Eight years ago the human rights organization Amnesty International declared a “maternal health care crisis in the U.S.A.” and said worst of all was the state of Georgia.
National health organizations reached out. Shaken Georgia leaders mobilized, passed legislation, and created a task force and pilot projects. And things have changed — but apparently for the worse.
The best estimate of the state’s maternal death rate is now double the one Amnesty International called out.
However, the data are still so bad that no one really knows how high the rate is. They’re just pretty sure what they have is an undercount.
“We know what we don’t know at this point,” said Diane Durrence, the women’s health director in the Maternal and Child Health Section of the state’s Department of Public Health. “Our numbers are higher (than average). Why? We don’t have the answers completely to it.”
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As the state of Georgia prepares for the 2019 legislative session, study committees are weighing changes to the state’s health care system, above all in rural health care. In spite of similar efforts in the past, Georgia continues to swim at the bottom of the barrel on several key U.S. health rankings.
That includes maternal mortality, the number per 100,000 live births of women who died during pregnancy or childbirth or in the weeks afterward. The number itself is small, but its significance is statewide, a signal of overall voids in health care.
“People in America aren’t supposed to die during childbirth,” said Dr. Karen Kinsell, an Ivy League physician who moved from New York to rural Clay County in southwest Georgia to run a clinic there.
“You go to old graveyards and see all these tombstones of women who died in their 20s. It’s not supposed to happen anymore. It’s shocking to have a death you can point to that’s due to a lack of care,” she said. “It’s shocking. It’s shocking.”
‘A rude awakening’
When Amnesty International first reported its alarm at U.S. maternal mortality, it found Georgia ranked 50 out of 50 states with a rate of 20.5 maternal deaths per 100,000 live births.
The overall U.S. rate was bad enough, at 13.3 deaths per 100,000 live births, well behind other industrialized nations. For example, an American woman was five times more likely to die in childbirth than a woman in Greece.
That report used the latest statistics available at the time, from 2006. Now, the DPH’s latest available numbers, from 2016, show a rate of 37.2 maternal deaths per 100,000. That’s worse than Uzbekistan.
DPH officials believe the real rate is probably higher.
Only last year did the state start allocating money specifically to the problem: $100,000 statewide. That went to working on better data. This year, it allocated $2 million to the problem, as part of the state’s overall health budget of $4.8 billion.
Renee Unterman, the chairwoman of the state Senate’s Health and Human Services Committee, worked to get the $2 million.
“It’s kind of ridiculous when you’re worse than the state of Mississippi,” she said. The Amnesty International report, she said, “was like a rude awakening to other legislators. You’ve got to wake up and smell the roses.”
The Annie E. Casey Foundation and other groups reached out to her and other Georgia leaders to work on solutions.
“We’re kind of pulling ourselves up by the bootstraps,” Unterman said. “This is not going to be our moniker.”
DPH officials detail the work they’re doing to turn that $2 million into fewer deaths. They’ve partnered with a national organization, AIMS, to educate hospitals that work with underserved populations.
Sixteen hospitals have received grants to work with the DPH, and more than two dozen others are participating in the project to help educate them. They get checklists saying what equipment and materials they should have on hand, and education on those tools and on better procedures.
As to hospitals that didn’t respond to DPH’s outreach, DPH can’t make them.
“We don’t know what hospitals have unless they’re participating with us in this and they’ve completed that readiness assessment,” said Durrence, the DPH official.
A big cause of death for new moms is a lack of knowledge, by both the women and their doctors, about what to look for.
Hemorrhage, hypertension, seizures and depression can all be brought on or worsened by the hormones and body changes that pregnancy brings.
Women in Georgia died after they or their health care providers didn’t understand the warning signs of their placenta breaking free, leading to hemorrhage. Or women who developed hypertension didn’t get medication soon enough during pregnancy. Or women at risk for hypertension didn’t have their blood pressure managed long enough after pregnancy. Emergency teams weren’t activated in time or just weren’t available. Or long-term seizure medication wasn’t adjusted to accommodate the pregnant body.
That’s according to a report by the committee Georgia set up to comb through the available data. But even that report has gaps. In more than a one-third of cases, the researchers don’t know when — or if — prenatal care began. They verified that a couple of the women who died had received no prenatal care at all.
One of the reasons state data collectors have been struggling to figure out how women die in or after childbirth is the way deaths are reported. The legally required way to report a maternal death is to fill out special paperwork and send it in for state tracking. But state officials know caregivers don’t always do that.
Putting a check box on Georgia death certificates to help track pregnancy-related deaths helped but also led to a number of false positives. An education project about the box has led to fewer of those mistakes. The DPH is also working on an online reporting form that should go live in a couple of months.
Much more difficult, state data experts said, is finding deceased women whose pregnancy box should have been checked but wasn’t.
