As cases of a rare, deadly infection rise, doctors worry fewer teens will get vaccinated

Deaths from a rare and dangerous bacterial infection could rise if fewer teens are vaccinated, doctors warn.

After the Centers for Disease Control and Prevention recommended that all adolescents get vaccinated against meningococcal disease in 2005, cases of the potentially deadly illness plummeted in the United States by 90%.

However, cases have sharply risen since 2021, likely due to a combination of mutating bacteria and declining rates of vaccination overall, especially among teens getting a booster dose for bacterial meningitis, doctors suggest.

Dr. Luis Ostrosky, an infectious disease doctor at UT Health in Houston, is concerned that as cases of bacterial meningitis climb in the United States, the CDC’s recent overhaul of the childhood vaccine schedule could lead to more deaths.

Under Health Secretary Robert F. Kennedy Jr.’s guidance, the CDC is no longer recommending a meningitis vaccine for all adolescents. The vaccine and booster protect against the most common types of the infection in the U.S., serogroups A, C, Y, W.

“We see quite a few cases of meningitis per year,” Ostrosky said.

Under the new guidance, the vaccines will be recommended for “high-risk groups,” although parents can still ask doctors to vaccinate their children through a process called “shared clinical decision making.”

Teenagers and college-age adults, who often spend a lot of time in groups or communal living spaces such as dorms, and people with HIV are considered at highest risk for the infection, caused by a group of bacteria called Neisseria meningitidis.

Vaccination is important not because the disease is common — around 3,000 people are diagnosed with bacterial meningitis in the U.S. each year — but because the infection is both extremely dangerous and fast-moving.

Bacterial meningitis can progress quickly, causing the brain to swell and limbs to develop gangrene and sepsis, and can kill within 24 hours.

Symptoms such as headache, stiff neck, vomiting and fever come on suddenly, and may be mistaken for other minor illnesses. It can be treated with antibiotics, but even with rapid diagnosis, about 15% of patients die.

“It’s really a devastating disease that keeps pediatricians up at night,” said Dr. Kevin Messacar, a professor of pediatric infectious disease at University of Colorado Anschutz in Aurora, Colorado. “It’s difficult to recognize, and we often see patients who are too late to bring back.”

Fast-acting and life-threatening

Why some people are susceptible isn’t well understood. The infection develops when usually harmless bacteria travel through the respiratory tract and infiltrate the membranes surrounding the brain and spinal cord, causing severe inflammation. These bacteria, which commonly live in the back of the throat, can spread from person to person through close contact.

It can lead to a life-threatening infection in someone whose immune system is compromised — sometimes by a simple cold or flu virus — or who doesn’t have immunity to those bacteria. Viruses and fungi can also cause meningitis, but bacterial meningitis is the most serious.

Among patients who survive, as many as 20% have lifelong disability or complications, including amputated limbs, hearing impairment and neurological problems.

“You can die from a brain hernia, or from sepsis,” Messacar said. “And if you survive a brain hernia, you will most likely have severe complications.”

In 2024, the CDC issued an alert about a rise in cases of a type of invasive meningococcal disease. More than 500 cases were reported, the highest since 2013. Most of the infections were due to a specific strain of the Y serogroup of bacteria, which is included in the previously recommended vaccine. The cases were more common in adults ages 30 to 60, in Black people and in people with HIV.

“It’s even more important now that we get meningococcal vaccines out to people given that we are seeing a spike in this Y strain,” Messacar said.

The Food and Drug Administration has approved three types of meningitis vaccines. In 2005, the CDC began recommending that 11- and 12-year-olds get vaccinated against the most common meningococcal serotypes, A, C, Y and W. Because of waning immunity, the CDC in 2011 added a booster recommendation for 16-year-olds to protect them through young adulthood. A vaccine for meningitis B and a combined shot are available for children or babies who are considered at high risk.

In a statement Monday, Kennedy said that the CDC’s new childhood vaccine schedule was “aligning the U.S. childhood vaccine schedule with international consensus.”

Dr. Peter Chin-Hong, an infectious disease doctor at the UCSF School of Medicine in San Francisco, said the new approach to meningitis vaccination in the U.S., which is based on Denmark’s, is flawed.

“You can’t just look at another country’s vaccine approach and photocopy it. You really have to look at what is happening in your own country,” Chin-Hong said. Given the safety of meningitis vaccines, “it makes sense to vaccinate.”

Alicia Stillman, who serves on a World Health Organization task force for eliminating meningitis, worries that by moving the vaccine into shared decision making, the CDC is creating hurdles for parents who want to protect their children.

Stillman’s daughter, Emily, died from meningitis B in 2013. Emily had been vaccinated against meningitis A, C, W and Y, but the FDA didn’t approve a vaccine for meningitis B until 2014.

Because many types of bacteria can cause bacterial meningitis, different vaccines are needed. The meningitis B vaccine hasn’t been recommended for all children but is available for people at high risk through the shared decision making process.

“I have watched medical professionals not bring [meningitis B vaccination] up,” said Stillman, who is the co-executive director of the American Society for Meningitis Prevention. “I have watched parents who are maybe a little less educated and not know how to ask about it, or they go to a public clinic instead of a private clinic where they have less time with a provider.”

She believes that could happen more broadly with the changed guidance.

What the research says

A CDC statement said the changes to the recommendation reflect the need for more data on certain vaccines, “including placebo-controlled randomized trials and long-term observational studies to better characterize vaccine benefits, risks, and outcomes.”

While there haven’t been placebo-controlled trials for meningitis vaccines — which would test how well a vaccine works either by deliberately infecting people with bacteria or by seeing how well they fare if they are infected in the real world — there have been many randomized clinical trials and other studies that use decades of data collected from both vaccinated and unvaccinated individuals in the real world.

Chin-Hong said placebo-controlled trials aren’t realistic or ethical for every drug, especially for life-threatening and rare diseases.

“A well-designed observational study, especially using decades of experience, can be just as informative as a randomized controlled trial,” Chin-Hong said.

A 2020 CDC report analyzed 20 clinical trials on meningococcal disease vaccines, including data from the Vaccine Adverse Event Reporting System (VAERS) and the Vaccine Safety Datalink (VS). The most common reported side effects were “mild to moderate,” and included swelling, fever and headache.

According to the CDC, the meningococcal disease vaccines are safe.

‘It’s pure hell’

In 2005, Katie Thompson, now 39, was infected with an antibiotic-resistant strain of bacterial meningitis when she was a college freshman, the same month the FDA approved the first MenACWY vaccine.

“I don’t know how to describe it besides it’s pure hell,” she said.

After five weeks in the hospital and nearly dying, she went home, but not without lifelong complications. Thompson, who lives outside of Charleston, South Carolina, still struggles with migraines and vestibular disorders that cause vertigo and nausea. The infection was hard on her organs and she uses a bladder stimulator that helps regulate both her bladder and nerves in the base of her spine.

“It’s just not a disease that you want to take a risk on,” she said. “It’s not one that you want to gamble with your child’s life.”

Two vaccines that remain universally recommended by the CDC — the Haemophilus influenzae type b, or Hib, vaccine and the pneumococcal vaccine — protect against some causes of bacterial meningitis. However, these vaccines don’t protect against meningitis A, C, W, Y or B.