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When Isadore Boni was diagnosed with HIV, he was a 35-year-old social worker living and working on the San Carlos Apache reservation in Arizona. A full-blooded Apache, Isadore was shunned by his tribe because of his HIV status. He slept on the streets of Phoenix for two years as he struggled to cope with his illness and the stigma associated with being HIV-positive.
He’s just one example of how the HIV/AIDS epidemic has hit American Indians and Alaska Natives harder than other groups in the U.S. Native populations have higher rates of HIV/AIDS compared with white Americans. But stigma and a small population size contribute to a culture of silence. Missing data on the actual number of American Indians and Alaska natives living with HIV/AIDS adds to the problem.
America’s 5 million American Indians and Alaska Natives make up 1.7 percent of the U.S. population and less than 1 percent of new HIV cases. But proportionally, more American Indians and Alaska Natives are living with the virus than white Americans. The rate of HIV is 30 percent higher and the rate of AIDS is 50 percent higher among American Indians and Alaska Natives compared with white Americans, according to the Department of Health and Human Service’s Office of Minority Health.
These numbers are likely underestimates. Nearly one-third of HIV-positive American Indians were misclassified as another race in public health HIV surveillance systems, according to a study conducted by the Centers for Disease Control and Prevention (CDC). Seventy percent of HIV-positive American Indians were classified as white and nearly 20 percent as Hispanic, in the CDC study.
“There’s a lot of racial misclassification when it comes to American Indians,” says Pamela Jumper-Thurman, project director of the Committee to Action for Seventh Generation Awareness and Education HIV/AIDS Prevention Project in Colorado. Jumper-Thurman is a member of the Western Cherokee tribe and one of few American Indian scientists studying the HIV epidemic in native populations.
She argues that the number of HIV-positive American Indians and Alaska Natives is higher than the numbers reported by the CDC. “The CDC uses information that the states send them,” she says, “but for the most part, American Indians use Indian Health Services and that data may never reach the CDC.”
Indian Health Services (IHS) is the federally-funded program that provides health care to approximately half of the nation’s indigenous population. Some tribes operate their own health facilities. But many HIV-positive American Indians and Alaska Natives choose not to access care at IHS or tribal facilities for fear of their HIV status being revealed.
Tommy Chesbro was diagnosed with HIV in 1986 and initially traveled out of state for HIV care. “For three years I would go from my home in Oklahoma to Kansas to get my blood work done for fear of anyone in Oklahoma finding out,” he says. Chesbro is of Cherokee and Lumbee heritage and now speaks publicly about HIV/AIDS in hopes of raising awareness among his community.
Tommy’s diagnosis allowed him to access care and take control of his health. But 25 percent of American Indians and Alaska Natives living with HIV are unaware of their infection, according to the CDC. That’s higher than the 18 percent of Americans who have undiagnosed HIV/AIDS.
Shana Cozad, who belongs to the Kiowa tribe, believes stigma prevents people from getting tested. “You hear of people being disowned by their tribes because they have HIV,” she says. Shana was 21 and a new mother when she was diagnosed with HIV in 1993.
“I even had my own stigma about who gets the disease and what they might look like,” she says. “I wasn’t an I.V. drug user, I hadn’t slept around and didn’t associate myself with those kinds of people.” Shana tested positive for HIV after her boyfriend revealed he had AIDS.
Late diagnosis may be why many American Indians and Alaska Natives learn of their infection when they have already progressed to AIDS. Studies show that being diagnosed later leads to an earlier death. And despite vast improvements in HIV treatments since the epidemic began in 1981, American Indians and Alaska Natives suffer worse outcomes compared with other racial and ethnic groups in the U.S.
Poverty rates among American Indians and Alaska Natives are higher than any other group in the U.S., a known risk factor for HIV infection. More than a quarter of the native population lives in poverty compared with 14.3 percent of Americans over all, according to census data. In some urban areas, 50 percent of American Indians are living in poverty.
High rates of untreated sexually transmitted infections among the population are a concern for the continued spread of HIV. “We have very high STD rates,” says Jumper-Thurman, “especially chlamydia and gonorrhea.” Rates of gonorrhea are almost five times higher than rates for white Americans, according to the CDC.
Isadore is now an active HIV/AIDS advocate. He worked with the San Carlos Apache tribal council to pass a law that protects the confidentiality of people living with HIV. But he hopes for a future where HIV-positive American Indians and Alaska Natives are able to speak openly about their status.
“We’re an invisible population compared to the rest of America,” he says.
Until HIV-positive American Indians and Alaska Natives are properly accounted for in HIV surveillance systems, they will continue to be the invisible side of the HIV/AIDS epidemic.
Dr Seema Yasmin, a physician epidemiologist who served as a disease detective in the Epidemic Intelligence Service at the U.S. Centers for Disease Control, has investigated epidemics in maximum-security prisons, American Indian reservations and healthcare facilities. Since graduating from Cambridge University Medical School, Yasmin has worked in Botswana, Kenya, England and the U.S. She is a fellow in global journalism at the University of Toronto’s Munk School of Global Affairs.