'This is not a new crisis': What's being done to save the lives of black mothers

No woman is turned away from Commonsense Childbirth in Orlando, Florida, no matter her financial status or prenatal risk factors. This open and easy access to prenatal care is just one of the elements of midwife Jennie Joseph’s goal of improving the survival of mothers and their babies.

It’s a method of care that has led Joseph, 59, an internationally-trained professional midwife, to become one of the rising voices in the demand for change in maternal health, especially for mothers of color.

"There is no reason we won't let you in the door, period," Joseph said. "You could be uninsured, no money, homeless, 35-weeks pregnant, whatever. We will see you."

Moms in America are dying before, during and after childbirth at rates far exceeding other developed countries. The statistics are more dire for African–American women: In the U.S., the risk of pregnancy-related deaths for black women is 3-4 times higher than white women, according to the Centers for Disease Control and Prevention. And their babies are at risk too: Infants born to African-American mothers are dying at twice the rate as infants born to non-Hispanic white mothers.

Over the last year, numerous reports have brought the tragedy of maternal deaths in America to the center of research and new legislation. But Joseph knows it beyond the statistics.

"This is not a new crisis. This has been here. It's just never been taken care of," she told TODAY.

None of this attention has helped to change the alarming statistics — yet. But there are women in the maternal health community nationwide who are taking action now through research, advocacy, policy change and efforts to improve the basic standard of care. Their hope is to create lasting, life-saving change for future mothers.

Just how long will it take?

As a practitioner in Florida, Joseph sees the issues with prenatal care daily — and her frustrations are evident. Her mission is to raise awareness and call out one of the largest issues relating to African-American mothers: racism.

"Many of the studies, research will come up with, oh, well, black — being black is a risk factor. No. Racism is a risk factor," Joseph said.

"I feel strongly about how we are, as women, treated in a system where we don't know what to ask. We haven't got a voice. We're not heard. Black women, especially, are not heard. Native women — Hispanic women, Latinas, any woman who is other is not heard. The system is not set up to hear her," Joseph continued.

Joseph has recently spoken at panels at South by Southwest and at the Center for American Progress, highlighting how racism and the health care system work to disenfranchise African-American women specifically. Pointing to her method of care, "The JJ Way," she is hoping to raise awareness that simple changes can have lasting results.

Joseph has been practicing in Orlando since 1994, when she opened a home birth practice. A few years later, she wanted to see a more diverse population, and opened her first easy access clinic in 1999.

Joseph's vision has been focused on providing care to women who were under served or unable to pay for proper prenatal care.

Over the years, she developed "The JJ Way" as a standard of care for pregnant women. In 2007, the Health Council of East Central Florida analyzed outcome data for 100 low-income clients of Joseph's practice. Results found that Joseph's practice of patient-centered care improved the percentage of low-birth weight and preterm babies, all while keeping the mothers healthy too. A further analysis of her program funded in 2016 by the West Orange Healthcare District showed that following The JJ Way resulted in the elimination of health disparities in preterm birth outcomes and reductions in low-birth weight babies in at-risk populations.

Her method has four parts:

1. Access: No woman who is in need of services is ever turned away, regardless of insurance or financial situation, citizenship or perinatal risk status.

2. Connection: The connection of women to services and support begins at the first visit. The patient’s family or supporters are invited to participate in the prenatal care process.

3. Knowledge: Information is delivered to patients in a way that is culturally-responsive to their needs and enables them to make decisions about their treatment at a pace that feels safe to them.

4. Empowerment: Empowerment results from having access to high-quality, cost-efficient services, and a connection to support which leads to an increase in knowledge, agency and self-determination.

"It doesn't cost any money," Joesph said, referring to her model of care, which is in the process of being adapted by a handful of maternal health providers. "It's an agreement that we are here only to center the mother. We're here only to get that full-term healthy baby that she's looking for ... We're all on the same page."

The message of "The JJ Way" is spreading.

Brittany Tru Kellman, 32, is a certified-professional midwife and founding director of Jamaa Birth Village, a pregnancy resource center for women of color in Ferguson, Missouri. In mid-July, Kellman plans to open a birthing village where they can provide direct care — and her practice will follow The JJ Way.

"The JJ Way builds a level of trust and empowerment that helps to shape the rest of a woman's life," Kellman explained. "If a woman is traumatized every time she goes to a doctor, that affects the rest of her life, and her child's care. (The JJ Way) empowers women to take the biggest push forward to pull women out of this health crisis."

While Joseph delivers healthy babies to mothers at her clinics, there are also national groups such as the Black Mamas Matter Alliance and SisterSong advocating for and sparking conversations around black maternal health.

"We envision a world where Black mamas have the rights, respect, and resources to thrive before, during, and after pregnancy," the Black Mamas Matter Alliance website states. The Atlanta group is comprised of 60 different organizations designed to advocate and drive research for black maternal health, rights and justice.

