The U.S. is the only industrialized nation in which the maternal death rate has been rising. Each year, about 700 deaths are due to pregnancy, childbirth or subsequent complications, according to the Centers for Disease Control and Prevention.
When someone dies while pregnant or within a year of childbirth in Illinois, that’s considered a maternal death. Karen Tabb Dina is a maternal health researcher at the University of Illinois at Urbana-Champaign who serves on a state-level committee that’s trying to figure out what’s killing these mothers.
The group’s most recent analysis found that about 75 women in Illinois die from pregnancy-related causes each year. Consistent with national trends, Black women are at greater risk than white women, and most of the deaths were preventable.
“It’s cause for alarm,” Tabb Dina said. “Our country is in a crisis in terms of unnecessary maternal deaths.”
In recent years, Illinois’ Maternal Mortality Review Committee has urged policy changes that would remove barriers to health care for pregnant and postpartum women. At the top of the list: Make sure low-income moms don’t lose Medicaid coverage after a baby is born. Some women lose coverage as soon as two months after giving birth.
In April, Illinois became the first state to be approved by the U.S. Department of Health and Human Services to extend Medicaid up to a full year after a pregnancy.
“This is tremendous,” Tabb Dina said. “One of the greatest risk factors for maternal deaths is lack of access to care: not being able to access the right providers and to be seen in a timely manner.”
Medicaid, the state and federal program mainly for low-income Americans, covers people with higher incomes during pregnancy — but most states kick these women off the rolls 60 days after they give birth. As a result, hundreds of thousands of women who’ve recently had a baby end up uninsured each year.
“Disruptions in Medicaid coverage results in higher costs and worse health outcomes,” HHS Secretary Xavier Becerra said in a press briefing in April, citing a federal report on the consequences of Medicaid churning. “More than half of pregnant women in Medicaid experienced a coverage gap in the first six months of postpartum care.”
With the extension of Medicaid under the Affordable Care Act, mothers in Illinois with incomes up to about double the federal poverty level can keep their coverage for a year postpartum. Several other states — including New Jersey, Georgia and Virginia — are taking similar steps.
Although the $1.9 trillion American Rescue Plan was passed to stimulate the economy amid the covid-19 pandemic, it also contains a less-noticed provision addressing the postpartum coverage. For the 12 states that never expanded Medicaid under the ACA, the law provides new financial incentives for them to make Medicaid available to adults with incomes up to 138% of the federal poverty level ($12,880 for an individual, $21,960 for a family of three).
In addition, the stimulus package offers all states an easier option for extending postpartum Medicaid coverage beyond the 138% income limit. Starting in April 2022, states can file a state plan amendment to their Medicaid program — a process that has fewer roadblocks to federal approval than the traditional route of applying for a federal waiver.
Maternal health experts say extending Medicaid coverage to a full year postpartum makes sense because pregnancy-related complications — physical and mental — aren’t limited to the first few months.
“Many [postpartum] health issues and health problems extend beyond the 60-day period that Medicaid is currently covering,” said Dr. Rachel Bervell, an obstetrician in Seattle and co-founder of the Black OBGYN Project, which aims to raise awareness about racial injustices in maternal health care.
A report based on data from nine states found nearly 20% of pregnancy-associated deaths happen between 43 days and one year postpartum.
Bervell clearly recalls learning about that statistic. “It was just so jarring,” she said. “It makes you worried about the 1 in 5 individuals we may be missing.”
Medicaid is the largest payer for maternity care in the United States. Black women are overrepresented in the Medicaid population and are also overrepresented among those who get kicked off their plan after 60 days.
Chronic diseases — like diabetes and hypertension — are more prevalent and less well-controlled among Black women, putting them at higher risk of pregnancy-related complications.
There are also structural barriers to health care, such as inadequate housing, transportation and child care. Many of these barriers stem from racist and discriminatory policies, like redlining, linked to worse health outcomes. Black mothers are also more likely to be denied medication for postpartum pain.
Racial disparities in maternal health outcomes are caused by racism, not race. So the problem can’t be solved, Bervell said, without addressing systemic racism in medicine and the broader society.
U.S. Rep. Robin Kelly (D-Ill.) said the racial disparities are unacceptable. She championed the state’s Medicaid change and is working on other policies to improve maternal health data collection and establish national obstetric emergency protocols.
“When you look at educated Black women with money, they still die more than less-educated, less-wealthy white women,” she said.
Kelly said she first became aware of the issue several years ago, when she met the family of Kira Johnson, a Black mother who died after the birth of her second child from obstetrical bleeding — one of the most common causes of maternal death in the U.S.
“I’ll never forget, her [older] son walked in and saw a picture of his mother on the screen. And he said, ‘There’s Mommy.’ And that just got to me,” Kelly said. “What a heartbreak."
As the rate of maternal deaths in the U.S. has ticked upward, so has the incidence of “severe maternal morbidity,” according to the CDC. Each year, an estimated 50,000 women experience dangerous, even life-threatening health complications.
Jessica Davenport-Williams, a mother in Chicago, said that, after giving birth the first time, she hemorrhaged severely and had to receive blood transfusions. She was pregnant with her second daughter around the time Serena Williams and Beyoncé were in the news because of their own serious childbirth complications.
So she advocated for herself before her next delivery.
“I wanted to make sure that every physician was well aware of my history, that they documented information in my file that would be transferred to the hospital. And I was met with resistance," she said. “They didn’t feel that it was necessary. I had to push for several appointments for that to happen.”
After her second daughter was born via cesarean section, Davenport-Williams hemorrhaged again.
“It became an emergency situation,” she said. “It just reminded me that I could have been one of those cases … that I [almost] didn’t make it.”
Davenport-Williams said her experience compelled her to become an advocate for maternal health.
“I don’t know if I will see the change for myself, in my lifetime,” she said. “But I definitely don’t want my daughters to have the same story or experiences that many before them have had.”
While extending Medicaid coverage is an important first step, efforts to prevent maternal death can't stop there, Tabb Dina said.
Health care providers need to be educated about racial inequities in medicine, she said. Screening all pregnant and postpartum women for mental illness and making sure they get treatment will also help save lives.
And more patients with experience need a seat at the table in policy discussions, she said.
“We need to understand the real lived stories of our ‘near misses,'” Tabb Dina said. “What were their barriers? What were their complications?"
And then ask: What more needs to change so no child has to grow up without a mother whose death could have been prevented?
This story comes from a reporting partnership with Illinois Public Media, NPR and Kaiser Health News.
This article was reprinted from khn.org with permission from the Henry J. Kaiser Family Foundation. Kaiser Health News, an editorially independent news service, is a program of the Kaiser Family Foundation, a nonpartisan health care policy research organization unaffiliated with Kaiser Permanente.