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Grieving mom pushes CDC for broader use of meningitis B vaccine

Alicia Stillman wants to save others from disease that killed her daughter

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WEST BLOOMFIELD, Mich. – When 19-year-old Emily Stillman of West Bloomfield died from a meningitis B infection in 2013, her mother, Alicia, promised her she would find out why and prevent it from happening to others.

Since then, Alicia Stillman has worked tirelessly to fulfill that vow. In June, Stillman took her fight straight to the Centers for Disease Control and Prevention in Atlanta. She shared her family's anguish with the CDC's Advisory Committee on Immunization Practices, in hopes of making the vaccine that could have saved Emily available to everyone.

"I was there to tell the story of Emily," said Stillman. "So nobody thinks she was just a number, nobody thinks she was just one of X amount who died that year. She was a real person. She was a real beautiful soul who had her whole life ahead of her."

Watch Stillman's testimony here. It begins at 2:24:43.

Stillman joined other grieving families to testify about the devastating impact of meningitis B. In one of the many compelling moments, Stillman held up a photo of Emily, then a photo of her headstone. She told the panel of experts --

"My favorite thing about Emily is when she would hug, she would hug with her whole body, it wasn't limp arms around you. And now, when I want a hug, it's a cold stone. This is what I hug when I hug my daughter now."

When Emily died, there was no approved meningitis B vaccine in the United States. Now there is. It's approved for ages 10 to 25, but it's still not included in the vaccines routinely recommended for all children.

"I get emails every day from parents who go into their doctor's office, and the doctor still says it's not an approved vaccine," said Stillman.

Panel members raised concerns about potential side effects and questions about how long the protection will last. They also expressed reservations about the cost of vaccine, which ranges from $320 to $345.

"That breaks my heart because they are telling me Emily's life wasn't worth anything, and that is really really hard to hear," said Stillman. "Everything I have I would have traded in to protect my children."

She urged parents and physicians to take the risk seriously.

"In my wildest dreams, I could never have imagined that something like this would have taken one of my children."

The CDC advisory committee ultimately voted to expand the recommendation to a "permissive" recommendation for ages 16 to 23, essentially broadening the group of young people who should consider getting the vaccine.

Read more about the committee's decision here.

Stillman says she will continue to fight.

"We will get the broad recommendation. It's the right thing to do. We will get it. It's just a matter of when and how many more young people are going to die before we do," said Stillman.

The vaccine is now covered by the Vaccines For Children program, meaning it is free to those who qualify for the program. It is expected many private insurances will now cover it as well. The vaccine is available at some doctors' offices and at the Oakland County Health Department.

The Emily Stillman Foundation hosts several vaccination clinics each year. The next one is Saturday, August 22nd in Farmington Hills. You do need to make a reservation. A donation is requested towards the cost of the vaccine, but no one will be turned away for inability to pay. For details, click here.

Emily would have graduated from Kalamazoo College this spring.

"I know nothing I do will ever be enough or turn back the clock to bring back my Emily. But there are millions of other Emilys out there, and those Emilys can still be protected. And should be protected," said Stillman.

She hopes parents will get their children protected before sending them off to college this fall.

"Who's going to bring the refrigerator, who's going to bring the microwave, those are fun things about moving your kids to college. But be smart. Send them with their vaccines."