Anti-vaccine advocates battle over narrative in West Texas, downplaying role of measles in deaths

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When Daisy Hildebrand became the second Texas child to die of measles on April 3, her physicians reported – per the state health code – the 8-year-old’s death to local officials in Lubbock where she died and in tiny Gaines County where the girl lived.

In deference to the girl’s family, who planned to bury her the following Sunday, officials determined that sharing the news with the public could wait until the following week. “There’s a protocol that is generally followed,” said Zach Holbrooks, the executive director of the South Plains Public Health District, which covers four counties, including Gaines. “We put information out in a measured, careful manner.”

But Holbrooks’ plans were dashed when the day before Daisy’s funeral, communication of her death was leaked by private channels and commandeered by a vocal, growing movement critical of vaccines. Instead of a clinical state or hospital press release, news of Daisy’s death came from the highly-charged writings of vaccine critic Dr. Robert Malone, a physician once labeled by The New York Times as a “Covid misinformation star.”

“Breaking news: Another Texas child dies a tragic death after recovering from measles,” Malone wrote in a Saturday evening post on X. The Virginia doctor directed his 1.3 million followers to a 930-word substack essay where he accuses the University Medical Center in Lubbock of mismanaging Daisy’s case and purports that she died not from measles, but from sepsis after having been ill from mononucleosis and tonsillitis. She had already recovered from measles, Malone wrote.

That announcement — and the flurry of media inquiries that came next — perplexed community health leaders who spent the weekend stumbling through a communications plan, in which they reiterated that the child had died of measles pulmonary failure.

More importantly, the revelation circumvented the wishes of the people most important in the case, Daisy’s family. Peter Hildebrand, Daisy’s father, told The Texas Tribune on Tuesday he did not know how his daughter’s death information was made public.

“I have never even heard that name before,” Hildebrand said, referring to Malone. “So he’s the reason I was sitting there [at my daughter’s funeral], having to fight media off of the church?”

It’s the latest skirmish in an ongoing war for control over the narrative around the measles outbreak, how the public should respond to it and the people who have lost children to the disease. Local public health officials, the state health department and leading epidemiologists have been encouraging vaccination to prevent measles' spread, while vaccine skeptics and the nation’s health secretary are downplaying the effects of the illness and platforming unconventional therapies.

The mixed messaging is an added headache to local health departments — along with the expected cuts in the state’s already meager public health resources — and threatens to push the end of the outbreak even further.

“It’s just so tough to see all of this,” said Dr. Sara Safarzadeh Amiri, chief medical officer for Odessa Regional Medical Center and Scenic Mountain Medical Center. “The misinformation is making it even more confusing [for parents] to make the right decision for their child.”

During the first three months of this year, 60% more measles-mumps-rubella vaccines were administered in the South Plains and Panhandle areas compared to the same time period last year, according to the state’s immunization registry that a minority of Texans opt into.

But, as some have sought more vaccinations, others seek dubious treatment methods. At least one Lubbock hospital has treated some pediatric measles patients for vitamin A toxicity after U.S. Health and Human Services Secretary Robert F. Kennedy, Jr., promoted it. The steroid budesonide typically used for asthma and the antibiotic clarithromycin, both of which Kennedy touted for healing “300 measles-stricken Mennonite children” are not evidence-based treatments. And public health officials say they face escalating threats from conspiracy theorists sowing doubt about the MMR vaccine, the only effective way to prevent the virus.

Two shots of the MMR vaccine are 97% effective in preventing the virus. Measles is most actively spreading in pockets of Texas where vaccination rates fall below 95%, the threshold needed to build herd immunity. Gaines County’s kindergarten vaccination rate is about 82%.

The outbreak will continue until everyone who is susceptible has been infected or gets vaccinated, Dr. Amesh Adalja, senior scholar at the Johns Hopkins Center for Health Security said during a press conference last week.

“If people are forgoing the vaccine because they think these treatments will work for them, that’s misguided,” Adalja said. “The fact that they are being mentioned by Kennedy is tactical on his part.”

Recasting the measles deaths

Malone is one of several medical practitioners who amassed a large online following during the COVID-19 pandemic, when he cast doubt on the safety of vaccines on podcast interviews, public demonstrations and on X, formerly Twitter, which at one point barred him for violating the platform’s misinformation policy.

