Published February 19, 2021
By Paula Derrow
Black women in New Jersey die or experience significant health problems related to pregnancy, birth, and infant mortality at dramatically higher rates than white women. The same pattern holds for almost every health problem in New Jersey. Experts at Rutgers want to do something novel: empower the community to determine their solutions. Their work will serve as a model for urban areas throughout the United States and the world.
When Iaishia Smith discovered she was pregnant in the fall of 2017, she did everything possible to ensure that she had a healthy baby. “I’ve always eaten well and exercised, and I don’t drink or smoke, but since I was in my mid-30s, I had to go through an additional level of screening for genetic issues—and I did all that,” says Smith, now 38, a program manager for Cisco who lives in Woodbridge, New Jersey. And indeed, her pregnancy was a smooth one until at around seven months, when she tested positive for gestational diabetes, a condition that can cause health problems for both mother and child. At her doctor’s advice, she underwent another, more extensive test. “I never heard back, so I assumed no news was good news, and my doctor never brought it up again,” recalls Smith. This is an example of how the health system regularly operates, only reaching out when there are problems, so it was entirely reasonable that Smith concluded that all was well.
Smith was concerned when, in her eighth month, she noticed that her feet were swollen and she couldn’t quench her thirst, no matter how much water she drank. “My doctor basically said that my symptoms weren’t uncommon, and she didn’t do any further testing,” Smith recalls. But when, near the end of her pregnancy, Smith went in for a routine ultrasound, there was no heartbeat. “We were crushed—devastated,” Smith says. “I cried in the shower every day for six months.” Smith, whose blood sugar level was in the diabetic range when she had a caesarean section soon after, believes that her untreated gestational diabetes could have contributed to her baby’s death. “I don’t blame my doctor, but I just wish I had pushed more, asked more questions, and been my own advocate.” The health care system failed her.
Different outcomes for different patients
Sadly, Smith’s experience is not an anomaly. Black infants are twice as likely to die in their first year of life as white infants. Deaths and near-deaths of otherwise healthy Black women from pregnancy or childbirth occur at four to five times the rate of white or Latinx women. “New Jersey has among the worst rates of maternal death in the entire country—and no one should be dying of childbirth in a country with as much medical care as the United States,” says Leslie Kantor, Ph.D., M.P.H., the inaugural chair of the Department of Urban-Global Public Health at the Rutgers School of Public Health.
These disparities go well beyond childbirth and maternal health. “The one bit of good news that has come out of COVID-19 is that many people have finally come to see the huge inequities that exist in employment, housing, and transportation, as well as health care,” says Kantor. All of these social determinants of health have led to Black, Brown, and Indigenous people being more than three times as likely to die of COVID-19 than white people.
That doesn’t surprise Atiba Page, a diversity recruitment manager for Bristol Meyers Squibb. Three years ago, she found herself in the office of a breast surgeon, surrounded by a team of residents on hand for her breast biopsy. “It was overwhelming,” says Page, then 39. “I found the lump on Christmas Eve, and everything moved so fast. I went from my first-ever mammogram and ultrasound on a Wednesday to being in a cancer hospital for a biopsy on Friday.”
“I was crying in the office,” she recalls, “and I needed a moment to compose myself.” But as she was getting herself together, one of the residents, who was white and male, said, “‘What did you expect? You’re at a cancer hospital. Did you honestly think you would hear that you didn’t have cancer?’” Page recalls. “It knocked the wind out of me.”
After the resident’s comment, Page asked him to leave the room. Then her thoughts strayed to a 14-year-old Black girl she’d met in the waiting area, who also was there for a biopsy. “I knew the chances were good that someone who looked like me but didn’t have access to the resources and knowledge I do might have a hard time standing up for herself,” she reflects. “And while part of what happened was probably due to that resident’s lack of experience, race typically plays a part when these kinds of interactions happen.”
Public health seeks to prevent health problems, among them cancer, HIV, and obesity. Taking an equity and social justice approach, however, means that reducing overall disease is not enough. Rather, with this new focus, the goal is for disease to be prevented and wellness to exist for all, regardless of zip code, income, race/ethnicity, gender, sexual orientation or intersecting identities. This will happen only with more involvement from every sector of society and public health working in tandem with health care systems. Just as important, there needs to be a firm commitment to ensuring that the community leads the way.
