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Meningitis B leaves lifelong pain, high-cost burdens

BY ALICIA GALLEGOS

credit: SolStock/E+/Getty Images

At 14 years old, Carl Buher was a typical high school freshman with a life centered on friends, sports, and homework.

The 6-foot-4, 190-pound teenager was a year-round athlete with a special passion for basketball, which he hoped would land him a college scholarship.

That all changed in the fall of 2003, when Carl came home from school feeling kind of punk – chills, fever, body aches. The next day, when a strange, purple rash spread across his arms and legs, his parents rushed him to the emergency department. Doctors diagnosed Carl with meningococcal disease, serogroup B, a deadly infection that rapidly ravaged his body.

“I was seconds away from death,” recalled Carl, now 29. “My heart stopped three times. I was lucky they were able to keep bringing me back.”

Carl spent 3 weeks in a coma and remained hospitalized for months. Because of blood constriction to his limbs, both of his feet and several fingers were amputated. Skin grafts were performed on more than half his body.


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Doctors diagnosed Carl with meningococcal disease, serogroup B, a deadly infection that rapidly ravaged his body. “I was seconds away from death,” recalled Carl, now 29. “My heart stopped three times. I was lucky they were able to keep bringing me back.”

Carl recovered slowly, but life became much different for the teenager. Once out of the hospital, he split his time between schoolwork and rehabilitation therapy.

“I had to learn to write again,” Carl said in an interview. “I had to learn how to use utensils again because I was missing fingers. Having to learn that sports was not part of my everyday life and never being able to play like I did before, that was a big loss for me.”

Despite the lasting effects, Carl considers himself extremely fortunate to have survived his illness. Even when treated, meningococcal disease kills about 10%-15% of people who are infected, according to the Centers for Disease Control and Prevention. Of those who survive, up to 20% suffer debilitating effects such as brain damage, organ failure, and nervous system problems.

While meningococcal disease is rare, it often results in significant, lifelong costs for patients, families, and the community, said Stephen B. Calderwood, MD, who heads the infectious disease division at Massachusetts General Hospital in Boston. In 2016, about 370 cases of meningococcal disease were reported, according to the CDC.

“You’re talking about a disease that strikes often apparently healthy children, adolescents, and young adults and can kill them in under 24 hours,” Dr. Calderwood said in an interview. “It’s one of the most rapidly progressive infections.”

Of the six primary types of meningococcal disease, serogroup B is responsible for about one-third of all cases. The disease can manifest as meningitis, an infection of the brain or spinal cord, meningococcemia, an infection of the bloodstream, or a combination of both. Serogroup B causes close to 60% of meningococcal disease in children from birth to age 5 years. In addition to seniors, adolescents and young adults from age 16 to 23 years also are at high risk for serogroup B infections.

Carl Buher of Seattle is pictured with his wife Anna. Buher contracted menningococcal disease serogroup B as a high school freshman, which led to the loss of both feet and several fingers. “Ii was one of the lucky ones,” he says. “I know moms and dads who have lost their kids. I’m still here to speak for those who didn’t survive.” 

Of the six primary types of meningococcal disease, serogroup B is responsible for about one-third of all cases. The disease can manifest as meningitis, an infection of the brain or spinal cord, meningococcemia, an infection of the bloodstream, or a combination of both.

The disease tends to occur in young adults congregating in confined spaces, such as military bases and college campuses. From 2008 to 2016, 10 U.S. college campuses experienced outbreaks of serogroup B meningococcal disease. Nearly 50 students were infected, and at least 3 died.

“When one student or a handful of students on a campus get meningitis, it impacts the whole campus community,” said Lynn Bozof, president of the National Meningitis Association. “Meningococcal disease strikes quickly and is deadly, but it is rare, and many people are not aware of it, so its devastation can take people by surprise.”

Dr. Lynn Bozof

A costly health burden

Because of the often extensive care required to treat meningococcal disease and its sequelae, the illness carriers a heavy cost burden for health care systems.

The mean cost of meningococcal-related hospitalizations in the United States was about $20,000 per admission and an additional $26,178 in nonfacility, professional, and other ancillary costs during the course of the admission (Hum Vaccin. 2011 Jan 1;7[1]:96-101. Epub 2011 Jan 1).

