National media are finally asking Lyme patients what they think

Last week, we highlighted CNN’s interview with our CEO, Lorraine Johnson, about the challenges facing Lyme patients and the complexities surrounding a potential new vaccine.

This week, Scientific American published its own look at Pfizer’s Lyme vaccine now in development. The article focuses on the rising spread of Lyme, the science behind the vaccine, and what it could mean for public health. And once again, it includes a comment from Lorraine Johnson, representing the patient community.

For those who have followed Lyme coverage over the years, this is a notable development. For decades, national reporting on Lyme vaccines and research rarely included the voices of the people most affected. Patients dealing with chronic symptoms, misdiagnosis, and systemic barriers were often left out of the conversation entirely.

In both the CNN interview and the Scientific American article, Lorraine emphasized two core points that reflect long‑standing concerns within the Lyme community.

First, patients want a vaccine that addresses real‑world tick exposure, which often involves multiple infections. A Lyme‑only vaccine leaves people vulnerable to other serious tick‑borne diseases.

Second, she underscored the need for strong safety data and full transparency. After past experiences, the community wants clear evidence that any new vaccine is both safe and effective.

Seeing two major news organizations in two consecutive weeks seek out patient‑advocacy perspectives shows that something is shifting. National outlets are beginning to recognize that any discussion about Lyme disease, including possible vaccines, needs to reflect the lived experiences and concerns of patients.

The Lyme vaccine remains a subject of debate. Patient viewpoints deserve space in the broader public conversation. For a community that has fought so long to be heard, this growing visibility is an encouraging step forward.

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.