Turning Tragedy into Advocacy

After the death of her daughter, a West Bloomfield mom sets out to educate community about meningitis B, which is an uncommon condition that can kill quickly
Emily Stillman

When Alicia Stillman’s daughter, Emily, called her one night in 2013 complaining of a headache, Stillman thought perhaps Emily was coming down with the flu. The Kalamazoo College student told her mom she probably just needed to rest up after staying up all night studying.

Two days later, Stillman received a call from the college, telling her she needed to get to the hospital right away. Emily had been diagnosed with meningitis B.

“My knowledge of meningitis was very limited, and I’m an educated woman,” says Stillman, of West Bloomfield. “But I knew my daughter had been given a ‘meningitis shot’ before going to college. On my way to theaa hospital, I called them back and said, ‘Please double-check the results. I don’t think it’s meningitis, because she’s had the vaccine and I don’t want her to be mistreated.’

“What I learned later on was that the meningitis shot covers serotypes A, C, W, and Y — those are four of the five most commonly seen in the United States,” she continues. “I didn’t know at the time that there was something called serotype B. And that serotype B was not covered by the shot and we didn’t have a vaccine that covered it in the United States.”

Stillman didn’t realize the severity of her daughter’s condition until she arrived at the hospital, where she found Emily intubated and in a coma. Meningitis can kill very quickly — even within hours of symptoms appearing. Emily died Feb. 2, 2013, 48 hours after Stillman received the call.

“After Emily died, I walked around for months, saying, ‘Why me? How could this have happened?’ ” Stillman says. “I believed in vaccines; I did everything the pediatrician asked me to do. I didn’t understand how I had sent my daughter to college unprotected.”

Several months after Emily’s death, meningitis B outbreaks occurred at Princeton University and at University of California-Santa Barbara. Those cases helped draw attention to serotype B, which accounts for about one-third of all meningococcal cases.

An Overview

Stillman wasn’t alone in her confusion over her daughter’s illness. Meningitis is not well understood in the United States, in part because there are different strains and causes.

The brain and spinal cord are covered by protective membranes called meninges. When the meninges become inflamed, usually due to an infection of the fluid surrounding the brain and spinal cord, the person develops meningitis. Bacteria and viruses are the two main causes of meningitis.

Bacterial meningitis is usually caused by an invasive bacterium called Neisseria meningitidis. It is typically more severe than the viral kind and can be life-threatening; people with viral meningitis often recover on their own.

According to the Centers for Disease Control, 600-1,000 cases of meningococcal disease are reported each year; 10-15 percent of cases lead to death, and about 20 percent of survivors are left with permanent disabilities. Anyone can get meningococcal disease, but infants, adolescents, and young adults are among those with the greatest risk, according to the National Meningitis Foundation.

Meningococcal disease, though not common, is easily transmissible. The bacterium lives in the back of the throat. Most strains cause no harm; they simply colonize someone’s throat and hang out. But once passed, through close-contact activities like kissing, coughing, or sharing utensils, they can turn deadly, especially if the recipient is immune-compromised. (It’s no surprise to medical professionals that outbreaks tend to occur among college students — a sleep-deprived population living in close quarters and subsisting on pizza and instant ramen.) While outbreaks make news, most cases happen in apparent isolation.

Part of the challenge of meningitis is that the symptoms can mimic flu. They include sudden onset of fever, headache, nausea, vomiting, and severe muscle aches, which progress rapidly. The illness can quickly progress to low blood pressure, confusion, and personality changes.

“Some things that can be helpful to differentiate meningitis from flu are stiff neck with fever and headache — those three together,” says Dr. Laraine Washer, an epidemiologist and clinical associate professor of internal medicine and infectious diseases at the University of Michigan. “If a rash is present as well, that’s even more concerning. And also rapid progression of the symptoms.”

In addition to being potentially lethal, bacterial meningitis frequently leads to septicemia, an infection of the blood, so that even those who survive the disease can be left with serious impairments, including blindness, hearing problems, and amputation.

“Prevention is difficult when you have a disease that is not common,” Washer says. “There are different ways we prevent. The first is
exposure prevention, which is essentially the vaccine.” (Other measures, such as avoiding close contact and not sharing drinking cups or utensils can be helpful during outbreaks. If someone has been exposed, they are treated preventively with antibiotics.)

The quadrivalent conjugate vaccine, available in the United States since 2005, protects against four serotypes of Neisseria meningitidis: A, C, W-135, and Y. The vaccine is recommended for adolescents at 11 or 12 years old, with a booster shot at 16. This is the vaccine that Stillman made sure her daughter had as a teen.

Type B can’t be rolled into quadrivalent vaccine, but it can be vaccinated against separately — and has been for several years abroad. But it wasn’t available in the United States when Emily went to college, even though it was given in the United Kingdom and Canada to children as young as infancy.

Preventing Meningitis B 

Alicia Stillman

After Emily’s death, Stillman learned everything she could about meningitis and the available vaccines. The matter felt especially pressing because her youngest child was about to enroll at the University of Michigan.

“I said, ‘I’m going to take him to Canada,’ ” Stillman says. “People heard I was going to do that and said, ‘Will you include my kid?’ I started chartering buses, sometimes multiple times in a week. It expanded, and people flew in from around the country to get on the bus.”

Meanwhile, she and other parents pressured the Food and Drug Administration to approve the use of the serotype B vaccine in the United States.

“We worked with Congress, went to the FDA and said, ‘this is unacceptable,’ ” Stillman says.

Two separate companies made a vaccine, which by January 2015 the FDA approved for individuals ages 10-25. The matter then went to the Centers for Disease Control for its recommendation. The CDC recommended the vaccine for ages 16-23. That decision meant insurance companies would cover it for individuals in that age group. For those younger than age 16, the vaccine is available and approved but not covered unless they are considered high risk.

“In the United Kingdom, the vaccine is recommended for infants,” Washer says. “There’s an ongoing discussion by the committee for advisory practices for the CDC as to what groups they’d make recommendations for. So I think it’s possible that (it will be approved for younger children). Currently we don’t immunize (young children) against the other strains. So I think an overall approach to vaccines should be considered.”

For Stillman, waiting on the CDC wasn’t going to work. She created a foundation in her daughter’s honor and, in March 2015, she began hosting vaccine clinics in partnership with local medical providers. (The vaccine, which requires 2-3 shots, costs between $320-$480.)

Stillman has also partnered with the state of Michigan to create a poster campaign to raise awareness of the vaccine, and she speaks at college campuses about its importance and about the symptoms of bacterial meningitis. (Michigan requires no vaccines to enroll in its public universities.)

“Emily was friends with everybody; she had a beautiful soul,” Stillman says. “When I said goodbye to her, I promised her — I knew she was going, she was brain-dead, and there was nothing I could do to change it — and I said, ‘I’m going to get to the bottom of this and figure out what’s going on.’

“My daughter didn’t have to die,” she adds. “My daughter died from a vaccine-preventable disease because that vaccine wasn’t available at the time. But it’s available now, and other kids don’t have to die.”

Getting Vaccinated

The meningitis B vaccine is approved for individuals ages 10-25 and recommended for those ages 16-21. Parents who wish to vaccinate their child and young adults should be able to obtain the shots at their physician’s office. The county health departments also provide the vaccines.

The Emily Stillman Foundation hosts vaccine clinics in Farmington Hills for those who lack insurance coverage for the vaccine and who can’t afford to pay for it. Alicia Stillman plans to hold a clinic in April. Dates are announced on the foundation’s website, foreveremily.org, and its Facebook page.