By Will Atwater | North Carolina Health News
Usually, the Town of Navassa's Community Center parking lot is empty on Sundays, but that wasn’t the case the weekend before Thanksgiving.
Navassa, a predominantly Black community, is in Brunswick County and gets its drinking water from the Cape Fear River, as does its neighbor Wilmington, which is about six miles southeast. That makes the town’s residents prime candidates to join the GenX Exposure Study, a multisite study where environmental health researchers are examining the blood of people who’ve been exposed to per- and polyfluoroalkyl substances (PFAS), which have contaminated waterways throughout the state.
And that’s why cars were in the center’s lot on Sunday.
Patricia Branham was one of two phlebotomists there ready to collect blood samples. Branham relies on her years of collecting blood — and her experience as a GenX Exposure Study participant — to help ease anxiety people may have about giving blood.
"I try to explain why we're drawing blood, why [we're] going through your medical history questions, why we're doing a urine test," Branham said. "Because a lot of [people] in the African American community" don't like giving blood.
A lingering history
In addition to overcoming concerns about being poked by a needle, African Americans’ and other communities of color’s apprehension about joining health studies is rooted in history.
Look no further than the Tuskegee Experiment.
In 1932, the U.S. Public Health Service Untreated Syphilis Study at Tuskegee University consisted of 600 Black men — more than half were infected with syphilis. Researchers lied to the participants about what they were being exposed to. And years later, after penicillin became the primary treatment for the disease, the men in the study did not receive penicillin. Many suffered unnecessarily, all while researchers studied the effects of secondary and tertiary syphilis on their bodies and brains. The study was only halted in 1972, after news stories pulled back the curtain on the practice.
Navassa Mayor Eulis Willis, one of the residents who joined the GenX Exposure Study, alluded to the past injustices done to African Americans by medical researchers.
“My experience has been that my people don't like to participate in studies such as this, because they feel like they're being [a] guinea pig,” Willis said.
But Willis sees participation in this study as a benefit.
“I thought it would be perfect for [people] to be able to document if they have problems with [contamination],” he said. “At least now there will be a record somewhere that says, ‘Hey, 100 people in Navassa have PFAS problems.’”
Former Town Council member Minnie Brown agreed that having accurate medical information is vital to the long-term health of community members.
“Most of these people here, their mothers and fathers … passed away, and they don't know what they passed away from,” Brown noted as an example of the lack of information that leads to distrust of medical personnel.
Clinicians were collecting blood and urine samples and medical histories that Sunday because, after delays related to the COVID-19 pandemic, the GenX Exposure Study had arrived in Navassa to add more African Americans and people of color to the group of participants.
In 2017, the year that GenX chemicals, which are a class of PFAS, were found in the Cape Fear River, N.C. State University epidemiologist Jane Hoppin and colleagues, including East Carolina University epidemiologist Suzanne Lea, launched the GenX Exposure Study to answer some of the many questions about the potential health impacts of the chemicals on humans.
The beginning
Before the launch of the GenX Exposure Study, Lea and Hoppin had worked together on environmental health issues as part of the Center for Human Health and the Environment at N.C. State University. The center brings together researchers within the university and those from the East Carolina University’s Brody School of Medicine, North Carolina Central University and the N.C. Department of Health and Human Services to investigate and lessen environmental effects on humans.
Lea recalls developing an action plan soon after Detlef Knappe, a professor in the N.C. State University Dept. of Civil, Construction and Environmental Engineering, shared research with the Wilmington Star News that detailed the presence of GenX compounds in the Cape Fear River.
“I said [to Jane], ‘Let me call the health director with the New Hanover County Health Department and see what we can do,’” Lea said. “And we wrote a grant to the National Institute of Health, and the New Hanover County health director talked to the city council and county commissioners and we started …”
In the lower Cape Fear Region, the study includes public water users in New Hanover and Brunswick counties and well water users in Bladen, Cumberland and Robeson counties, whose wells have been tested for contamination by Chemours or the N.C. Department of Environmental Quality.
Chemours’ Fayetteville Works plant, on the border of Cumberland and Bladen counties, has been fingered as the culprit in the GenX contamination in the lower Cape Fear, both for dumping chemicals into the river and for the PFAS that came out of smokestacks and drifted on the wind to surrounding municipalities.
In the upper Cape Fear Region, the study includes residents of Pittsboro whose drinking water comes from the Haw River — a tributary of the Cape Fear — where contaminants emanating from industries in Greensboro and elsewhere have added to the level of chemicals.
Since 2017, the study has recruited roughly 1,400 participants, and researchers want to add more African Americans, Lea said.
“We really feel like at least 20 percent of that total group should be African Americans to reflect the size in our state,” she said.
African Americans account for roughly 22 percent of North Carolina’s population, according to U.S. Census data.
Developing a recruitment strategy
To get more African Americans to join the study, community partner Veronica Carter contacted fellow activists for help. Before Sunday, Carter had worked to get Black residents in Wilmington to participate in the GenX Exposure Study blood collection event at the Warner AME Zion Church on Friday, Nov. 17, and Saturday, Nov. 18.
"[We] tried to spread the word through the Black churches," Carter said. "I reached out to other activists that went to those churches and said, 'Hey, do me a favor. Give these flyers out to your congregation and explain to them why we need to be involved [in the study].'"
Town officials took a similar approach in Navassa. They passed out flyers, posted on social media, reached out to the pastor of Davis Chapel Missionary Baptist Church (located a stone's throw from the community center) and employed a phone tree to reach people at home, Brown said.
Their work yielded positive results. GenX Exposure Study staffer Sarah Colley relayed in an email: "We saw just over 100 people throughout the weekend: around 50 previously enrolled participants returning for their follow-up appointments, and 50 people who decided to newly enroll this weekend and self-identified as Black/African American or Hispanic/LatinX.”
"We will report participants' individual PFAS and clinical results in the next six months, and we will host a community meeting afterward to further discuss and contextualize these results and the opportunity for Q&A/discussion.”
On Sunday, Lea said that the Nov. 19 event was the last opportunity for people to join the study in 2023. Study organizers will announce more opportunities for 2024.
In the parking lot of the Navassa Community Center on Sunday, Mary Rembrandt offered her thoughts on why diversity matters in medical studies.
"I think it's so important that variety is [included] with any test because it's not just the color of skin,” Rembrandt said. “It’s environment, [among other] things. Different cultures might have different circumstances, such as diet or things like that. So I think it's important to have that wide base of different people to get tested."
This article first appeared on North Carolina Health News and is republished here under a Creative Commons license.
North Carolina Health News is an independent, non-partisan, not-for-profit, statewide news organization dedicated to covering all things health care in North Carolina. Visit NCHN at northcarolinahealthnews.org.
