People who support vaccinations are typically not a loud advocacy bloc. But they’re now mobilizing urgently to find their collective voice.
They’re signing petitions, contacting lawmakers, and sharing personal stories about the importance of vaccines to counter their opponents’ emotional anecdotes about sick or autistic children.
Even the 89-year-old former first lady Rosalynn Carter has gotten involved, writing a letter delivered through aides to first lady Melania Trump requesting a meeting on vaccinations.
It’s a dramatic turnabout for a coalition that has seen little need for vocal advocacy in the past — but now sees fresh threats to public health popping up both in states and at the federal level.
“We’re trying to say there are people here [and] they do care” about promoting evidence-based vaccine policy, said Amy Pisani, executive director of Every Child By Two, a group which advocates for timely childhood vaccinations. “We just haven’t asked them to do anything in the past.”
The perceived threats are many, and they come from the highest level: President Trump has a long history of expressing doubts about the safety of vaccines — and promoting the debunked notion that they cause autism — despite broad scientific consensus that they’re safe.
During his campaign, Trump met with a group of anti-vaccine advocates including the discredited former doctor Andrew Wakefield, who seeded the anti-vaccine movement with fraudulent science. Wakefield popped up again last month at one of Trump’s inaugural balls.
Most alarming to supporters of vaccines, earlier this month the outspoken vaccine critic Robert F. Kennedy Jr. told reporters he’d be joining the Trump administration to chair a new commission on vaccine safety. A spokeswoman for Trump later said no decision had been made.
Voices for Vaccines, an advocacy group for parents, has seen spikes in membership each time stories about Trump’s ties to the anti-vaccine movement hit the news, according to executive director Karen Ernst.
A plea from one First Lady to another
Rosalynn Carter has long been a big advocate for childhood vaccines. She cofounded Every Child By Two in 1991 and still serves as the group’s president.
Her letter to Melania Trump requested a meeting to talk about what she has learned in her decades of work on vaccinations. She suggested they be joined by experts who study vaccines and autism. One key goal: to make the case that a new government commission on vaccine safety is not needed, according to Pisani.
“Mrs. Carter wants to make sure that the last 40 years that she has spent on this issue gets maintained,” Pisani said. “We want to help Mrs. Trump develop a platform if she’s interested — or Ivanka Trump — to help ensure that the 12,000 babies that are born every day get vaccinated.”
An aide hand-delivered Carter’s letter to a White House aide on Inauguration Day.
The White House did not return a request for comment about whether Melania Trump plans to take Carter up on the meeting.
The power of personal stories
Perhaps the most powerful weapon that vaccine skeptics wield are stories of children whose behavior changed shortly after they got their childhood shots. Clear signs of autism often emerge in the toddler years, just as children are getting vaccinations, but scientists say there is no connection.
Yet the stories have undeniable impact.
“It’s difficult to match up boring science against a story of a parent who ‘watched their child change overnight because of the vaccine that they got,'” said Diane Peterson, who works on state policy for the Immunization Action Coalition.
Vaccine opponents are already gathering ammunition. As they travel the country to promote the conspiracy-theory-fueled film “Vaxxed,” they’re soliciting stories about alleged vaccine injuries. In a Facebook Live video posted earlier this month, Vaxxed promoters urged viewers to write down those stories — and address them to President Trump.
Pro-vaccination advocates have had some success with stories of their own.
In 2015, for instance, they pushed through a law in California eliminating non-medical exemptions to school vaccination requirements. One key element: the stirring testimony of a little boy with leukemia named Rhett Krawitt. He couldn’t be vaccinated because of a weak immune system, so when a measles outbreak hit the state, he had to depend on a critical mass of his community being vaccinated to avoid preventable disease.
Even before the November election, several pro-vaccination groups collaborated to collect more such personal stories: A beloved friend named Jennifer who died at 40 from cervical cancer that might have been prevented by the HPV vaccine. A baby named Mikey whose immunizations help keep his grandmother safe. A mother named Paula whose friend’s baby contracted meningitis and became permanently disabled.
Ernst, who’s involved in the project, said she’s prepared to deliver the personal tales to officials who might have any say over a vaccine safety commission. She wants them to “understand that the stories they’re hearing from one side aren’t the full stories, that there are all these other stories.”
Campaining to shape Trumpcare
Republicans’ plans to dismantle the Affordable Care Act could make it harder to access vaccines — so pro-vaccination advocates are taking action now to try to shape the replacement.
The money pays for things like educating clinicians, tracking immunization rates in communities, and delivering free vaccines to certain poor children. The online petition had more than 3,600 signatures by Monday afternoon, according to Pisani. She plans to deliver the signatures by email to top federal lawmakers on Friday.
Activists are also worried about the fate of a provision in the Affordable Care Act that makes vaccines available for free for insured patients. Without such a provision, some people might have to pay hundreds of dollars for recommended vaccines.
In that hypothetical situation, “you’ve got families who are picking and choosing vaccines, maybe not because of any philosophical reason but because the paycheck isn’t going to cover it this week,” Ernst said.
Recognizing that plenty of parents who believe in vaccines also voted for Republicans vowing to repeal the Affordable Care Act, some advocates have been careful to say they’re open-minded about GOP replacement plans — so long as those plans support access to vaccines. It’s a reminder that views about vaccines don’t split neatly down partisan lines.
Making the case at the statehouse
Despite the alarm about Trump’s views, much vaccination policy is made at the state level, where battles rage over issues such as whether parents should be allowed to opt out of school vaccine requirements for religious or philosophical reasons. (The number of students who make use of such exemptions is on the rise in some states.)
One of the hottest battlegrounds: Texas, which allows parents to opt out of vaccinating for both religious and personal reasons. In recent months, opposing groups have sprung up both to defend and to condemn such exemptions.
In each of the next four months, the pro-vaccine parent group Immunize Texas and a larger organization plan to host “legislative days” at the statehouse to educate lawmakers about the importance of childhood vaccines. And a bill is expected to soon be introduced that would make immunization rates available for individual schools, rather than just districts.
Jinny Suh, a parent who trained in biology before taking the helm of Immunize Texas, hasn’t seen much local uproar over Trump’s ties to anti-vaccination advocates.
But even in her deep-red state, the parents she works closely with have become “more willing to speak up” in support of vaccinations since Trump’s election, she said. “They are not afraid anymore.”