Making a Difference

It’s Personal: Improving RSV Awareness During National Infant Immunization Week

During National Infant Immunization Week, Robin Johnson, Public Affairs and Patient Advocacy Lead, U.S. Vaccines, shares the story of her son’s RSV diagnosis and how she’s working every day to help amplify awareness of the virus that’s the leading cause of hospitalization for infants.

It’s been 23 years, but Robin Johnson can still clearly recall the day she and her husband Peter decided to take their infant son Lucas to the hospital. Just nine days old, Lucas was coughing, lethargic and having difficulty breathing. As new parents they second-guessed themselves on the drive over, but it turned out to be the right choice.

Lucas was diagnosed with respiratory syncytial virus (RSV), a common respiratory virus that can be serious in any infant but is especially dangerous for babies like Lucas, who was born with a neuromuscular disorder.

Lucas as a baby in the hospitalLucas was admitted to the pediatric intensive care unit (PICU), intubated, given ventilator support to increase oxygen to his lungs, and hospitalized for more than a week. He recovered, but Robin never forgot the experience, or the fear and confusion that remain so vivid all these years later.

“I remember my dad was in the PICU when they came to intubate Lucas. He told me later ‘what am I going to say to her if something happens?’ It was incredibly scary, and a tough road over the next couple of years. Early on, every winter was frightening. As a new parent, I would have wanted to know more about RSV, especially how common it is and whether there were ways to help protect babies and keep them safe,” she said. “I had no idea what RSV was; I had never heard of it.”

Surprisingly, most children will get RSV by the time they turn two years old. It’s more common in winter and typically causes mild symptoms such as runny nose, coughing and sneezing. However, all infants are at risk for the virus, which can lead to bronchiolitis, inflammation of the small airways in the lung, and life-threatening pneumonia. There is currently no vaccine or cure for RSV, although there is one prescription medication for preventing serious lung disease in premature infants and those with chronic lung and heart disease.

As one of Sanofi Pasteur’s Public Affairs and Patient Advocacy Leads for U.S. Vaccines, Robin works with professional organizations and patient advocates to raise awareness of vaccine-preventable diseases. During National Infant Immunization Week (NIIW), held April 24-May 1, she is helping amplify awareness of RSV as the leading cause of hospitalization for infants. She shares her story in hopes of arming other parents with information about the virus and ways to help prevent infection.

Part of Robin’s role is connecting with healthcare provider and advocacy communities to engage with stakeholders on the burden of infectious disease. Her work includes educating on public health measures to support improved access to preventive options for vaccine-preventable diseases.

She also focuses on the importance of vaccine acceptance for the benefit of public health, a topic that the COVID-19 pandemic has magnified.

“The availability of COVID-19 vaccines has increased conversation around all vaccines. It has helped people better understand what a vaccine is and how it works, and there’s benefit to that,” Robin noted. “My family’s story is part of the conversation. It has to be. Infectious diseases can be scary and parents can lose a child if they don’t know there is a way to better protect them. If there’s something we can do to help protect children from threats like RSV disease, and all families can get access to it, you find that path.”  

Robin Johnson and her family on vacation in 2019
Sawyer, Lucas, Peter and Robin Johnson on vacation in Copenhagen, Denmark, where Lucas studied abroad

Learn more about NIIW here: https://www.cdc.gov/vaccines/events/niiw/overview.html

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