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Building access one step at a time
Over the past three years, Omaha, NE, has become home to the biggest settlement of Sudanese refugees and immigrants in the United States. Building a bridge to the community of newcomers so as to enable effective TB control hasn’t been easy, says Carol Allensworth, MT (ASCP)SM, division chief of health, data, and planning for the Douglas County health department.
With a cornucopia of Latinos, Asians, and Russian Jews, the city isn’t the WASP-y, white-bread capitol many would think, Allensworth says. Still, the impact of an influx of 5,000 Sudanese in a city of 390,000 has been substantial. Statewide, Nebraska’s TB rate last year was 1.1 per 100,000; among southern Sudanese, the TB rate is about 211 per 100,000.
Adapting to the change has been work, says Allensworth. "Has it taken a lot of our time? Yes," she says. "Are we putting a lot of resources into it? Yes. Are we frustrated? Yes." And yes, she might have added, all the work is finally starting to pay off.
Access to good health care draws immigrants
The Sudanese began arriving three years ago, Allensworth says. At first they gravitated to a single apartment complex, and then a second; now they fill five. Among the factors that drew them were plentiful jobs; the presence of relatives and friends; a strong community-based advocacy group run by a local attorney; and — because the city boasts two university medical schools — good health care.
Soon, not only Sudanese refugees from Africa were coming to Omaha, but also immigrants who’d already settled in other states.
Right from the start, the group posed cultural and public health challenges, says Allensworth. Because Sudanese traditionally eat from a common dish, using their hands and eschewing utensils, there were outbreaks of shigella and other gastrointestinal complaints.
Other Sudanese customs proved hazardous as well. Sudanese mothers who left their children alone while they ran out to do errands, for example, found that child protective services could charge them with abandonment and take their children away. Sudanese men learned that beating their wives was not acceptable in their adopted homeland. To the distress of the Sudanese community, the local newspaper embarked on a series in which such differences were aired and debated, says Allensworth.
From the perspective of TB control, the biggest headache was what to do about widespread latent TB infection among Sudanese children. Not surprisingly, screenings at the university clinics had turned up high rates of latent TB. Soon, a pediatrician with over 300 Sudanese children in her practice began insisting that TB controllers provide directly observed preventive therapy (DOPT) for every child, Allensworth says.
Possible epidemic loomed large in Omaha
"She was very gung-ho, very dedicated, and very insistent," she says. "She warned that without DOPT, we’d soon have an epidemic on our hands."
Despite the fact that the contractors were charging $120 per child visit, Medicaid actually did pick up the cost of the DOPT for a short time. But once it was determined that the long-term costs would run to $1.9 million, Medicaid officials did an about-face, and coverage ceased. At about the same time, three Sudanese infants, as prophesied, came down with active TB. "That just added fuel to the fire," says Allensworth.
To top things off, an outbreak occurred among adults living in one apartment complex. An outreach worker tending to a TB case in another complex uncovered a Sudanese man with undiagnosed, full-blown TB; he’d gone to an emergency room months earlier, been misdiagnosed with pneumonia, and was sent home with a prescription for antibiotics.
Business as usual wasn’t going to cut it, TB experts began to realize. For one thing, language and cultural barriers loomed large. Almost no one in the community of newcomers spoke fluent English, and interpreters were in short supply for both Nuer and Dinka, the languages of the two tribes most widely represented — which, as it turns out, are bitter enemies back home.
Concentric circles? Forget it, says Allensworth. "For one thing, when someone is sick, everyone goes to visit you, whether or not they know you," she says. In addition, custom dictates that when newcomers arrive, they stay two weeks in one apartment, then two weeks in another — a process that continues for up to two months, by which time the new arrivals have their own job and apartment and are ready to take in house guests of their own.
At length, TB controllers decided they needed to go to the apartment complexes and screen every single Sudanese for TB, Allensworth says. Public health experts pulled together a group of Sudanese, along with representatives from the community-based agency, and asked them how best to proceed. "We asked them whether they thought we could do this and how we could gain the trust of the community," says Allensworth.
The group advised them to start with the one group the Sudanese already trusted: their health care providers at the medical school clinics. In short order, letters signed by these providers went out to every Sudanese household, telling them that all family members must be screened for TB and warning that "if you don’t, TB could be transmitted to a child, which could cause death."
TB workers rely on improved trust
Remembering the three infants desperately ill with TB, the community listened, Allensworth says. Soon, trust between TB controllers and the Sudanese community improved to the point that public health workers began going door to door in the apartments. In addition, an agreement was struck with the public schools whereby children over five years old began getting their preventive medication from school nurses, leaving only kids under five needing DOPT at home.
TB nurses, accompanied by translators obtained from the community-based agency, began slowly working their way through one family. Outreach workers doing DOPT spooned medication-laced applesauce into tiny mouths, surrounded by a half-dozen other youngsters begging for a taste. "Doing DOPT on a 12-month-old or a 17-month-old is a trick," laughs Allensworth. "You put the medication into juice or yogurt, and after about three days they’ve figured out what’s happening. Meanwhile everyone else in the family is crawling all over you, clamoring for the juice or the yogurt. The outreach workers are absolute saints."
All the while, the public health department took care to go about its business quietly, Allensworth says. "We had heard from the Sudanese that they didn’t enjoy being a spectacle and that they didn’t want this to be in the newspapers," she says. The Sudanese also needed lots of reassurance that public health officials, though part of the county government, weren’t going to take Sudanese children into custody or otherwise make life difficult. "We had to put out the message that we want to work with you, not against you," she adds.
Collaboration facilitates control efforts
At length, TB controllers decided that combing through the apartment complexes was simply too time- and labor-intensive. Recently, they managed to convince one of the medical schools and state TB control to collaborate in funding a special clinic just for Sudanese; now the hope is to begin transporting Sudanese directly to the special clinic. "The cost for translation services is killing us, and it’s taking so long this way," says Allensworth.
Meanwhile, social workers and visiting nurses are forming women’s groups and men’s groups in the community, trying to put out the word about American customs. The groups seem to be having an effect, Allensworth adds: "Some of the women are becoming more independent," she says. "There seems to be a shift taking place."