February 5, 2023
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Maternal health advocates in the dark as Texas stalls data

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Nakeenya Wilson knows firsthand the trauma of a complicated pregnancy.

All three of her children were born after she developed preeclampsia, a potentially fatal condition that causes high blood pressure and kidney damage, and that disproportionately endangers Black women like herself.

That experience is partly what has led Wilson to serve on the Texas Maternal Mortality and Morbidity Review Committee, examining the causes of pregnancy-related deaths and finding ways to stop them. And it’s why she was heartbroken this month to learn that Texas health officials are pushing off the release of the state’s first major count of those deaths in nine years.

IN-DEPTH: Texas delays publication of maternal death data until after midterm elections

“For people whose lives are at stake in a state that has very significant reproductive justice shifts, every day, every month, matters,” Wilson said, adding that she and others have been “at the edge of our seats to get this data.”

Health officials say they need more time to finish the work, and now expect to release the findings next year, after the approaching midterms and likely after the Texas Legislature meets for its biennial session. Under state law, the Department of State Health Services was required to publish a report on the review on Sept. 1, covering pregnancy-related deaths in 2019.

Instead, lawmakers will convene in January with the same outdated data it has had for nearly a decade, from 2013. Texas has one of the ten highest maternal mortality rates according to national estimates that track outcomes while pregnant or within a year of giving birth.

The last-minute delay has infuriated maternal health experts who have spent years pressing the state to update its sluggish data review process. Members of the committee, some of whom meet more than a dozen times each year, said they were not given advance warning about the announcement, which is unusual since the reports take months to draft.

ISSUE FOCUS: American Heart Association panel discusses Texas’ maternal mortality crisis

And some lawmakers were unconvinced by the explanation from Texas health services Commissioner Dr. John Hellerstedt that resources were too short to complete a timely assessment and that the review could only be released once every potential pregnancy-related death was investigated. The agency routinely puts out reports with preliminary data, in order to more immediately inform public health responses.

For the 2019 count, it had completed 118 reviews out of 149 as of early September. In 2013, 70 deaths were determined to be pregnancy-related out of 175 potential cases.

Neither Hellerstedt nor the agency have fully explained the decision to hold off the report for nearly a year, other than saying the state wants to better align itself with others on data collection and build a more comprehensive report.

“Reviewing and publishing data on a full-year basis is a standard practice within public health and will allow state leadership and the public to have the most complete picture of maternal mortality in Texas,” Hellerstedt wrote in a Sept. 2 letter to Gov. Greg Abbott explaining the decision.

Investigating the deaths is a labor-intensive process, requiring redactions on thousands of pages of medical records before each case can be reviewed by members of the committee. But the Legislature has added millions of dollars in funding to the review committee’s work in recent years, and in 2019 the agency received a $3 million federal grant to drill down into that year’s pregnancy-related deaths. Under the terms of the grant, the state was supposed to have the reviews completed within two years of each death.

“That’s why I was kind of confused, “ said Rep. Armando Walle, a Houston Democrat and one of several lawmakers who helped renew the maternal mortality committee’s charter in 2017. Currently, the state contracts with about a dozen students at The University of North Texas Health Science Center for the redactions.

“I understand that the UNT work is exhausting, but again, we knew that going in,” he said. “The resources issue was never an issue.”

Chris Van Deusen, a spokesman for the health agency, said funding is not the only problem.

“The purpose of (the grant) is to give states a reliable funding source for maternal mortality case reviews and support the work they’re currently doing, not to speed up reviews,” he said

Unlike data collected by the Centers for Disease Control and Prevention, state review committees are able to drill down, examining the medical and non-medical contributors to deaths, and to recommend targeted solutions. And many states look at a longer period in time, from pregnancy to one year after delivery, unlike the CDC which only examines until 42 days after birth.

Marsha Jones, executive director of the Afiya Center, a North Texas reproductive justice organization, said past Texas reports have helped her team advocate for expanded Medicaid coverage for new mothers and other intervensions. The group focuses on Black women, who die of pregnancy-related causes at three times the rate of non-Black women.

“We were not only able to say, ‘Hey, this is happening, Black women are dying,’ but we had data to prove these stories,” Jones said. “It brought value to what we were saying. It enabled us to have these really effective conversations with legislators who we could push.”

Failed attempts at a new model

Texas has an especially long review process for pregnancy-related deaths, partly in response to a miscalculation in 2016 that relied on flawed state data and showed an inflated maternal mortality count. That finding was later revised down, but still showed the higher risk of dying during or after pregnancy for Black women.

To avoid conflicts with state law, DSHS redacts the records of all provider names before the committee review.”

UNT students spend an average of 46 hours per case combing through anything that could identify the provider or hospital involved. More than a third of the funds dedicated to the 2019 review are spent on redactions, according to the health agency.

The extensive redactions are a large reason why the existing reviews are only current to 2013 — the agency hasn’t gotten to the subsequent years. The 2019 grant was supposed to propel the state forward in its understanding of the current state of maternal health.

That same year, state Rep. Shawn Thierry, D-Houston, introduced legislation for a centralized death registry, where hospitals across the state could upload redacted records. It wouldn’t be as granular in detail as the current reviews, but it would ensure that the state knows who is dying each year and help policymakers begin to understand why.

In response to pushback that it would hard to create the registry in two years, Thierry watered down the bill to instead establish a workgroup to study the creation of the registry. It never got a vote in the Republican-controlled House. She introduced the same bill in 2021, but said House members ran out of time to pass it in the final hours of the session. Thierry plans to try again in January.

“It would clean up a significant part of the process,” Thierry said, pointing to California as an example.

California has used an online data registry since 2018, filtering in vital statistics and patient-level data to link pregnancies and deaths, some of which are then investigated in more depth by a review committee. Dr. Connie Mitchell, deputy director of the Center for Family Health at the California Department of Public Health, said having more current data has allowed the state to focus its public health response in targeted areas, like complications from hypertension.

Since 2006, the state has dramatically lowered its maternal mortality rate.

“Getting as much information as we can, making sure we identify all of the deaths, presenting information to the people that care about this and then engaging them to help us has just been critical for our success,” Mitchell said.

Thierry, a lawyer who has experienced her own dangerous delivery, said she will be drafting a letter to Hellerstedt in the coming days that demands the report be made public. The agency is bound by statute to release it, she said.

Hellerstedt retires at the end of the month.

Wilson, meanwhile, will press on without new data, driven by her nightmarish experiences.

Six years ago, nurses straddled her and pushed on her stomach so she could give birth to her second child. Her unborn son had become stuck inside her pelvis, a condition known as shoulder dystocia, and hospital staff took aggressive action to retrieve him.

He was not breathing when he emerged, and Wilson started hemorrhaging. The situation was made worse, she said, by a disorganized response from nurses, who failed to immediately give her the appropriate care. The baby recovered quickly and was eventually discharged. She remained hospitalized, away from her newborn, to recover.

By the time she found out about her third pregnancy, “there was no joy,” Wilson said. “Because I was afraid of dying.”



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