The mean cost of meningococcal-related hospitalizations in the United States was about $20,000 per admission and an additional $26,178 in nonfacility, professional, and other ancillary costs during the course of the admission. Patients with meningococcal disease see another $22,230 in medical and pharmacy expenses for postdischarge care during the ensuing year. For complicated cases, the mean medical cost was about $72,000.

Patients with meningococcal disease see another $22,230 in medical and pharmacy expenses for postdischarge care during the ensuing year. For complicated cases, the mean medical cost was about $72,000, compared with a mean of about $42,000 for uncomplicated cases, a similar 2011 study found (Hum Vaccin. 2011 Apr;7[4]:458-65).

Patients with meningococcal disease generally spend time in an intensive care unit while physicians treat them with antibiotics and provide supportive care, such as respiratory assistance, Dr. Calderwood said.

“[Between] 10% and 20% of patients have some fairly serious additional complications,” he noted. “This is one of the infections where you [can] get gangrene in your fingers, toes, and nose. You can have hearing loss. You can have some fairly serious neurologic and also limb complications.”

Hospital length of stay varies depending on case severity. An analysis of 1,654 U.S. meningococcal cases published in 2006 found that 9 days was the mean length of stay. Patients who survived septic meningitis were hospitalized an average of 2 days longer (Value Health. 2006 Jul-Aug;9[4]:236-43). Patients who survived meningococcemia were more likely to be transfered to postacute care facilities, compared with those who survived meningitis without sepsis. The annual cumulative cost for all meningococcal disease cases examined in the study was $14 million. Managed care organizations and Medicaid were the two most prevalent primary payers.

Recovery from meningococcal disease can cost survivors substantial time and effort. After returning home from his hospital stay in 2004, Carl underwent physical and occupational therapy three times a week for almost 4 years.

“I was in a wheelchair full time because I hadn’t learned to walk with prosthetics yet,” he said. “I was pretty lucky; I had constant support from friends and family which really helped. But it’s hard; you feel like you get down to ground zero and have to work your [way] back up again.”

Recovery from meningococcal disease can cost survivors substantial time and effort. After returning home from his hospital stay in 2004, Carl underwent physical and occupational therapy three times a week for almost 4 years.

For Utibe Effiong, MD, his brush with meningitis B caused months of hearing loss, stiff joints, and walking difficulties. Dr. Effiong, an internist at St. Mary Mercy Hospital in Livonia, Mich., contracted meningitis B as a teenager during an outbreak in his native Nigeria. He was one of few survivors of the outbreak, he said in an interview.

“I woke up in the hospital after 2 weeks of coma,” he said. “When I woke up, I couldn’t walk. I couldn’t get out of bed on my own. What was more traumatic in terms of complications was my hearing [loss].

After weeks of physical therapy at home, Dr. Effiong regained muscle strength and his hearing eventually returned. Today, he is an advocate for global meningitis B prevention and vaccine awareness.

The world’s highest burden of meningococcal meningitis is in sub-Saharan Africa, where 30,000 cases are reported each year, according to the World Health Organization. “My chances of survival were minimal to zero in that setting, but somehow I survived,” Dr. Effiong said. “The doctors did the best they could, and I was lucky.”

Utibe Effiong, MD, a Livonia, Mich. internist wants to spread meningitis awareness after he survived the illness in Nigeria as a teenager.

Meningitis’ high societal cost

While Dr. Effiong made a full recovery from meningococcal disease, others are not as fortunate. About 20% of survivors live with long-term disabilities resulting from the infection, according to the CDC.

The disease ripples across society by striping healthy, young people of their vitality and subjecting many to lifelong infirmity, said Aaron Glatt, MD, an epidemiologist and infectious disease chief at South Nassau Communities Hospital in Hewlett, N.Y.

“If you’re talking about a young person with a [serious] disability for the rest of their life, that’s not only the horrible emotional toll or decreased quality of life, but it’s also a huge financial toll,” Dr. Glatt said in an interview. “Somebody’s paying for that disability for the rest of that person’s life.”

Containing an outbreak can be enormously expensive for a local community. Andrea Anonychuk, PhD, a health outcomes scientist at GlaxoSmithKline, Wavre, Belgium, and her colleagues found that the average cost per small containment strategy was $299,641, and the average cost per invasive meningococcal disease case was $41,857. In high-income countries, the average cost per large containment strategy was $579,851, while in low-income countries, the average cost per large containment strategy was $3.4 million (Pharmacoeconomics 2013 Jul;31[7]:563-76).

