their health care provider and he or she may not necessarily bring up the vaccine."
      "Parents are going to hear 'meningitis' and they're going to think, 'I've done that already.' It gets complicated explaining that, 'Yeah, your child has had the quadvaccine, but this covers the one strain that was missing.' So it will be more involved in educating parents, but it has to be done or there will still be cases."