The decision by Health and Human Secretary Robert Kennedy Jr, and the Centers for Disease Control (CDC) to roll back recommendations for several childhood diseases, such as hepatitis A and B, rotavirus, influenza, COVID-19, RSV, and meningococcal disease is disheartening and downright dangerous. .
I know firsthand, because meningitis very nearly killed me.
I was in fifth grade, Even though I didn’t feel great one morning, I still went to school.
As the day wore on, I felt worse and began to feel pain in my legs. I left school and went home to rest. When I woke up from a nap, I was covered in purple blotches. My parents rushed me to the emergency room at Lawrence General Hospital. The doctors quickly recognized the signs of meningococcal disease and had me transferred to Children’s Hospital in Boston where it was confirmed I had meningitis B.
The infection progressed so rapidly that I was placed into a medically induced coma. Doctors told my family I had a 10% chance of surviving the night. To save my life, they amputated both my legs below the knee and many of my fingers. My kidneys also failed, and I was placed on dialysis.
I spent nearly 10 months in the hospital. First at Children’s Hospital, then at Boston’s Shriners Hospital for rehabilitation. I went through multiple surgeries, painful physical therapy, and months of learning how to live in a completely new body.
Two years later my kidneys failed for good. I resumed dialysis. I spent hours hooked up to machines three days a week. Fortunately, I was able to get a kidney transplant and a second chance at life. I still faced challenges related to meningitis, but I persevered, graduated from high school, and earned degrees in psychology and nursing.
Fast forward more than 20 years, in December 2024, my kidney began to fail again. I underwent a second transplant.
The CDC’s decision to cut vaccines like those that help prevent diseases like meningitis from spreading is an affront to anyone who has had one of these illnesses and poses a huge risk to public health.
Both meningitis vaccines – the MenACWY and MenB vaccines – are now recommended under the “shared clinical decision making” (SCDM) umbrella, meaning the vaccines for these illnesses are not routinely recommended for all adolescents and young adults. The decision rests with a conversation between the doctor and patient or parent — if those conversations happen at all.
The CDC’s own data shows the dangerous impact of SCDM recommendations. When vaccines for Meningitis B came to market, the CDC gave them a SCDM recommendation, despite Meningitis B being responsible for college outbreaks across the country, and unlike the routine recommendation that Meningitis ACWY vaccines already had. As a result, in 2024, vaccination coverage of at least 1 dose of MenACWY was 90.1% but only 36.9% for MenB among adolescents.
Changing the vaccine recommendations wasn’t necessary, it was political. Patients and parents have always had the right to decide which vaccines they want.
The new guidance replaces clarity with confusion where none need be.
Governor Healey has announced Massachusetts won’t follow the new CDC vaccination schedule. I am thankful to live in a state where vaccines are valued and protected.
Two bills at the State House will further protect our communities. S.1557 / H.2554 eliminate non-medical exemptions for childhood vaccines. I urge lawmakers to pass them.
I share my story as a warning and a reminder. I survived, but many people don’t. I strongly encourage all parents to make sure their kids are as protected as possible against meningitis by receiving both the MenACWY and MenB vaccines. Don’t wait for your doctor to start the conversation. And don’t assume your child is fully protected because they received one meningitis vaccine years ago. To learn more, visit the American Society for Meningitis Prevention at meningitisprevention.org.
Kayla St. Pierre is a Massachusetts-based advocate with the American Society for Meningitis Prevention.
