by Nancy Maddox, MPH, writer
The southeast corner of Utah is often referred to as “canyon country;” a place where the gods indulged a taste for grandeur. Canyonlands National Park, Hovenweep National Monument and Bears Ears National Monument are all here, among a profusion of protected natural areas and sacred Native American sites.
Also here? The only active conventional uranium plant in the US—White Mesa Mill, owned by the Canadian company, Energy Fuels.
And just three miles beyond that facility—with a licensed capacity of over eight million pounds of uranium per year—lies the small White Mesa reservation of the Ute Mountain Ute Tribe, which is headquartered in Towaoc, Colorado.
Yolanda Badback has lived on White Mesa all her life, along with her four children, ages 15 to 23. And for much of her life, she has been concerned about what’s coming into the nearby mill—which processes locally-mined uranium, plus toxic debris hauled in from across North America—and what’s going out.
Some of Badback’s neighbors lack access to transportation, so to reach the nearest off-reservation town of Blanding, they walk along US Route 191, close to the big rigs carrying radioactive waste to the mill. Badback wonders how much exposure those neighbors suffer. She has other concerns, as well.
“We’re just downstream from the mill,” she said. “If there were a leak in the [tailing] pond, we don’t want it getting into our well water.” She also worries about toxic contamination in the deer that community members hunt and eat to celebrate their culture, in the wild-foraged herbs they use to “heal our body, if we’re sick,” and in the air blown across hundreds of acres of tailing ponds.
Thanks to a partnership between Ute Mountain Ute Tribal authorities and the Utah Department of Health, some tribal members no longer have to guess their exposure to key toxicants. As part of the Four Corners States Biomonitoring Consortium, the Utah Public Health Laboratory has been studying residents’ exposure to common toxicants for about a decade. Now in its second cycle of funding from the US Centers for Disease Control and Prevention (CDC), the consortium is measuring heavy metals, pesticide chemicals, disinfectant and deodorant byproducts and phthalate metabolites in human specimens from across the region.
Said Laboratory Director Robyn Atkinson-Dunn, PhD, “We’ve been trying to determine where throughout the state we could focus, communities that maybe have some health concerns. White Mesa was one of the places our [study] group went. They were concerned about heavy metals, particularly uranium.”
That kind of outreach and public health laboratory support is not unique. And it is becoming ever more common as health departments and their collaborators intensify efforts to empower underserved communities and reduce health disparities.
Proactive vs. Reactive Public Health
Public health laboratories, said Atkinson-Dunn, have “been addressing health disparities as long as public health laboratories have existed.” She said, “When you look at our infectious disease group, the bread and butter of what they do is STD and TB testing. And the majority of communities we serve [with those programs] are those who are seeking care at free clinics.”
Indeed, the average state public health laboratory performs HIV diagnostic testing on about 21,000 specimens per year, according to APHL data. Three quarters of state public health laboratories provide first-line TB drug susceptibility testing. And 82% of state public health laboratories test children’s blood for lead. All of these activities mainly target low-income individuals, though they indirectly benefit the larger society as well.
Yet in the public health laboratory, as in public health writ large, there is a growing effort to “more consciously” address health disparities, said Jennifer Rakeman, PhD, director of the New York City Public Health Laboratory.
Thus, instead of waiting for residents to ask for services, more public health laboratories are proactively sending staff out into the community to learn how the laboratory can help.
In Utah, a liaison with the health agency’s Office of American Indian/Alaska Native Health Affairs, Melissa Zito, MS, RN, helped the laboratory navigate the complex relationship between the state government and the Ute Mountain Ute Tribal government. Zito said “tribes don’t always want to work with us, because of historical mistrust” and explained that there is a formal consultation process agreed to by all American Indian tribes in Utah to assure “we’re working on a government-to-government basis that recognizes their Tribal sovereignty.” Gaining buy-in from all vested parties was key to project success.
Ultimately, the health department collected urine specimens and well water samples from 19 communities throughout the state, including Utah’s White Mesa Reservation. Altogether, 7.4% of the urine specimens exceeded 0.029 µg uranium/g—the 95th percentile value from the National Health and Nutrition Examination Survey (NHANES), a CDC study that examines a nationally representative sample of about 5,000 people/year (The NHANES value is used because there is no official reference standard for safe human uranium exposure). And 2.5% of all the well water samples exceeded the US Environmental Protection Agency maximum contaminant level of 30 µg uranium/g.
