To understand why Pennsylvania moms die, the state needs to collect better data first

The number of women who die of pregnancy-related complications in the United States is higher than in any other developed nation in the world. In Pennsylvania, the number of maternal deaths reported to the state Department of Health rose from 9 in 2011 to 16 in 2016.

But those numbers don’t tell the full story.

“No one really knows the total number of maternal deaths in [Pennsylvania] because we have never before recorded it any systematic manner,” said Dr. Stacy Beck, a maternal fetal medicine specialist at Pittsburgh’s Magee-Womens Hospital of UPMC.

Beck is a member of the statewide Maternal Mortality Review Committee, which was created in 2018 under legislation introduced by Rep. Ryan Mackenzie, R-Lehigh. The goal is to understand exactly how many Pennsylvania women die because of pregnancy — and why.

At the moment, the committee is gathering information on maternal deaths from hospital systems across the state so it can begin a formal review. “We are also working towards securing additional funding to help offset getting other people to help abstract the data,” Beck said in an email.

But what Beck can say with certainty, based on national data: “Black women have a 4 times higher rate of maternal death than white women.”

The why isn’t so simple.

To raise awareness about this discrepancy and advocate for policies to prevent future deaths, the Atlanta-based Black Mamas Matter Alliance declared the week of April 11 to April 17 Black Maternal Health Week.

“The campaign and activities for Black Maternal Health Week serve to amplify the voices of Black mamas and center the values and traditions of the reproductive and birth justice movements,” a description on the alliance’s website reads.

In Pennsylvania, Rep. Morgan Cephas, D-Philadelphia, hosted a hearing in early April to discuss solutions to maternal mortality, with a focus on black women and access to doulas — professionals who provide guidance on pregnancy and birth.

Cephas said she first became aware of the rising number of deaths among women who had recently given birth at a roundtable with prominent female African-American Philadelphians she organized for U.S. Sen. Bob Casey, D-Pa.

A young woman brought up rising maternal mortality and asked Cephas and Casey what they planned to do about it.

“We had a blank stare,” she said.

Cephas began doing her own digging — seeing how other states are trying to address the issue — and pushed to become vice chair of the House Democrats’ Women’s Health caucus. She helped host a town hall on the subject in December with the Philadelphia Commission for Women.

“I kid you not,” she said, “it was standing room only.”

Experts point to a number of factors to explain why the maternal mortality rate is so much higher for black women in the U.S.

At the April hearing, hosted at St. Joseph’s University in Philadelphia, Dr. Loren Robinson said for black women, “the social and built environments that reinforce discrimination and racism result in an increase in … the wear and tear on the body because of constant stress.”

“This leads to declines in health over time at a different rate than those not subjected to discrimination and systematic racism,” Robinson, a state Health department deputy secretary, said in prepared testimony.

Beck, of UPMC, agreed that there’s an implicit bias in the healthcare system that affects the care black women receive. That bias can cause some women “who experience racism and oppression” to stay away from health care professionals. “So this contributes to a fear of the health care system and further impairs adequate access to care,” she said.

Cephas said she was struck at the hearing by the rising rates of substance use disorder in women who have given birth. That opened up a “rabbit hole” discussion on mental health and depression.

While Cephas said the maternal mortality rate is “extremely alarming,” she added that “one of the good things in Pennsylvania is we don’t have to reinvent the wheel.”

Cephas pointed to states that have expanded Medicaid coverage for substance use disorder and mental health to a year after a woman gives birth. Minnesota and Oregon have also expanded Medicaid to provide reimbursement for doula care.

Doulas have been shown to reduce incidences of c-sections and negative birth experiences, according to the Mayo Clinic.

Naima Black, a community-based doula in North Philadelphia and program manager for the Maternity Care Coalition, testified in April that the kind of care she provides is part of the solution to reducing black maternal deaths.

“Women call me every day hoping for an experience that will honor and respect their autonomy in decision-making,” Black said, according to her prepared testimony. “Community-based doulas help women find their voice and their confidence and walk with them with respect.”

Black did, however, caution the lawmakers present to ensure that reimbursements for doula care allow these professionals to earn a living wage. Minnesota is considering increasing its rate.

In addition to providing certification and Medicaid reimbursements for doulas, Cephas said another possible legislative solution could include broadening the type of midwife that can be reimbursed for her services.

Cephas has met with colleagues including Mackenzie to discuss these and more ideas.

Beck, the doctor on the Maternal Mortality Review Committee, said it’s hard to say at the moment what exactly the state should do, since they don’t have all the data yet.

But in the interim, she said all hospital systems should “develop standard protocols for evaluating and treating hypertension and hemorrhage,” and institute implicit bias training. More people should also “fight for all women’s rights to affordable contraception and abortion,” she said.

Another key piece is making sure that women get the kind of care they need. For low-risk pregnancies, that may mean access to a midwife or doula. For women at a higher risk, that could mean being referred to “institutions that are more comfortable dealing with potential medical complications.”