Emily Stillman was 19-years-old and a sophomore at Kalamazoo College when she died after contracting meningitis B. Stillman had received the standard meningitis vaccine, but her grieving family soon learned that shot does not protect against the B strain.
Since Stillman's death, her family has been fighting to make a meningitis B vaccine available. Emily's mother Alicia Stillman sat down with us to discuss the latest developments in their battle.
"Since the fall, both vaccines have been approved and licensed in the United States," said Stillman.
It was the news Emily's mother had had been waiting for, but the victory was bittersweet.
"I sobbed and I sobbed. I worked so hard, and I was so excited for all the opportunities that now everybody has to get the protection, but it wasn't in time for my Emily," said Stillman.
There is still another big hurdle.
"Once a drug is approved, it goes to the CDC, to the ACIP board," said Stillman. "It's their responsibility to hand out the recommendation on how a drug or a vaccine is going to be used."
In February, that board decided to recommend the approved meningitis B vaccines for use in ages 10 to 25, but only in the case of an outbreak or people with weakened immune systems. That means the vaccine is not covered by insurance, and most doctors aren't carrying it.
"Like a slap in the face. Like here we go again," said Stillman. "When my daughter died at Kalamazoo, it was not an outbreak. She was a one. And the majority of cases, over 90 percent, are ones and twos all over the country."
The ACIP board meets again in June. Stillman will be there to testify.
"I will tell them to picture their child the way I had to see mine -- in a box," said Stillman. "It doesn't matter whether it's one or whether it's a million, however many children get this disease. When it's yours, it might as well be a million."
Stillman isn't waiting for the CDC. She is organizing her own vaccination clinics and accepting donations. The cost of the vaccine is ~$135 dollars per dose. Two doses are needed, at least 30 days apart.
"For some people it's what the cost of the vaccine is for me, and for others, it's whatever they can afford. I won't turn anybody away. Anyone who wants this protection should be able to get it," said Stillman. "This is fulfilling a promise I made to my daughter. I know she's proud."
The Emily Stillman Foundation will be sponsoring a clinic to administer the Bexsero MenB vaccines on Saturday, March 28th beginning at 10:00 a.m. at 30057 Orchard Lake Road in Farmington Hills. You do need to register in advance to make sure enough vaccine is available. To request a reservation, please email email@example.com
The Emily Stillman Foundation is also holding a comedy fundraiser on April 14 called "A Night of Laughs." For details, click here.