When a person becomes infected within a dense population, efforts are made to administer antibiotic prophylaxis to those who had proximity to the patient, Dr. Calderwood explains.

What is difficult to calculate is the emotional toll of such outbreaks, he notes. “The fear that comes from knowing this is a rapidly invasive and [potentially] fatal illness when it occurs strikes fear throughout the hearts of schools, communities, even hospital emergency rooms.”
A lesser-publicized societal cost is the burden on court systems that stem from meningococcal medical malpractice claims, said Claire Wright, evidence and policy manager for the Meningitis Research Foundation, headquartered in Bristol, England.

Dr. Aaron Glatt

“Meningitis can be quite hard to spot from mild viral illness in the early stages,” Ms. Wright said in an interview. “If there was delayed diagnosis, there can be medical claims against doctors. Those costs can be really expensive.”

Since losing his feet 15 years ago, Carl has grown accustomed to living with his disability. He married his college sweetheart, Anna, and now works as a civil engineer in Seattle. For the most part, he has moved past his meningococcal nightmare, he said, although there are always reminders.

“I still get sore every once in awhile on prosthetics, but that’s a [common] problem for people with prosthetics and skin grafts,” he said. “The grafts are visible on my arms, hands, and legs. I still have higher than normal out-of-pocket medical costs because of dealing with my prosthetics; I have to get adjustments every other month or so, and new legs about every 5 years.”

Claire Wright

An incalculable emotional toll

In 2012, Kimberly Coffey of East Islip, N.Y., was a vibrant 17-year-old with dreams of becoming a pediatric nurse. She was weeks away from graduating high school when she came home complaining of body aches and fever. Her mom, Patti Wukovits, called the pediatrician who suspected flu and recommended Kimberly be evaluated the next day.

The next morning, Ms. Wukovits, a registered nurse, noticed a pattern of small, purple dots on her daughter’s ankle. She rushed the teen to the doctor as the girl’s symptoms quickly worsened. Despite being diagnosed immediately with meningococcal infection, her condition rapidly deteriorated, Ms. Wukovits said in an interview.

“They treated her very quickly,” Ms. Wukovits said. “But unfortunately, they weren’t able to stop the progression of the disease. Within minutes of being in the ICU, her kidneys were failing, her heart was failing, and her lungs were failing.”

Although Kimberly had been vaccinated against other meningococcal strains, tests determined she had meningococcemia serogroup B, which at the time had no available vaccine. After experiencing cardiac arrest and being placed on a ventilator, a scan revealed impending brain death. Kimberly died less than 10 days after arriving at the hospital. She was buried in the prom dress she never had the chance to wear.

Although Kimberly had been vaccinated against other meningococcal strains, tests determined she had meningococcemia serogroup B, which at the time had no available vaccine. After experiencing cardiac arrest and being placed on a ventilator, a scan revealed impending brain death. Kimberly died less than 10 days after arriving at the hospital. She was buried in the prom dress she never had the chance to wear.

“How can a 17-year-old that is so healthy be taken so quickly?” Ms. Wukovits said. “It’s been almost 6 years, but it feels like yesterday. I just can’t believe my daughter is gone.”

For families, the emotional toll of losing a family member to meningococcal disease is incalculable. Family and friends often face a barrage of emotions including grief, anger, helplessness, and depression. Even with antibiotic therapy, the fatality rate of meningococcal disease is about 15% and up to 40% for meningococcemia, according to the CDC.

“Obviously, a fatality cannot be measured in terms of money,” Dr. Glatt said. “It’s human life. That’s the real cost.”

Since her daughter’s death, Ms. Wukovits founded the Kimberly Coffey Foundation, a nonprofit that provides education about meningococcal disease – particularly serogroup B – and advocates for full meningococcal vaccination.

“No one ever wants to think your child is going to die,” the mother said. “This is a devastating disease.”

Kimberly Coffey is pictured in her senior portrait. She was 17 when she contracted meningococcal disease serogroup B. She died less than 10 days later. Had she survived, she would have been a quadruple amputee due to blood loss to her limbs.

Patti Wukovits and her daughter Kimberly Coffey pose for a photo. “I thought she was fully protected because she was vaccinated,” Ms. Wukovits says. “But at that time, we didn’t have a vaccine for [meningitis B]. There was nothing I could do.”