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Grandparents who remember a time before vaccines are urging immunization as measles cases rise

Grandparents for Vaccines has members across the country who share personal stories about a time before widespread childhood vaccination.

Arthur Lavin, a retired pediatrician, heads Grandparents for Vaccines, a group that advocates for immunization through sharing members' memories of vaccine-preventable illnesses.
Arthur Lavin, a retired pediatrician, heads Grandparents for Vaccines, a group that advocates for immunization through sharing members' memories of vaccine-preventable illnesses.Read moreGrandparents for Vaccines

Arthur Lavin remembers when diseases like measles, whooping cough, and polio were a fact of life -- with sometimes deadly consequences.

And the retired pediatrician and grandfather of four knows that these days, memories of a time before widespread childhood vaccination are vanishing.

“Vaccines not only erased disease, but they erased the memory of the disease. People having kids now don’t really have any memory of what these diseases are like,” he said. “We lived in that world.”

So a year ago, Lavin, increasingly alarmed by rising cases of vaccine-preventable diseases like measles, began organizing grandparents like himself to tell their stories.

Lavin is based in Cleveland, Ohio, but the advocacy group he founded, Grandparents for Vaccines, now has members across the country, including in Pennsylvania, who regularly speak to the press, publish personal accounts, and advocate in their communities in favor of vaccination.

Childhood vaccination rates have dropped. The United States this weekend reportedly lost its measles elimination status. And a spiraling measles outbreak in Pennsylvania has sickened more than 1,500 -- all signs, Lavin said, that the group’s work is more important than ever.

“Wherever we go, we’re finding grandparents who saying to us that they’d been desperate to have their voices heard,” he said. “Watching this happen, they know what’s going to happen when vaccines aren’t used.”

Some grandparents in the group have been inspired to tell their stories after years of silence.

Barbara Weinhold, 86, caught whooping cough when she was 10 years old. She thought she had a summer cold at first -- but then developed the telltale uncontrollable cough and a high-pitched “whoop” as she struggled to catch her breath.

Weinhold, who now lives in Doylestown, missed more than a month of school and eventually recovered. But by then, her four-month-old brother had contracted the disease.

“He was unable to overcome it,” he said.

His death haunted her for years. She rarely spoke of it.

As an adult, she became a nurse and started a career in public health. She made sure to vaccinate her own children as routine childhood vaccinations became more widespread and eventually required for school admission across the country.

“When vaccines came into existence, parents lined their kids up to get them – I don’t have to have my children suffer what I had to suffer,” she said.

But Weinhold rarely told her own story -- until last year, when she watched a television news segment about Grandparents for Vaccines. The group was recruiting members to share their experiences with vaccine-preventable illnesses.

“Percentages and all this number stuff don’t resonate [as well as] people telling their story, what they have been through,” she said. “I thought, I think I have a story.”

As cases of vaccine-preventable illnesses rise, Weinhold said, the group empowered her to share about her family’s loss.

“It took many, many many years to be able to even talk about it,” she said. But Grandparents for Vaccines gave me an opportunity to write the story, tell the story, and get it out with an ulterior purpose of helping others and preventing more childhood illnesses and deaths.”

Lavin says the stories about vaccine-preventable illnesses that he’s collected from fellow grandparents have one throughline: “It’s horrible.”

A woman who lost her twin at 5 to polio and now struggles with post-polio syndrome, a neurological disorder that can emerge decades after infection. A woman who contracted rubella along with a close friend while both were pregnant; the woman’s child was born without complications, but her friend’s baby suffered brain damage as a result of the infection. A woman whose sister contracted measles and developed brain swelling that resulted in severe, lifelong impairments.

“We’re seeing more and more people step away from vaccination. Grandparents for Vaccines would like the national conversation to shift so the mood is, ‘Why are we putting our grandchildren in harm’s way?” Lavin said.

Weinhold says she’s encouraged by how her work with the group has resonated with others. One young woman she spoke with recently said she had decided to vaccinate her newborn after hearing her story.

“I’m a big believer in planting seeds with people. We never know what’s going to happen to those seeds, but you’ve done your part,” Weinhold said. “My hope is that someone will read this, just like I heard about it on TV, and say, ‘I can be a part of that. I can get something going.’”

    Aubrey Whelan
    Bluesky
    I write stories about public health — covering government health agencies, the opioid crisis, infectious diseases, and access to care. I also report on issues that matter to the people who work in health care.