Since the Utah Department of Health is still analyzing test data, Atkinson-Dunn said findings will first be shared with the state’s environmental epidemiologist and Ute Mountain Ute Tribal public health authorities upon completion. In addition, every participant will receive their own test results, along with information to put results “into perspective” and to facilitate follow-up.
“This is a research study with [institutional review board oversight],” said Atkinson-Dunn. “So we have to be very clear that the results are in no way diagnostic. And that’s why we direct [participants] to other resources if they have questions about what this data means for their personal health.”
In the meantime, the Ute Mountain Ute Tribe is building a new water treatment plant on its reservation. Atkinson-Dunn said, “We’re more than happy to go back and assess their treated water.”
Working “Intentionally” to Reduce Health Disparities
Fundamentally, the end goal of efforts like the Utah study is health equity, an outcome Healthy People 2020 defines as “the attainment of the highest level of health for all people.” Health equity, in turn, depends on creating social and physical environments that actually promote health for all.
Mighty Fine, MPH, CHES, director of the American Public Health Association’s Center for Public Health Practice and Professional Development, said health equity encompasses everything from “who can buy homes where” to “who has access to what healthcare options.”
“Those are not arbitrary,” he said.
While health equity “is not a brand new issue,” said Fine, “what’s changing is that we’re unpacking it more and looking at the social determinants of health, which is a newer concept. In public health, we want people to change adverse behaviors and live a healthy lifestyle, but sometimes people are trapped by systems that conspire against that change. So we have to work to identify, break down and dismantle those systems to make change more likely.”
Among the social determinants of health tracked by Healthy People 2020—a federal initiative that sets ten-year, national health objectives—are the proportion of people living in poverty, number of days of poor air quality and homicide rate.
Fine said, “I think it’s great that public health laboratories are engaging even more in this space, because we know it’s going to take a collective effort.” He called for “thinking more strategically, thinking about how the public health workforce might more intentionally work with public health labs, and how the labs can work more intentionally with the larger public health system.”
In New York City, an ambitious effort to improve Zika testing two years ago shows what can be gained by such thinking.
Zika virus—a mostly mosquito-borne illness that can cause devastating birth defects when women are infected during pregnancy—prompted the World Health Organization to declare a Public Health Emergency of International Concern in early 2016, after tens of thousands of cases were confirmed in Latin America and many more suspected.
Although New York City never experienced local Zika virus transmission, the city documented 993 travel-associated cases that year, primarily linked to the Dominican Republic, Jamaica and Puerto Rico.
At the time, all local Zika virus testing was performed at the New York City Public Health Laboratory, so authorities knew who was getting tested.
Health department epidemiologists noticed early on, said Rakeman, that “the patients who were being tested were not the patients we felt had ties to Zika-affected areas, such as people born in those areas and thus more likely to travel there.”
For example, a preponderance of tested patients had zip codes linked to the Upper East Side, Chelsea and other affluent neighborhoods, with far fewer from Bronx and Brooklyn neighborhoods with substantial populations hailing from Latin America.
Rakeman said, historically, “Many laboratories and many laboratorians thought we just get the specimens and don’t think about whose specimens we should get and who we should test. More recently we’ve begun thinking about how to ensure our tests are equally available to everyone who needs them, so we’ve started to think about access to testing, what tests we provide and how we provide them, to shed light on health inequities.”
Having trained at both a “well-resourced” tertiary care hospital and a “very under-resourced” county hospital, Rakeman knows that it is much harder to order tests in under-staffed facilities: “In a ten-minute visit, spending nine minutes trying to get a test ordered may not serve the patient well.”
Public health laboratory staff found that this same dynamic was playing out in the case of Zika. Thus, in March 2016, the New York City Department of Health launched an “all-out effort to ensure that people who needed Zika testing got Zika testing.”
One of the centerpieces of this effort was a dedicated call center to provide information to providers and clinical labs to assure appropriate patients were being tested and to streamline the test ordering process itself. Call center operators used a newly developed electronic test ordering system, eOrder, launched specifically to facilitate Zika testing. The public health laboratory, in turn, received higher quality specimen submissions, with complete and correct test ordering data.
