Fear and confusion about HIV among some members of Utah's African immigrant and refugee community are creating concern that the virus could spread, community members say.
People with HIV are often afraid to disclose their status, expecting judgment and stigma. Rumors percolate about people refusing treatment or transmitting the virus to others.
"If you are sick, let people know you are sick just be bold," said Joseph Nahas, an immigrant from Sierra Leone who works at Utah's Refugee Services Office. "You can save so many lives."
Whether HIV is truly growing among the African community here is unknown. That uncertainty is not unique to Utah. But some states have already analyzed data demonstrating that the rate of new infection is higher among foreign-born black people than those born in the U.S. though the number of cases is low compared to the white population.
According to newly analyzed data of HIV diagnoses in Utah between 2007 and 2011, about two-thirds of black people with the virus were born in a foreign country. Though it's only 30 cases, officials say that number is big enough to raise more questions.
"If they're getting here and are already infected, are we getting them the services they need?" asked Matt Mietchen, an epidemiologist with the Utah Department of Health. "If they're getting it here, why and what can we do?"
Not in America • One of the biggest misconceptions among some new arrivals from Africa is that HIV doesn't exist in America, that the risk is minimal because the prevalence is so low.
"There's the perception that there's no HIV in the U.S. anymore," said Margaret Korto, a senior program analyst with the federal Office of Minority Health Resource Center.
Korto was among a group of experts who spoke at training sessions in Utah on the challenges of the virus and the need for culturally appropriate education and care. Her office is involved in the National African HIV/AIDS Initiative aimed at improving the health of African immigrants and refugees.
Ijeoma Otigbuo, a professor from Montgomery College in Maryland, spoke at the training about the fear of contagion and the perception that HIV is a death sentence. She has seen women kicked out of their houses by husbands because of their HIV status.
"People might be silent about it, but it is true I have one living with me right now," said the professor, who is head of the school's AIDS Awareness Resource Center.
Some patients delay going to the doctor. They may be skeptical of the American health system or fear the treatment won't be truly confidential.
In Africa, many people do not have the means to seek preventive care and may not use it in the U.S. either.
In Africa, Otigbuo has seen families that are afraid of infection build a separate hut for a relative who has HIV. But such misconceptions don't always disappear once the newcomers come to America.
"In the African immigrant community, some believe that the death of an AIDS patient is caused by witchcraft," she said.
Utah's Refugee Services Office is among the organizations encouraging community groups to hold workshops on HIV to educate about prevention and treatment.
"The community is very worried now," said Nahas, who helps oversee grants for refugee groups. "It's really spreading."
His perception echoes what some members of the African community believe, although it's not verified by any numbers. The Utah Department of Health HIV education specialist, Heather Bush, is eager for facts.
"If we did some more systematic testing we would maybe find out it really isn't a problem," she said. "We need more information from this population not just hearsay."
Seeking help • Not every African immigrant or refugee in Utah is wary of testing or treatment. Maggie Snyder, a physician assistant at the University of Utah HIV clinic, works with many newcomers who appreciate American medical resources.
"If people will take their medicines they can live a normal life," she said.
Between 2007 and 2011, 553 people in Utah were diagnosed with HIV, 64 percent of whom were white. Twenty-one percent were Latino and about 8 percent were black. In some cases, ethnicity was unknown.
But challenges persist, such as finding interpreters who may not know the patient, convincing some patients that traditional healing methods are not superior, and explaining that medication must be taken long-term not just until the bottle is empty.
Pregnant patients will take medication to prevent transmission to the baby, but may be reluctant to skip breastfeeding, which could also pass the virus. They don't want to out themselves.
"In some cultures in Africa, if people don't see you feeding your baby, that means you have HIV," said Harry Rosado, a physician at the clinic. Officials encourage the mother to use baby formula to be safe.
"We know some of them will not follow that advice," he said.
Valentine Mukundente, a Rwandan refugee, said back home, people assume that someone with HIV has been having unprotected sex with multiple partners.
"People are not open they feel shy or embarrassed to talk about [their status]," said Mukundente, who founded the Best of Africa Cultural Group, whose work has included HIV workshops. "If nothing changes, things will get worse."
But even talking about sex can be extremely difficult. Bush, the state HIV education specialist, was holding a workshop for Somalis, most of whom were Muslim, when she was told: "We don't have sex, we have babies."
Greater impact • Bush wants to see HIV data broken out further, as other states have done, to clarify whether HIV is indeed a growing concern among Utah's African community or the rumors are all wrong.
"If we can't say that refugees are a high-risk population, then we don't have funding to target them," she said. The challenge is that without funding, it's harder to know if there's a problem to address.
In Washington state, the rate of new HIV infection was relatively stable between 2005 and 2010 for foreign-born blacks, native-born blacks and whites. However, the rate of new infection was dramatically higher within the foreign-born population compared to the others. Some of those people may have been previously diagnosed in their home country, but are considered a new case under the state's surveillance system.
During that five-year period, the rate of new diagnoses for foreign-born blacks was 111 per 100,000 averaging about 41 people per year. Native-born blacks had a rate of 28 per 100,000 averaging 52 cases per year.
Whites, by contrast, had a rate of 7 per 100,000, averaging 330 new cases per year.
Differentiating the data allowed King County, Washington state's largest, to target funding to agencies that work directly with refugee and African immigrant populations. A pilot project began at a county hospital to test African immigrants on their HIV status. HIV outreach became highly specialized, including to taxi dispatch stations where many African immigrants work.
In Minnesota, data also show a significantly higher rate for African-born residents than other blacks. For cases diagnosed in 2011, the rate per 100,000 for those born in Africa was 60 compared to 32 for all other blacks. The rate for the white population was 3.25 per 100,000.
Similar data is not yet available in Utah, though officials hope that, once it is, it will allow them to target prevention and education efforts locally, said Mietchen, the Utah epidemiologist.
"We know this is highly affecting folks born in foreign countries. The next question is why?" he said.
Need HIV testing?
O Confidential testing is available statewide. Go to http://1.usa.gov/rr6jwG for more information.
What is a refugee?
Refugees are legal immigrants brought to the U.S. due to persecution or threat of persecution.