Community rallied to share flu shot experiences before feds stopped the study

WASHINGTON -- Some Denver parents got texts during this winter’s brutal flu season with videos sharing why people in their neighborhoods chose flu shots for their kids, an unusual study about trust and vaccines in a historically Black community.

But no one will know how it worked out: The Trump administration canceled the project before the data could be analyzed -- and researchers aren’t the only ones upset.

“For someone like me, from the Black community who income-wise is on the lower end, we don’t often have a voice,” said Denver mom Chantyl Busby, one of the study’s community advisers. “Having this funding taken away from this project sends a horrible, horrible message. It’s almost like telling us all over again that our opinions don’t matter.”

How to talk about vaccines with parents – or anyone – is taking on new urgency: At least 216 U.S. children died of flu this season, the worst pediatric toll in 15 years, according to the Centers for Disease Control and Prevention. Unvaccinated children are fueling one of the country's largest measles outbreaks in decades, and another vaccine-preventable disease — whooping cough — is soaring, too.

At the same time Health Secretary Robert F. Kennedy Jr. questions vaccines long proven to be safe and effective. Moves by the Trump administration are making it increasingly uncertain that COVID-19 vaccines will be available this fall. And the administration has slashed funding for public health and medical research, including abruptly stopping studies of vaccine hesitancy.

“We need to understand what it is that is creating this challenge to vaccines and why,” said Michael Osterholm, who directs the University of Minnesota's Center for Infectious Disease Research and Policy and worries the country is entering “scientific dark ages."

At Denver Health, Dr. Joshua Williams is a pediatrician who every day has vaccine conversations with confused or worried parents. Some even ask if they’ll get kicked out of his practice for refusing immunizations.

Nope, Williams says: Building trust takes time.

“The most satisfying vaccine-related encounters I have are the ones in families who had significant concerns for a long time, came to trust me over the years as I cared for broken arms and ear infections – and ultimately vaccinated their child,” he said.

But in the TikTok age, Williams wondered if digital storytelling – seeing and hearing what led other families to choose vaccination – might help those decisions. He chose flu shots as the test case — just under half of U.S. children got one this season. And Black children are among those most at risk of getting seriously ill from influenza.

With a grant from the National Institutes of Health, Williams partnered with Denver’s nonprofit Center for African American Health to host workshops bringing volunteers together to discuss how influenza and the flu vaccine had impacted their lives. Professionals helped those who wanted to go the extra step turn them into 2- to 3-minute polished videos.

After two years of community engagement, five of those videos were part of the pilot study sending text messages to 200 families who get care at two Denver Health clinics.

In one video, a mother described getting her first flu vaccination along with her young daughter, making her own health decisions after leaving a controlling relationship.

In another, a grandmother explained how she’ll never again miss a vaccine appointment after her grandson spent his 4th birthday hospitalized with the flu.

Seeing “people that they look like, that they sound like, who have experiences they’ve been through that can go, ‘Hey, I felt like you felt but this changed my life,’” is powerful, said Busby, who OK'd her kids' flu vaccinations after questioning Williams during multiple family checkups.

The study's sudden cancellation means Williams can’t assess if the texted videos influenced families' vaccine decisions – lost data from more than two years of work and already-spent NIH dollars. It also jeopardizes the researchers' careers. While considering next steps, Williams has asked permission of community members to use some of the videos in his own practice as he discusses vaccination.

Williams gets personal, too, telling families that his kids are vaccinated and how his 95-year-old grandmother reminisces about the terror of polio during her own childhood before those vaccinations were developed.

“We’ve lost the collective memory about what it’s like to have these diseases in our community,” Williams said, ruefully noting the ongoing measles outbreak. “I think it’s going to take a collective voice from the community saying this is important, to remind those in power that we need to be allocating resources to infection prevention and vaccine hesitancy research.”

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AP video journalist Thomas Peipert contributed to this report.

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