Additionally, the city health commissioner held press conferences and met with local elected officials to publicize Zika test recommendations and the new call center.
The result, said Rakeman, was “striking”: “We went from a complete mismatch [before the outreach], and after outreach it completely flipped—the demographic of at-risk patients matched the patients getting tested.”
By year’s end, the city public health laboratory will roll out an expanded version of eOrder that will accommodate all public health laboratory test ordering and results reporting. The first round of user testing will focus on facilities that have had problem specimen submissions in the past and that cater to under-served populations.
“All I could ask for is a good faith effort”
Another success story comes from Minnesota and relates to a test area not usually associated with health equity: newborn screening (NBS).
Maggie Dreon, MS, CGC, a genetic counselor at the Minnesota Public Health Laboratory, said, “I think when people think about NBS, they think it is not relevant to health equity; we test all babies for all [state NBS] disorders. I think the reason it is actually the opposite is because there are certain populations that are more likely to be impacted by some disorders, and how we respond to those specific communities needs to be specific to ensure they get the optimal experience from the process.”
The Minnesota laboratory has been screening for sickle cell disease since 1988, identifying infants with the blood disorder, those without the blood disorder and those with a condition known as sickle cell trait, characterized by the presence of both normal and abnormal hemoglobin. Individuals with sickle cell trait will never develop symptoms of sickle cell disease. But, as “carriers,” they face a one-in-four chance of passing the disease to their biological offspring, if they have a child with another carrier.
Children with sickle cell disease, said Dreon, “will have to be followed by a hematologist, will need to start certain meds in their infancy to reduce the risk for sepsis. They will experience anemia, will develop pain crises and can have strokes. It is a systemic disease and requires lifelong, extensive care.”
While only about 25 Minnesota babies are diagnosed with sickle cell disease each year, roughly 1,100 are identified as carriers (out of approximately 67,000 babies born in Minnesota annually).
In 2015, the public health laboratory began examining how sickle cell trait findings were communicated to affected families—who are mostly African-American or West African. Based on a survey of pediatricians and other newborn providers, the laboratory determined that, in 74% of cases, the information wasn’t shared at all.
This gap, said Dreon, represented a missed opportunity: “This could be the first time the parents find out [at least one of them has sickle cell trait].” She said, “Our goal isn’t to tell two people, both with [sickle cell] trait, not to have children, but rather to make sure families are informed about their reproductive risks.”
The Minnesota Department of Health then conducted a series of key informant interviews with community leaders and hosted five focus groups in the Twin Cities and a suburban West African enclave. Focus group participants had to be parents, had to be African-American or West African, and had to be of reproductive age, so they could “put themselves in the shoes of a new parent.”
Dreon said community members wanted to know if their children were carriers and “the pervasive community opinion” was that no single method of sharing positive sickle cell trait findings would work for everyone.
As one focus group participant said, “Some will prefer phone calls, some will prefer letters, some will prefer an in-person [meeting]. Is there a way to do all three? Is there a way to do at least two out of three? I think that all I could ask for is a good faith effort.”
Thus, today the laboratory uses a multi-prong approach, with notification to infants’ physician of record or the clinics likely to follow the infants and, for the first time ever, directly to parents via US mail. In addition—because parents wanted access to a sickle cell expert—the public health laboratory created a position for someone certified in sickle cell counseling.
After the new process was established, a follow-up physician survey found that doctors now discuss positive sickle cell trait findings with families 59% percent of the time, up from 26% previously. And post-intervention focus groups confirmed that families “felt more empowered because they had this information,” Dreon said.
Finally, the Minnesota Department of Health began a working group to address challenges faced by the sickle cell community. For example, said Dreon, “Kids with sickle cell disease have pain crises, and they present to the ER with excruciating pain, and the treatment is opioids. And it’s going to be a high dose. It’s very likely a black individual [seeking pain relief] who is labeled a drug-seeker and met with a lot of resistance. There’s published literature showing they’re likely to encounter treatment delays.”
Anytime you engage the community, Dreon said, “it’s a bit of a Pandora’s Box, but that’s the point.” Or, in other words, to uncover health inequities, you first have to look for them.