Protection vs. privacy: Parents of at-risk kids urge lawmakers to release schools' immunization rates
Originally published in the The Dallas Morning News
AUSTIN — Riki Graves remembers how scared she was when her daughter received a heart transplant at just 17 days old at Texas Children's Hospital in Houston. Her baby was the youngest person to ever receive a heart transplant at the hospital.
Already fighting a breast cancer diagnosis she received while carrying her daughter, Graves and her husband called Juliana's transplant a miracle.
But as Juliana approaches her third birthday this week, the Graves family fears for her health again. Juliana is about to apply to prekindergarten and can't receive vaccines for certain diseases because of her heart transplant. Because Texas doesn't release immunization rates at the school level, her parents worry they could send their daughter into a potentially lethal situation.
Texas releases immunization rates only at the district level, which can cause clusters of unvaccinated children to form without being reflected in data released to the public. Parents have to file an open records request with their district to see rates at the individual school level.
But two "parents' right to know" bills making their way through the Legislature would require the government to disclose immunization rates at schools. House Bill 2249 from Rep. J.D. Sheffield, R-Gatesville, and Senate Bill 1010 by Kel Seliger, R-Amarillo, would allow parents to choose schools based on immunization rates.
In 2016, nearly 45,000 Texas students in grades K-12 had nonmedical immunization exemptions, a 1,700 percent increase from 2004. Denton and Travis counties have the state's highest rates of non-immunized children in public schools. Some experts fear this could cause a larger health crisis.
"We're very concerned," said Rekha Lakshamanan, policy director for the Immunization Partnership, a vaccination advocacy group. "We're seeing this rising tide of more children being exempted from immunization. Our concern is, as more and more exemptions occur, then we're really putting our state at risk for a vaccine-preventable outbreak someplace in Texas."
A cluster of unvaccinated children was revealed in Johnson County in December 2016 when a mumps outbreak, the worst in years, infected nearly 30 people, mostly school-age children.
Graves worries that sending her daughter to school could make her one of those cases.
"Kids like her that are immuno-compromised need to be protected by the herd," Graves said. "As a transplant kid, she already has so many challenges that she’s facing. It’s not fair that she doesn't get to go to school, either."
Juliana can't attend a school with an immunization rate under 95 percent. Even with a 92 percent immunization rate, Graves said, she would send her daughter elsewhere.
The situation highlights how the debate on vaccinating children has turned away from whether vaccines are safe, to whether there is a right to transparency about who is immunized — and who isn't.
"Education is key, because I don't think a lot of families are educated on what the outcome of not getting a vaccine is versus how having a vaccine can save your children," said Patsy Schanbaum of Austin, an immunization advocate who almost lost her daughter, Jamie, to meningitis. Jamie lost both legs below the knee and all of her fingers after contracting the disease as a sophomore at the University of Texas.
"It's knowledge, and knowledge is a huge component," said Schanbaum, who said she was unaware of the risks of not vaccinating her child before sending her to college. The family helped pass the Jamie Schanbaum Act in 2009, authored by Rep. Sarah Davis, R-Houston, which requires college students to have meningitis vaccinations.
Last month, the Immunization Partnership brought medical professionals and grass-roots activists to the Capitol to meet with lawmakers about the legislation.
“Parents have a right not to get their kids vaccinated, but the kids don’t have an individual right to expose other kids whose parents don’t want to assume that level of risk," Seliger said.
Seliger said he's optimistic the bill will pass and rejects any notion that school-level transparency could lead to backlash against students.
"It's not designed to single anybody out at all. It’s about lots of kids," he said. "It’s a public health issue."
The Texas Department of State and Health Services found 100,000 cases of vaccine-preventable diseases from 2005 to 2015, which resulted in over 1,100 deaths.
"None of this legislation takes that right away from parents to immunize their child or not," said Jason Sabo, who handles government relations for the Immunization Partnership. The bill will not only give parents another data point when selecting schools, but it will also give immuno-compromised kids a safer option, he said.
"All they're asking is not to play Russian roulette when they're picking their child's school," said Sabo.
Dallas ISD hasn't received a significant amount of open records requests for immunization rates, spokeswoman Robyn Harris said. The Dallas Morning News requested the data for Dallas-area schools last year.
For many, it's a time-consuming and tedious process.
"It was definitely slow," said Ariel Zimmerman, a mom from Leander who was scouting preschools for her 3-year-old son. "It was more than a couple of days before they responded, and each time I had a question, they were very not helpful."
After a month of correspondence with Leander ISD, Zimmerman was told she would have to pay for the information about immunization rates in person during specific hours, a hard sell for a single mother who works full time. She said she wants lawmakers to release the data so parents can make informed choices.
"There's a responsibility as a community," Zimmerman said. "I'm lucky that my son does not have any health issues where he wasn't able to get vaccinated, so he's doing his part for his peers, and I would hope that other people would be."
For parents like Graves whose kids do have health issues, knowing school immunization rates could make a difference.
"I can't take the chance," she said. "I've been in the hospital too many times, and I've been in the ICU, and I don't want to get back there.
"My child is here because of a miracle. I don't think there will be many more miracles for us."