ABOVE PHOTO: JENNÉ JOHNS, U.S. REP. DWIGHT EVANS and Jaye Wilson take a photo at the end of the panel session. (Photo/Amy V. Simmons)
By Amy V. Simmons
At a time that should be full of anticipation and joy, a pregnancy ending in premature birth can turn that joy to anguish for many parents.
Having to face the heartbreak of having to leave a fragile, vulnerable child hooked up to monitors in a strange setting and unable to express discomfort is also extremely stressful and frustrating. Going through this experience is devastating and stressful enough for any family.
But in the case of many Black families, being vulnerable to high-risk pregnancies and not receiving proper holistic care throughout the journey is equally distressing.
These topics were addressed during a panel discussion titled, “Black Maternal and Neonatal Equity: Driving Solutions Through Policy, Advocacy and Lived Experiences,” which was co-sponsored by U.S. Rep. Dwight Evans (D-3rd Dist.) recently at the Congressional Black Caucus Foundation’s 51st Annual Legislative Conference (CBC-ALC) at the Walter E. Washington Convention Center in Washington, D.C. — the first in-person gathering of the group since 2019.
Evans has been actively addressing this issue for many years.
“I came to the Congress on a mission to be on the Ways and Means Committee in the Subcommittee on Health,” Evans told the session’s attendees. “I represent the city of Philadelphia in the state of Pennsylvania. …I knew when I got to Washington, this was what I wanted to do [focus on health care disparities]. I knew disparity was a huge issue because of the environment we are in, particularly for Black and poor Latino women.”
People must vote in November’s general election to keep issues such as these at the forefront — the current policy achievements or discussions are not guaranteed to continue in the next Congress or state house, he said.
“This November, don’t take it for granted. …don’t just assume that something will happen,” Evans said. “You’ve got to be active about it.”
For more than a decade, Jenné Johns, MPH — a Philadelphia area resident and one of the session’s two panelists — has advocated for policy changes that improve health equity and health outcomes for low-income populations.
Additionally, Johns has been responsible for quality improvement and health equity transformation strategies with some of the nation’s largest health insurance companies.
Yet, despite being a medical professional and advocate herself, Johns and her family were thrown into a maelstrom of uncertainty and confusion when her son was born prematurely in 2014.
“We experienced a turbulent, traumatic and inequitable three months journey through the neonatal intensive care unit, and quickly became [the family of] the one in five black babies born prematurely in this country in which my education, my income, insurance status were not protective factors,” she said.
Johns turned this traumatic ordeal into advocacy for other families who had experienced the same, and wrote, “Once Upon a Preemie,” a children’s book written specifically for parents of preemies in the neonatal intensive care unit, in 2016.
Upon the book’s success, Johns went on to create an organization of the same name — Once Upon a Preemie, Inc. — which is dedicated to improving the Black maternal health and preemie care experience.
There are five priorities found in their policy builder, she said. These policy recommendations can be implemented at the federal, state and local levels. Among them is their recommendation that implicit bias training be mandated and funded, as the lack of such training negatively impacts patient care.
In addition, they are advocating for a more diverse workforce in the neonatal and perinatal fields.
“I can tell you from my three-month journey [with the NICU], there was only one person of color in the NICU, and she was a respiratory therapist,” Johns said.
There is a lack of cultural significance and competency in hospital systems as a whole, she said.
“We understand that the NICU is a microcosm of the larger hospital system where there’s very little cultural concordance between providers delivering care and patients on the receiving end,” she said
In order to address these issues, Johns created Once Upon A Preemie Academy — a virtual training program, the only one of its kind — dedicated to racially equitable prenatal and perinatal healthcare, as well as implicit bias training.
The issue of proper neonatal care is not only important during Prematurity Awareness Month — advocacy and support are needed year-round, especially for Black women, whose prematurity experiences often have direct connections to their prenatal care experiences.
“If you’re a Black woman, or you know a Black woman who has experienced birth trauma, we need their stories [to be told], because they matter,” she said.
“Our stories deserve to be heard until our healthcare systems are held financially accountable. Until our healthcare systems are held financially accountable for the less-than-ethical care delivered to Black moms and babies, we need to speak up. We need to speak loud, and we need to speak often to our elected officials.”
The other panel presenter was Jatesha “Jaye” Wilson, nurse, advocate and founding president and CEO of Melinated Moms — a community-centered organization based in New Jersey that works to create opportunities and solutions for moms and women, and helps them to find the resources that they need to thrive and not just survive, she said in her introduction.
Maternal mortality rates for Black women are high due to historical inequities rooted in slavery, Wilson said.
The answer to this continuing crisis lies in communication, education, and advocacy, she added.
“So how do we change it? . …We do that by having these conversations,” Wilson told the attendees. “We do that by going into the communities and speaking to them about how can we create this space together. We also do it by encouraging people to vote and understanding that their voice is what actually matters and creates the policies that we need for them [ the elected officials and healthcare leaders] to be accountable.”
When it comes to having culturally congruent care, we want to make sure that we have medical providers, nursing and ancillary staff that are reflective of the patients that are being seen, she said. Historically, there have been educational and employment barriers for Black and brown people in these healthcare spaces, putting them at a distinct disadvantage.
“Right now, in 2022, we still only have 3% of all physicians [who are] Black people,” Wilson said. “So, if we’re asking for support, we’re asking for opportunities to be seen and heard and cared for by people who look like us, and only 3% of this humongous profession represents us, how can we have that as a request and then really be satisfied?”
Creating strategic partnerships with organizations working on different aspects of these issues — including a holistic approach, where we learn how to care for one another with one another — is one of the key solutions, Wilson said.
Engaging with local healthcare facilities and engaging with state and federal organizations and agencies is also a crucial step to ensure that the people responsible are aware of these personal stories and are held accountable, she said.
According to Wilson, New Jersey is among the worst states for Black women when it comes to these negative health outcomes.
“Our statistics are [showing that] Black women are dying seven times the rate of our white counterparts,” she said.
In response, her organization has a New Jersey-focused initiative, which identifies Black maternal mortality rates and addresses them head-on through focus groups in hospitals and other key areas comprised of the community stakeholders — namely, the families who are affected. They share stories, ask important questions, and propose solutions to those in power to change them, Wilson said.
Melinated Moms also offers advocacy training, she said.
“This [program] has trained over 1,000 individuals, families, organizations, and agencies — government, public and private sector — to really understand what it looks like to share [their] lived experiences and is a catalyst for introducing people to public policy,” she said.
To further help facilitate the exchange of information between parents and healthcare professionals, Once Upon a Preemie, Inc. is bringing them together for the organization’s first-ever conference in Philadelphia this fall, Johns told the attendees.
Titled “Accelerating Health and Racial Equity in Black Maternal and Neonatal Care,” the conference will take place November 17 at the University Science Center, located at 3675 Market Street, Suite 400, from 8:00 a.m. – 4:00 p.m.
Dr. Terri Major-Kincade, MD, MPH — a double board-certified neonatologist and pediatrician with over 20 years of experience as a clinician, perinatal health disparities advocate, and neonatal palliative care and perinatal hospice provider — will deliver the keynote address.