From his Virginia home, the infectious disease researcher has been watching the Texas measles outbreak with intense interest. He said in a phone interview with The Texas Tribune that media outlets choosing to highlight Texas’ outbreak among the many that are occurring worldwide is a “coordinated fear campaign.” And that campaign, he said, also aims to cast blame on Kennedy, who was confirmed as health secretary amid the outbreak.

“There are statements that RFK was somehow responsible for the outbreak,” said Malone, who Kennedy has defended against criticism. “This is political propaganda.”

Malone said he received an anonymous tip about Daisy’s death and then learned more about her case from a doctor who was “close to the family.” Malone declined to name that doctor but said the physician was not involved directly with Daisy’s care at the hospital.

Malone said he transcribed those doctors’ notes and published the transcription to his millions of Substack followers on Saturday, the day before Daisy’s funeral. “That was a hot take,” Malone said. “The wishes of the family were to get this alternative narrative out — the true narrative to counter the false narrative.”

Hildebrand told the Tribune he didn’t want Daisy’s death revealed to the public before the funeral.

On the same day Malone broke the news of Daisy’s death, Kennedy’s staff was quickly scheduling an unannounced trip to Seminole, the county seat of Gaines County, to attend Daisy’s Sunday funeral.

In Gaines County, Kennedy raised doubts about the safety of the vaccine, telling Daisy’s father, “You don’t know what’s in the vaccine anymore,” The Atlantic reported. Hildebrand told the Tribune he appreciated the secretary paying his respects to his family.

It wasn’t until the day after Malone broke the news of Daisy’s death that health officials in Lubbock and the state offered a public statement confirming the child’s death by measles.

“The child was receiving treatment for complications of measles while hospitalized,” the release from University Medical Center stated. “It is important to note that the child was not vaccinated against measles and had no known underlying health conditions.”

By then, the campaign to plant doubt about what Texans were being told by the medical community about the two children’s deaths was already underway.

Anti-vaccine group’s influence

For months, Children’s Health Defense, the anti-vaccine nonprofit Kennedy founded but stepped away from after becoming the nation’s health secretary, had been generating news articles and videos about measles, pointing to outbreaks in highly vaccinated communities and amplifying possible side effects of the MMR vaccine, which are generally mild.

Leaders of the organization’s broadcast arm visited Gaines County to interview the parents of six-year-old Kayley Fehr, the first child to have died from measles in a decade. The Mennonite couple told CHD they stand by their decision to not vaccinate Kayley or their four surviving children who recovered from measles. CHD-TV Chief Scientific Officer Brian Hooker also casts doubt on Kayley's cause of death, insisting that she had a bacterial pneumonia that doctors could have treated differently.

CHD’s video also lauded the work of Ben Edwards, a Lubbock doctor who CHD says has successfully treated many positive measles cases with unconventional therapies, including vitamin A, which can’t prevent measles but can be used as a supplemental treatment. Attempts to reach Edwards for comment were unsuccessful.

By late March, Covenant Children’s Hospital had treated several unvaccinated measles patients who suffered from vitamin A toxicity. Some of those patients had reported using vitamin A to prevent measles, chief medical officer Dr. Lara Johnson said in a statement.

On the day of Daisy’s funeral, Kennedy posted on X a photo of himself with members of the Mennonite community along with Edwards and Odessa doctor Richard Bartlett, writing that both physicians have “treated and healed” Mennonite children using budesonide and clarithromycin. Neither method has been scientifically proven to successfully treat measles.

On Wednesday, Children’s Health Defense uploaded a video with vaccine critic Pierre Kory, whose medical certifications were revoked last year for spreading “false or inaccurate information,” claiming Daisy’s medical records show she died by medical error, not by measles.

“They are scaring people into getting a very dangerous vaccine and scaring people in what is a very benign case,” Kory says.

Kennedy made similar claims in an exclusive CBS interview, saying Daisy died from a bacteriological infection and not measles. He also used the interview to plug his effort to get the CDC to study the risks of vaccines. Kennedy has repeatedly suggested there’s a link between vaccines and autism even though more than two dozen studies found no such connection.

On Monday, CHD published an interview with Daisy’s father who detailed how his daughter had been sick in recent weeks and worsened after a family trip to Mexico. Hildebrand said Daisy was initially diagnosed with strep and mononucleosis but sent home at least three times by three hospitals: first at Exceptional Community Hospital in Lubbock, then at nearby Covenant Children’s Hospital and finally, University Medical Center where she returned and died, Hildebrand told the Tribune.