The organization grew from its “anchor” organization SisterSong, which started in 1997 to improve policies and systems that affect the lives of marginalized communities.

Monica Simpson, 35, Atlanta-based executive director of SisterSong, stressed the importance of BMMA and their goals.

“It shouldn’t matter how conservative or progressive you are. This is one of those issue areas that crosses the aisle — and work needs to be done. (BMMA) is working to build the bridge from those on the ground to folks in office,” said Simpson.

BMMA's first major project, in conjunction with the Center for Reproductive Rights, was creating the Black Mamas Matter Toolkit, a resource for anyone concerned about the health and well-being of black women and girls.

In 2018, BMMA created the first Black Maternal Health Week, which Sen. Kamala Harris introduced to the Senate as a formal resolution to bring national attention to the maternal mortality crisis.

"(It) was designed to spark a nationwide conversation about black maternal health that centered on the voices and the perspectives of the people affected by the issue," said Elizabeth Dawes Gay, 32, a co-director of the alliance. "It took so long to get the conversation about racism to come into the public space."

BMMA has also helped to provide resources and leadership to impact change.

“Senator Kamala Harris has reached out to BMMA and SisterSong for their input — there are folks who are willing to say, ‘We don’t want to do this (legislation) without them,” said Simpson. “The conversation about maternal health has shifted the microphone to those most impacted by the issue — and that is a shift we need across the board.”

The sobering statistics have led to new research into why more mothers are dying in the U.S., while rates are decreasing in the industrialized world.

"We're spending over $250 million on research that relates to maternal mortality," said Dr. Janine Clayton, the director of the National Institute of Health Office of Research on Women's Health. "It's a complex topic that requires a coordinated effort across disciplines."

She pointed to several ongoing studies:

• Heart health study: Looking at the relationship between experiences during pregnancy and cardiovascular health 2 to 3 1/2 years later.
• Chronic hypertension and pregnancy project: Evaluating blood pressure treatment strategy during pregnancy. This research is expected to be completed in 2021.
• Human placenta project: Ongoing research of the placenta, to ultimately improve health of mothers and children.

The NIH has also commissioned research on the health of women populations who are understudied, underrepresented and underreported.

Clayton acknowledges that confronting causes of maternal mortality — especially racism and the chronic stress of poverty — is overdue.

"I wish I could tell you why it took so long for (racism) to be part of this conversation," Clayton told TODAY. "Some people's voices are not heard."

Sociologist Juanita Chinn noted that it's not only obvious racial disparities contributing to black maternal deaths.

"We need to talk about solutions at the structural level — the institutions, institutional practices, policies and cultures that allow for bias to exist and take place," said Chinn, the program director in the populations dynamics branch of the Eunice Kennedy Shriver National Institute of Child Health and Human Development.

Perhaps the most powerful voices in the world of maternal health are those left behind.

Charles Johnson's wife Kira died of hemorrhaged a day after giving birth to her second son via Cesarean section at Cedars-Sinai Medical Center in Los Angeles. Nearly two years later, Johnson, 38, has become a well-known figure in the maternal mortality conversation. He testified to Congress in September 2018 about the need for better maternal health care and created an organization, 4kira4moms, focused on driving legislation for the cause.

"We know so much about the statistics — and they're horrifying," Johnson said. "My road map was to make this personal, to see beyond the statistics to the precious souls whose families need them. There is nothing that can replace these mothers."

Johnson worked tirelessly with legislators on the "Preventing Maternal Mortality Act," which became law in December 2018. It will establish a program under the U.S. Department of Health and Human Services (HHS) that may make grants to review pregnancy-related and pregnancy-associated deaths, establish and sustain a maternal mortality review committee and more.

"When I got involved, everyone told us this would never happen. They said 'Women's health issues are not a priority right now.' I took every opportunity I had to look people in the eye and say: 'This is not a women's health issue, this is a human right's issue,'" Johnson recalled.

Today, there are other bills in the works that could spur further change. In August 2018, Sen. Kamala Harris introduced a bill to the Senate, the "Maternal CARE Act," that would require HHS to award grants for training that addresses implicit bias in obstetrics and gynecology.

In September 2018, several senators introduced a bill, "Maximizing Outcomes for Moms through Medicaid Improvement and Enhancement of Services (MOMMIES) Act," which would extend coverage for pregnant women covered by Medicaid to a full year after childbirth.

"I'm inspired daily, and I'm more hopeful now that I ever have been before," said Johnson.

While there's no knowing how long it will take for those bills to move forward, Jennie Joseph feels her work is paying off.

"I'm pleased," said Jennie Joseph. "Finally, we're thinking about it, we're talking about it. We're on our way."