A new approach to public health
One major contributor to health disparities is the multiple forms of discrimination faced by marginalized groups. One example: Black women in the United States are 42 percent more likely to die of breast cancer than are white women, despite being diagnosed at the same rate.
Systemic racism is present in health care, evidenced, in part, by conscious or unconscious biases—biases that can prevent women of color from getting the kind of care they deserve. “We have to question what’s going on that causes white providers to spend less time with Black patients and other differences in treatment,” says Kantor.
She and Perry N. Halkitis, Ph.D., M.S., M.P.H., dean and professor of biostatistics and urban-global public health at the Rutgers School of Public Health, intend to change these kinds of experiences for women of color in New Jersey, as well as for all populations within the state who continue to experience heightened health disparities. To challenge both types of biases, which are all-too common, Halkitis and Kantor are developing programming that is rooted in health equity and social justice.
Their goal is to marshal the resources of the School of Public Health, as well as community partnerships and engagement across sectors, to help change the attitudes and systemic racism that lead to the kind of negative interactions that Page and Smith experienced. “Health disparities, whether in the current COVID-19 pandemic or with numerous other health crises, are well documented,” Halkitis says. “We need to move beyond simply documenting disparities, however. We need to develop programming that bolsters health. This calls for a paradigm shift in how we understand and deliver both prevention and treatment.” The big difference in this model? It includes medical professionals but does not rely solely on them. “If there is one other clear lesson from COVID-19,” adds Halkitis, “it’s that public health—not the health care system—should have led the rollout of the COVID-19 vaccination and testing programs.”
Public health scholars like Halkitis and Kantor think of themselves as working both with and for the people and populations they study and serve. “With and for have been missing from our approach to health for too long,” he adds.
Both Halkitis and Kantor have spent their careers addressing the social and structural conditions that fuel health inequalities—Halkitis in infectious disease research and advocacy–particularly with regard to HIV–and substance abuse. Kantor’s background is in sexual and reproductive health and health education. The two are passionate about addressing biases from within the health care community and the entrenched social inequities that lead to disparities in outcomes. “We can treat diseases with medication and try to change behavior, but to even the playing field, we have to address the policies, laws, and attitudes that govern society and place certain vulnerable populations at heightened risk,” says Halkitis. “No one wants to suffer from addiction or obesity or Type 2 diabetes; the social conditions that shape the lives of marginalized people create the fertile foundation for these health challenges.”
Smith encountered that kind of bias when she consulted a nutritionist to help control her gestational diabetes during her second pregnancy in 2019. “I asked her to suggest a nighttime snack that would help control my blood sugar and she said, ‘Why don’t you try something like leftover fried chicken?’” Smith recalls.
When asked if she believed the comment to be explicitly racist, Smith replies, “What do you think? I don’t even eat fried chicken—it’s not healthy! I asked her if she gave that kind of advice to all her clients, then told her I was finding someone else to consult with.”
Smith carried this encounter and her previous experience with her throughout her second pregnancy, advocating for herself and insisting on getting tested and treated for gestational diabetes at 16 weeks instead of at 25 weeks, as is the norm. “At every appointment, I came in with a list of questions,” she says. “With my new doctor, I felt seen and heard.”
A change in direction
Another problem that Halkitis and Kantor plan to address is the tendency for academics, public health experts and medical professionals to work “in their own silos,” as Kantor puts it. “Typically, researchers enter a community, collect the data, then disappear, never to be seen again,” she says. “We want to put the community in the forefront to ensure that they both guide the research and help craft the solutions.”
Halkitis and Kantor hope to engage Black women and other marginalized groups in New Jersey to serve as community researchers to learn deeply about the experiences of this population and work with the health care system, government, and industry to develop novel and scalable solutions. “We need to empower people to develop the solutions as they sit alongside the health researchers, clinicians, policy makers, and advocates,” says Halkitis.