With prompting by CHD, Hildebrand agreed with the nonprofit group’s assessment that hospital physicians were too focused on her vaccination status and measles diagnosis and less on other causes that they believe led to her death, including a bacterial infection.

“I feel that if they cared the way they should that my daughter would still be here,” Hildebrand told CHD-TV, adding that he does not believe his daughter died of measles.

“The measles don’t kill people,” he said. “These foolish doctors are the ones that kill people.”

The two Lubbock hospitals declined to comment on Daisy’s case, citing patient privacy laws.

How misinformation took hold in West Texas

Since the first measles cases were reported, there’s been little in the way of public statements from elected officials about it and the void has been quickly filled by those who believe vaccines are unsafe, like Children’s Health Defense.

By late February, the number of cases had hit the 124 mark, and a 6-year-old Mennonite girl, later identified as Kayley Fehr, had died. Still, Texas elected officials offered little reaction other than to point the blame at undocumented immigrants crossing Texas’ southern border.

State health officials have not yet confirmed how measles arrived in Texas.

Since the first measles death, state and federal staff and resources have been sent to the region to assist with vaccinations and testing. On most days, attendance at those clinics is minimal, according to local health officials. “I’ve driven by a few times and there’s nobody there,” said Collin McLarty, chief executive officer of Yoakum County Hospital.

Gaines County, where most of the cases have been reported, is also home to a large community of Old Colony Mennonites, a conservative religious group that speaks Plautdietsch, a Low German dialect. They do not formally shun immunization but many do not opt to vaccinate. For decades, health officials in the region have had to rely on the members or former members of the religious community to help translate medical information for the group, making vaccination outreach even more difficult.

Meanwhile, state funding for immunization and outreach — which is mostly performed by public health departments — has remained stagnant in Texas. According to The Associated Press, Lubbock receives a $254,000 state grant each year for immunization efforts. That number has not increased in 15 years. In 2023, Texas spent only $17 per person on public health, among the lowest in the country, according to the State Health Access Data Assistance Center. A decade ago, it was $19 per person.

Buoyed by the general public’s weariness with pandemic-era mandates, the state’s most politically active critic of vaccine mandates — Texans for Vaccine Choice — continues to strengthen. More than a dozen bills it supports are before the Texas Legislature, including those that would make it easier for residents to obtain exemptions to required childhood vaccinations to attend schools, as well as measures that would put more requirements on medical professions before a vaccine is administered.

Resident caught in the communication crossfire

Even residents in the outbreak area working to keep neighbors safe find themselves caught in the vaccine-choice crossfire.

On Feb. 25, the Gaines County Public Library posted a notice on its Facebook page asking their patrons to “kindly” remain at home if they had been exposed to measles or were unvaccinated. Within hours, vaccine critics, including Texans For Vaccine Choice President Rebecca Hardy, hurled criticism at the library.

“This is NOT okay” Hardy said on her own Facebook page, reposting the library’s notice. “Public services should be available to the entire public, regardless of their conscientious choices. Correct this immediately.”

Sabra Hall, the library’s director, was shocked at the backlash. She had the notice pulled down within five hours.

“The majority of the comments were from people who didn’t even live here,” Hall said. “It blew my mind.”

Nearby, the director of Andrews County Health Department Gordon Mattimoe, has faced similar backlash in recent weeks when he shared information on Facebook about vaccination clinics.

“You’ll have people from El Paso or faraway places that are just anti-vaxxers post comments to what we post,” Mattimoe said. “I try not to read the comments.”

On three separate occasions, Mattimoe said, he and his colleagues received threatening telephone messages from unknown callers who posit conspiracy theories that the MMR vaccine causes autism, a claim that study after study has debunked.

The misinformation feels like deja vu for Mattimoe, who recalled conspiracy theories thrown around online during the COVID-19 pandemic. Back then, Mattimoe would call out inaccurate Facebook posts and offer links to valid information.

But that’s too time consuming for battle-weary Mattimoe, who said he’s just letting things slide to focus on pushing out the truth and treating people who want his help.

“It can be discouraging,” he said. “But we keep our heads up.”

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