Texas Task Force That Reviews Pregnancy-Related Deaths Losing Advocate Role


In September 2022, just three months after the Supreme Court overturned Roe v. Wade and two months before the midterm that would pit Gov. Greg Abbott against Beto O’Rourke, the state of Texas decided to delay publication of a report on pregnancy-related deaths.

Nakeenya Wilson was outspoken about the ramifications of that decision, urging the state to publish the report. As a community advocate and member of the Texas task force that contributes to the report, she was quoted in the first news story about the delay, saying, “we run the risk of disenfranchising some of the most vulnerable in our state.” Later that week she told The Texas Tribune, “When we bury data, we are dishonorably burying each and every woman that we lost.”

Now, though Wilson is only halfway through a six-year term on the Maternal Mortality and Morbidity Review Committee (MMMRC), she may be removed from it. A law passed last legislative session added new seats to the committee for doctors – to the delight of lawmakers on both ends of the political spectrum – but a late-in-the-game edit also changed the description of Wilson’s seat on the committee. The “community advocate” role is now for a “community member” with experience in a “health care field.” The new language is vague, but she fears it was created partly so she could be booted from the task force.

Wilson was required to reapply for a seat on the committee this fall and doesn’t know when she’ll hear back about her removal or selection. The MMMRC will meet Friday, March 22. She hopes to learn more then.

Dying Moms and Delayed Data

Texas’ high maternal mortality rate has been a persistent problem. The state’s maternal mortality rate more than doubled between 1999 and 2019, per a study published last year.

After a dramatic increase in reported maternal deaths in the early 2010s, the state’s MMMRC started its work in 2014 with the purpose of shedding light on pregnancy-related deaths in the state. This committee doesn’t just analyze data – the group breaks into subcommittees and reviews the case of each Texan who dies during or shortly after pregnancy in a given year. Together, they determine whether pregnancy played a part in each case and whether deaths might have been prevented.

“Doctors are trained, and they deal with hard things like this a lot. But I’ve seen more tears from doctors in the time that I’ve been on this committee than I could ever have imagined,” Wilson told the Chronicle.

Wilson has cried plenty, too. She sees herself in many of the people whose deaths they review. She describes herself as a “near-miss” because of the traumatic birth of her son. When the case they’re reviewing is missing information, or doesn’t include perspective from the dead mother’s family members, Wilson said her firsthand experience helps the committee look in the right places. “Because I’ve been there, I know,” she said. “I’ve seen lots of situations where women voiced being in pain or having specific symptoms, and they were dismissed.”

Every two years, the committee puts out a new report capped off with a list of general recommendations.

But the last time the state’s biannual review of maternal deaths was scheduled to publish, it didn’t on time. The report, slotted for Sept. 1, 2022, looked at cases from 2019, and it would reveal some disturbing facts: Among them, that about nine in 10 pregnancy-related deaths in Texas were preventable, that discrimination contributed to more than one in 10, and that about one in three were violent (and most of those were caused by firearms).

That September the Houston Chronicle broke the news that the Texas Department of State Health Services was planning to delay publishing the report until after the midterms and 2023 legislative session, and some lawmakers suggested the delay was politically motivated.

In early November, when the report still hadn’t been published and the session was two months away, Wilson worked with the Texas Women’s Health Caucus to organize a rally at the Capitol on Día de Los Muertos to spotlight the hold up. “Nakeenya’s work was instrumental in ensuring that there was enough press coverage and political pressure to get that report released in a timely fashion,” said state Rep. Donna Howard, who chairs the Women’s Health Caucus.

A few days later, the Society for Maternal-Fetal Medicine threatened to sue. Their attorneys from Democracy Forward wrote to the state, saying withholding the data was illegal and the medical society’s 5,500 members, including nearly 450 physicians in Texas, needed the information immediately. The report was ultimately published the following month, in December 2022, before the legislative session.

“One of the key champions of efforts to ensure that people in the state of Texas and our lawmakers had access to that data was Nakeenya,” said Skye Perryman, a lawyer who heads Democracy Forward. “We definitely saw her leadership at that time.”

One of the MMMRC’s recommendations in the report was to provide new moms with health insurance. Rep. Howard believes the report’s publication prior to the legislative session was a critical factor in lawmakers approving an expansion of Medicaid coverage to moms 12 months postpartum (in House Bill 12).

Changing the Task Force

The new law that has Wilson worried didn’t just affect her role. Its primary purpose was to expand the committee. The version of the bill that the House approved in April 2023 added to the MMMRC one more community advocate role identical to Wilson’s and three new seats for physicians with specific specialties (anesthesiology, cardiology, and oncology).

The version that ultimately passed the Senate, though, changed the definition of the two community roles, replacing the phrase “community advocate” with “community member,” and adding that people in the role must come from “a relevant health care field, including a field involving the analysis of health care data.”

“My concern about the changing of requirements for the community position from 'community advocate’ to 'community member’ is that we run the risk of silencing community voice and those who are most impacted who are truly not connected to medical systems,” Wilson said. “That eye is critical. You know, when we’re reviewing cases, it helps us to see a perspective that is extremely valuable.”

The bill, HB 852, was authored by state Reps. Shawn Thierry, D-Houston, and Tom Oliverson, R-Cypress, and sponsored by state Sen. Lois Kolkhorst, R-Brenham, who has been a leader guiding maternal health policy in the state. In 2017 she authored a bill to keep the MMMRC operating. Kolkhorst consistently opposes abortion access, while working to expand mothers’ health care in general. In 2021 she authored the bill signed by Gov. Abbott to expand Medicaid coverage to moms six months postpartum, and, when the state did not implement that six-month expansion, she sponsored HB 12 to provide new moms with a year of coverage.

“I believe that the overall changes to the MMMRC are positive and will result in a more well-rounded review of maternal death cases in Texas,” Rep. Howard said. “However it’s unfortunate that the bill eliminated the community advocate position because that person was instrumental in holding the MMMRC accountable and providing the committee with an honest perspective driven by lived experience.”

Original Article