As an anchor institution in New Jersey and an important presence in Newark—which has a majority Black population—the School of Public Health will collaborate closely with residents, starting with women who, like Smith, have had negative experiences during pregnancy and childbirth. “We want to find out what’s needed, then deploy our expertise, not simply suggest solutions because those happen to align with our expertise,” says Kantor.
Kantor is recruiting women of color to be researchers who will go out into the community and talk to other women. “They will develop questions, decide on the best way to collect data, and make policy and program recommendations,” Kantor says.
Easing a history of mistrust and systemic racism
For Halkitis, one crucial issue is to stop thinking of treating diseases and changing people’s behavior as separate things—one area covered by medical doctors and the other by public health experts. “To date, neither public health nor clinical care has effectively attended to psychosocial conditions such as fear, loneliness, medical mistrust, powerlessness, and stigma, all of which fuel disease,” he wrote in a recent article for American Psychologist.
He believes institutions must adopt a “public health psychology” way of thinking to help bridge the gap between the two fields. “By attending to these psychosocial stressors and developing programming to address the burdens, [we] can fill the gap that is too often neglected by clinical care and public health in enhancing health and well-being,” Halkitis says.
Public health psychology is very much infused in the School of Public Health, which is developing a new concentration in population mental health.
Another way Halkitis and Kantor hope to improve Newark residents’ lives and experiences and alleviate some of the fear and mistrust is to train health professionals who already live in and understand the community. That’s why the school implemented a program for Newark Department of Health employees to earn a certificate in population health. The school is also working to expose area high school and college students to public health careers. Many young people aren’t aware of the myriad career possibilities in the field of public health. The PHocus program, held every summer by the School of Public Health, has educated dozens of Newark students about public health careers.
Halkitis and Kantor are building on the efforts of Nancy Cantor, chancellor of Rutgers University–Newark, and Denise Rodgers, vice chancellor of Rutgers Biomedical and Health Sciences, to bring together the university, hospitals, clinics, community organizations, the business community, and even arts organizations to address the needs of Newark residents. “It’s a big task, but it’s the right task,” says Kantor. “If we don’t focus on some of the root causes of why people of color are getting sick and dying at higher rates than white people, we will have the same experience over and over.”
That means tackling the causes of systemic racism to start to break the cycle. “As a country, it’s really good news that we are starting to look at how systemic racism shows up in clinical interactions,” says Kantor. “But it can’t just be about individual-level change. We have to question the way the existing systems and structures drive people’s behavior.” That includes the role of insurers and hospitals as well as the broad systems of housing, transportation, and employment. “If all of those sectors are engaged more directly in improving public health, they have the potential to contribute to better health equity,” says Kantor.
To that end, Kantor is beginning to work with labor and delivery hospitals to help those institutions figure out how racism shows up in their systems and structures. Key to that plan is to learn more directly from health care providers in Newark about what they think would make a difference in rooting out racism in maternal health care.
Meanwhile, Iaishia Smith and Atiba Page are on their own paths to challenging systemic racism, one doctor and patient at a time. “I tell everyone in my circle that if your doctor doesn’t pay attention, and if you don’t feel comfortable asking questions, find a new doctor,” says Smith, who went on to have a healthy son in August 2019.
After the rocky period in her own health journey, Page, who was ultimately diagnosed with Stage IV inflammatory breast cancer, is now happy with the care she is receiving. After six rounds of chemotherapy, a mastectomy, and two procedures to excise tumors that had spread to her brain, she is feeling good, working full time, and passionate about sharing her story on social media and with friends and colleagues to help change attitudes. “It’s not only the medical community,” she says. “Black families have to learn to discuss their medical histories around the dinner table.”
Page already has changed one person’s attitude—the young resident who dismissed her tears during her biopsy three years ago. A few months after that incident, Page ran into him at the hospital. “He apologized, said he had been ignorant, and was trying to gain a better understanding of what patients go through,” Page recalls. “I ended up hugging him. It takes a lot of courage to admit that you’re wrong—and hopefully, he’ll now have better people skills.”
With Rutgers–Newark and the School of Public Health bringing more people like Page and Smith to the table, transformation will be possible. “Too often, we don’t hear the voices of people that programs are designed for,” Kantor says. “There’s not enough of asking women what happened to them and what they want to change and then actually enacting those changes.”