Things public health experts know: Like in the U.S. overall, Georgia African-American women are vastly more likely to die from pregnancy. White women in Georgia are worse off than women in many other developed countries. Georgia’s rate is much higher than the U.S. average. Georgia’s reported rate is much worse than it used to be. The majority of maternal deaths occur after the pregnancy is over. A large portion of pregnancy-related deaths here are preventable.
The lack of attention nationally to maternal mortality, especially compared with infant mortality, became clear after the pop icon Beyoncé recently recounted her experience with pre-eclampsia in an interview with Vogue. (She called it toxemia, an old name for the dangerous condition, which is related to high blood pressure.)
Beyoncé had an emergency C-section as a result of her pre-eclampsia. Google searches for the condition spiked, and the investigative news organization ProPublica wondered what all those searchers at their keyboards had access to. It wasn’t good.
ProPublica found such shoddy information on gold-standard websites such as Harvard and Medline Plus that the websites told ProPublica they would rewrite or re-evaluate their entries. One of the key problems: The websites implied that birth cured the danger from pre-eclampsia. In fact, deaths often occur after birth, for example from stroke.
Georgia experts said it’s helpful when a high-profile person raises awareness of a disease, but the problem will outlast one person’s story. “I’m sorry Beyoncé had pre-eclampsia, but Beyoncé is not the only person who had pre-eclampsia,” said Dr. Franklyn Geary of the Morehouse School of Medicine.
Georgia is trying to get a better grasp of the problem, but answers are not coming fast.
After the Amnesty International report, the state passed legislation creating a Maternal Mortality Review Committee. That committee pores through the available death reports, culls out ones that aren’t really maternal deaths, and evaluates the data in the ones left. So far, it’s done 2012 and 2013, and it is about to produce the report for 2014. Its reports still have missing data. For example, in some cases it couldn’t be determined whether the mother had health insurance.
This year’s report on Georgia’s response to maternal mortality by the Yale Global Health Justice Partnership was called “When the State Fails.”
It called out several factors, including Georgia’s decision not to expand Medicaid to cover the poorest adults. DPH officials said they couldn’t answer the question whether the Medicaid expansion decision was part of the problem.
There are systemic issues, though.
“Committees don’t necessarily solve a problem,” said Kinsell, who is the only health care provider in Clay County. Once a patient of hers is pregnant, Kinsell needs to hand her off to an ob/gyn. “Most of our births are 60 miles from here,” Kinsell said. “I’m telling you, it is really a problem, people getting over there to get prenatal care.”
Half of Georgia counties have no ob/gyn.
“They come back,” Kinsell said, “and say, ‘The doctor said to check this, but I don’t have a ride.’ It’s like 120 miles round-trip. So they’re coming to me and like, I don’t know that much about it. So you end up checking the blood pressure, checking the protein in the urine, seeing how swollen they are. … There should be more nodes where you can get real ob/gyn care. I do pap tests, but I ain’t no baby doctor.”
One thing Kinsell stresses is that to have a healthy pregnant woman, you need women who are healthy before they get pregnant.
Early in her practice, Kinsell said, she had a mother who died, a diabetic. The woman wasn’t great about taking her medication. Thinking about that, it’s especially bitter to know that the county’s only pharmacy has just closed.
“It just kind of sucks your breath out,” she said.
Christina Simmons was lucky.
At first, the Marietta woman’s pregnancy was fine. Then it wasn’t. “I would say right at the beginning of the third trimester of my pregnancy there were some indications” of high blood pressure, she said. “I was followed very closely by my regular obstetrician and a perinatologist. I had a mild form. So my doctor prescribed bed rest and a lot of fluids and wait and see.”
Then a couple of weeks later, it became much worse. She found herself admitted to the hospital so they could wait and see there. She accepted she might be there a while.
The next day, a Saturday, she developed HELLP syndrome, a variant of pre-eclampsia that is basically a collection of symptoms including the breakdown of red blood cells that can affect the brain, kidneys and other organs. Sunday, her doctors ordered an emergency C-section.
“I think it was just shock,” Simmons said. “I don’t even think I was really scared at that point. I think I was just in shock. I think my family was more afraid. It all happened so quickly.” Simmons was afraid for her baby, who was now a preemie. Her daughter is now healthy and happy, she said.
As an African-American, Simmons was already three to four times more likely than a white woman to die by pregnancy. Some of that is likely genetic. But for others, it may be a double-whammy, since African-American women are less likely to have good access to quality health care. And those circumstances, for women of whatever race, can multiply health problems beyond pregnancy and birth for both mother and child alike.
“From my experience I feel I was so fortunate to have all these resources, all this attention,” Simmons said. “I want every woman to be able to get that.”