Maternal health advocates operate in the dark as Texas stalls data
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Nakeenya Wilson knows first-hand the trauma of complicated pregnancy.
All three of her children were born after she developed preeclampsia. The condition is a potentially fatal condition that causes high blood pressure and kidney damage, disproportionately endangering black women like herself.
That experience is part of the reason Wilson joined the Texas Maternal Mortality and Morbidity Review Board to investigate the causes of pregnancy-related deaths and find ways to stop them. It broke her heart to learn that New York’s health officials were delaying the release of the first major state death toll in nine years.
detail: Texas delays release of maternal death data until after midterm elections
“It’s important every day, every month, for people whose lives are at stake in a state where reproductive justice change is so important,” Wilson said, adding that she and others are “using this data.” We were on the edge of our seats to get.”
Health officials say they need more time to complete the work, and plan to release the findings next year after the midterm elections are approaching, possibly after the Texas legislature’s biennial meeting. Under state law, the state Department of Health Services was required to issue a report on the September 1 review covering pregnancy-related deaths in 2019.
Instead, legislators will convene in January using the same old data that has been kept for almost a decade since 2013. Texas is one of her 10 countries with the highest maternal mortality rate, according to national estimates that track outcomes during pregnancy or within the first year after giving birth.
The last-minute delay enraged maternal health experts who have pressured states for years to update the slowness of the data review process. Some members of the committee, which meets more than a dozen times each year, say they were not given advance warning of the announcement because it takes months to draft the report.
Problem focus: American Heart Association Committee Discusses Texas Maternal Mortality Crisis
Some lawmakers also said they lack the resources to complete timely evaluations and that reviews are released only after all possible pregnancy-related deaths have been investigated, according to the Texas Health Service. We were not convinced by an explanation from Dr. John Hellerstedt of the Committee. The agency regularly issues reports with preliminary data to inform public health responses more quickly.
About counting in 2019, As of early September, 118 of the 149 reviews had been completed. In 2013, 70 of his 175 potential cases were determined to be pregnancy-related.
Neither Hellerstedt nor the government agency have fully explained their decision to postpone the report for nearly a year, but the state hopes to work more closely with others on data collection to produce a more comprehensive report. said that
“Reviewing and publishing data on a year-round basis is standard public health practice and will ensure that state leaders and the public have the most complete picture of maternal mortality in Texas. ‘” Hellerstedt wrote in a letter to the government on Sept. 2. Greg Abbott explaining the decision.
Investigating fatalities is a labor-intensive process, requiring committee members to compile thousands of pages of medical records before reviewing each case. But Congress has added millions of dollars to the review board’s work in recent years, and in 2019, the agency announced a $3 million federal grant to dig into that year’s pregnancy-related deaths. Under the terms of the grant, the state was to complete the review within two years of each death.
“So I was a little confused,” said Rep. Armand Wolle, a Houston Democrat and one of several lawmakers who helped update the Maternal Deaths Commission’s charter in 2017. . Currently, the state has about 12 students at North College under contract. Texas Health Science Center for editing.
“I understand the UNT work is hard, but again, I knew it was going,” he said. “Resource issues were never an issue.”
Health agency spokesman Chris Van Deusen said money wasn’t the only issue.
“The purpose[of the grant]is to provide states with a credible source of funding for their review of maternal death cases and to support the work they are doing, not to speed up the review.” he said.
Unlike data collected by the Centers for Disease Control and Prevention, state review boards dig deeper into the medical and non-medical factors contributing to death and recommend targeted solutions. can do. Also, many states look longer from conception to 1 year postpartum, unlike the CDC, which only looks at up to 42 days of age.
Marsha Jones, executive director of the Afiya Center, a reproductive justice organization in North Texas, said past Texas reports suggested her team would advocate expanded Medicaid coverage and other interventions for new mothers. said it helped. This group focuses on black women who die from pregnancy-related causes at three times the rate of non-black women.
“Not only were we able to say, ‘This is happening, a black woman is dying,’ but we had the data to prove these stories,” Jones said. It brought value to what we said, and it allowed us to have these very effective conversations with legislators that we could push forward.”
A failed attempt at a new model
Texas has a particularly lengthy review process for pregnancy-related deaths. This is also to address miscalculations that relied on incorrect state data for 2016, which overstated maternal mortality rates. That finding was later revised, but still indicated that black women had a higher risk of dying during or after pregnancy.
To avoid conflict with state law, DSHS compiles all provider name records prior to board review. “
UNT students spend an average of 46 hours per case combing through all possible information that could identify the provider or hospital involved. According to the health agency, more than a third of his funding for the 2019 review went to editing.
A big reason the existing reviews have been updated only through 2013 is that they have been heavily edited. The 2019 grant was supposed to advance the state in understanding the current state of maternal health.
That same year, State Representative Sean Thierry (D-Houston) introduced a centralized death register law that allowed hospitals across the state to upload their redacted records. It’s not as detailed as the current review, but it will help ensure states know who’s dying each year and help policymakers begin to understand why.
In response to the backlash that it would be difficult to create a registry in two years, Thierry watered down the bill and instead set up a workgroup to study the creation of a registry. It was never voted in the Republican-controlled House of Representatives. She introduced the same bill in 2021, but lawmakers said they ran out of time to pass it in the final hours of the session, and Thierry plans to try again in January.
“A good portion of the process will be cleaned up,” Thierry said, citing California as an example.
California has been using an online data registry since 2018 to filter biostatistics and patient-level data to link pregnancies and deaths, some of which are being investigated in more detail by the review board. . Connie Mitchell, Ph.D., deputy director of the California Department of Public Health’s Center for Family Health, said having more up-to-date data could help the state focus its public health response on targeted areas such as complications from high blood pressure. I said I could.
Since 2006, the state has dramatically reduced maternal mortality.
“Getting as much information as possible, reliably identifying all fatalities, and keeping those who care about this informed and engaged with them has been critical to our success. .
Thierry, who has had a dangerous delivery herself, said she plans to draft a letter to Hellerstedt in the coming days demanding the release of the report. Her agency is bound by law to release it, she said.
Hellerstedt will retire at the end of the month.
Wilson, meanwhile, is driven by her nightmarish experience to continue without new data.
Six years ago, a nurse rode her and pushed her abdomen so she could give birth to her second child. Her unborn son was trapped inside her pelvis, a condition known as shoulder dystocia, and hospital staff took aggressive action to retrieve him.
When he appeared he wasn’t breathing and Wilson started bleeding. The situation got worse, she said. A disjointed response from her nurses prevented her from being given adequate care immediately.Her baby recovered quickly and she was eventually discharged from the hospital. She remained hospitalized away from her newborn to recover.
“There was no joy,” Wilson said when she found out she was pregnant for the third time. “Because I was afraid to die”
julian.gill@chron.com
jeremy.blackman@chron.com
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