Serogroup B Testimony: Francesca Testa

This testimony was submitted to the Advisory Committee on Immunization Practices on June 26, 2015.

To Members of the ACIP Committee:

I write to you today as a survivor of meningococcal disease.

In a society with the best medicine and greatest healthcare opportunities, children, adolescents, and young adults should not be dying from a vaccine-preventable disease when there are vaccines available to protect against it.

At 17 years old, my life was changed forever. As a senior in high school, my thoughts, cares, and worries focused on clothes, makeup, dances, and most importantly, my senior prom. Within hours, all of this changed.

In April of 2006, I came down with what seemed like the flu. It began with chills, fever, sore muscles, and fatigue. Over a few days, my symptoms became progressively worse – a fever of 104 degrees, stiff neck, and a headache so severe that I could barely see. I went to my physician’s office and was diagnosed with the flu. But, my temperature continued to rise and I had severe hallucinations and confusion.

The next morning, my mother tried to wake me and I was unresponsive. She called an ambulance and the EMT noticed a purple rash covering me from head to toe. A spinal tap at the local hospital confirmed I had meningococcal disease. I was airlifted to Yale New Haven Hospital where I slipped into a coma and was put on a respirator to stabilize my breathing. During this time, my condition took a turn for the worst. Within hours, I went from being an athletic, energetic teenager to having a 20 percent chance of survival.

Over the next week, my condition stabilized from the antibiotic treatment, but my recovery was daunting. I had to learn to walk again from damage caused by the septic shock and I battled severe neurological symptoms. Although I survived, the long term complications and disabilities will remain with me for the rest of my life. At 17 years old, how do you come to terms with something that completely changes your life?

I had not been vaccinated against meningococcal disease. I feel lucky to have survived when such a high proportion of other young adults with this disease do not.

As someone who worked in college admissions for the last two years and is currently pursuing a public health degree (inspired, in part by my struggles with meningococcal disease), I know that most adolescents rely on their parents and doctors to teach them about diseases and prevention – including vaccinations. A broad recommendation will help protect adolescents by making the process easier so available vaccines are easily accessible.

I am recovered, but I am not the same. I will battle hearing loss, vision loss, chronic migraines, and long-term cognitive impairments for the rest of my life. The stress on caretakers, financial burdens of treatment and lifelong medical expenses, and grief are immense, not just for the survivors but for our entire families and communities.

This disease is real and devastating. It is heartbreaking to know there are approved vaccines that aren’t recommended for broad use among adolescents. Although the number of cases is modest, the ripple effect this disease can have in a community is staggering.

I strongly urge you to do the right thing and vote to routinely recommend serogroup B meningococcal vaccine for adolescents.

Thank you,
Francesca Testa, T.E.A.M. Member (Together Educating About Meningitis)
National Meningitis Association