FORT WORTH, Texas — The COVID-19 vaccination records of at least 9.6 million Texans will be destroyed five years after the statewide public health disaster ends, unless state officials manage to contact all vaccine recipients and ask whether they want the records preserved.
“The groups of people that are going to be really, really affected are those marginalized communities that already have a difficult time accessing vaccines,” said Rekha Lakshmanan, the chief strategy officer for The Immunization Partnership.
The unusual situation is a result of state law. In most states, when a patient receives a vaccine, that information is shared with the state’s vaccine registry unless a patient opts out. But in Texas the situation is flipped: Vaccine information is automatically not stored in the state’s vaccine registry, unless the person receiving the vaccine signs paperwork to consent to sharing that information.
In a public health emergency, like COVID-19, that requirement is waived: All vaccines and treatments given during an emergency must be reported to the Texas government, regardless of whether the patient has signed a consent agreement.
But five years after the disaster is declared over, all of that information must be destroyed, unless the patients agree to preserve it, according to Texas statute.
Once destroyed, the only remaining vaccine records for those people will be the ones they’ve kept on their paper vaccine cards, or, in some cases, records at doctors offices. But for others, the information about which vaccine and booster, and when and where they received them, will be lost forever.
“That data is non-recoverable,” said Kevin Allen, the director of the state’s immunization information system, during a meeting in May of public health officials. “They can consent up to that five-year retention period, but that is what is in jeopardy.”
There is no immediate risk to anyone’s vaccine records. The timer for vaccine destruction starts when the COVID-19 disaster is officially declared “over,” which will likely be in January at the earliest.
But this is the first time that a public disaster has coincided with a mass vaccination event in Texas, leaving public health advocates hoping that lawmakers will find a way to preserve these records in the upcoming legislative session, and before the five-year timer runs out.
The looming threat of record destruction is an unusual one in the nation, because almost every other state or municipality that operates a vaccine registry has what’s called an “opt out” system. In an opt out vaccine registry, all patients are informed of their right to withhold their vaccine data from the registry. But unless patients object, the data is automatically shared with the registry.
But Texas, New Hampshire and Montana have an “opt in” system, meaning that any patient who wants their data stored at the state level must sign additional paperwork to do so.
For doctors, nurses, pharmacists, and other vaccine providers, such a system means more bureaucracy for them, they say.
“It’s more cumbersome, and it results in a lower rate of information entry into the registry, which necessarily affects its functionality and its usefulness,” said Dr. Jason Terk, a Keller pediatrician and the chair of the Texas Public Health Coalition.
A similar provision exists for children when they turn 18. If the new adults want the state to keep the records of their childhood vaccinations against measles, mumps, rubella and more, they must tell the state they want that data preserved within eight years of their 18th birthday. If they don’t, it’s destroyed.
Altogether, Texas’ existing vaccine law makes it harder for providers to know if a patient is fully up-to-date on all their vaccines, and more difficult for patients to remember whether they got a vaccine years or sometimes decades ago.
“Some consumers are going to want or need those records at some point,” said Mary Beth Kurilo, an expert on vaccine systems with the American Immunization Registry Association.
Kurilo pointed to the situation in New York state, where a recent polio outbreak has many adults scrambling to figure out whether they were vaccinated as a child. For adults whose data is stored with the registry, the answer is found pretty easily. But for others, they’ll have to locate childhood records or call their pediatrician’s office to see what vaccines they received as an infant.
“Everyone’s now looking for their polio records and asking ‘Did I get immunized as a child?’” Kurilo said.
Besides the impact on patients and health care workers, Texas’ strict vaccine laws also leaves communities with limited knowledge about vaccine uptake for other vaccines that protect against preventable diseases, public health experts said.
Because of the state emergency, researchers, public health officials, and individuals can go on the state health department’s website and look up their county’s COVID-19 vaccination rate. All data that is made publicly available is anonymous, and no individual’s data can be accessed from the registry by anyone other than a licensed vaccine provider.
But state vaccine law does allow the state’s health department to publish anonymized vaccine data that shows which parts of the state and which demographic groups are up-to-date with their COVID-19 vaccination. And which areas have lower uptake, and thus are at greater risk for preventable disease and death.
“It’s important to see who’s getting it,” Huang said. “Where are places that we need to do particular outreach, if there’s not good coverage, to address disparities?”
All of those questions are almost impossible to answer for any vaccine besides the COVID-19 vaccine. Want to know your county’s vaccination rate for seasonal influenza? Or against the human papillomavirus? Neither question can be answered by public health providers because of state law.
Next door in Louisiana, any citizen can go on the state health department’s website and see how the vaccination rate for the HPV vaccine varies by parish.
State Rep. Stephanie Klick, a Republican who represents Fort Worth, has previously supported legislation that would update the state’s vaccine registry. But not all providers are optimistic about the likelihood of changing the system during the 2023 legislative session.
“Political leadership historically has been much more concerned about privacy than public health,” Terk said.
For the COVID-19 vaccine records at risk of destruction, Texas health officials have more than five years to work on a plan to try and preserve the information.