HIV is undetectable in Shana Cozad’s blood, but she says her antiretroviral medication doesn’t deserve all the credit.
“In the Native community, when you’re sick, it isn’t that you just take a pill and you’re better,” says the 46-year-old Cozad, a member of the Kiowa tribe of Oklahoma who lives with her husband and children in Catoosa, a Tulsa suburb.
She recalls seeking help from the tribal elders. “Hey, I’m sick. The white-man doctors say I’m going to die,” she told them. The tribal elders guided Cozad to traditional healing ceremonies, overnight rites that last 12 to 15 hours. “Lots of sitting on the ground or on your knees and praying before a fire,” Cozad explains. The ceremonies helped her release the anger she felt toward HIV.
Cozad is one of nearly 4,000 American Indians and Alaska Natives (AIs/ANs) estimated to be living with HIV. Not all have been as warmly embraced and supported by their respective communities as she has been. Many AIs/ANs have encountered cultural, economic and logistical obstacles to getting tested and receiving the care they need, whether it’s pre-exposure prophylaxis (PrEP) to prevent HIV or antiretroviral treatment to fight the virus.
Although people who identify only as American Indian or Alaska Native make up about 1.2 percent of the U.S. population, they have always been part of the HIV epidemic, notes Alex White Tail Feather, executive director of the National Native American AIDS Prevention Center (NNAAPC).
The Denver-based nonprofit was founded in 1987 because, White Tail Feather says, neither the National Indian Health Board nor the National Congress of American Indians acknowledged the existence of gay Native Americans. Although not all Native Americans living with HIV are gay, the widespread association of the virus with gay men was an impediment. By 2006, however, the National Congress of American Indians approved March 20 as National Native HIV/AIDS Awareness Day, which was first observed in 2007.
The first HIV surveillance report by the Centers for Disease Control and Prevention (CDC), published in July 1982—before the virus had been identified and named—listed one AI/AN among the 452 cases reported to the CDC of Kaposi’s sarcoma, pneumocystis pneumonia and other opportunistic infections that would come to define an AIDS diagnosis. “I find that compelling,” says White Tail Feather, a member of the Kashia Band of Pomo Indians.
Because of the relatively small number of cases diagnosed each year, White Tail Feather worries that some people may brush off the notion that HIV is a problem for AIs/ANs. “Oh, there’s only 200 natives who have been diagnosed with HIV, and that’s really good” is not an uncommon refrain, he says.
“No, that’s not good,” White Tail Feather retorts. “What is not understood is that one individual who is diagnosed with HIV might have historical knowledge of the tribe. They might carry the oral tradition of the tribe.” Or that individual may be his or her family’s breadwinner or one of a dwindling number of people who speak a particular Native language. “You can’t measure that.”
Elton Naswood suspects that the number of AIs/ANs diagnosed with HIV may be higher than the CDC count, owing to misclassification. “A provider would look at them and think they’re Latino or Hawaiian Islander,” says Naswood, a member of the Navajo Nation whose older brother, Eldon, faced stigma on his Arizona reservation as a gay HIV-positive American Indian. Eldon died 20 years ago of AIDS-related illness.
Naswood, who lives in the Washington, DC, area, does capacity building for tribal agencies that deal with HIV. In addition to challenges helping those living with the virus, Naswood has encountered barriers to prevention, such as clinic pharmacists who don’t know how to prescribe PrEP.
According to the CDC, excluding whites and Asians, AIs/ANs have a lower rate of HIV diagnoses than other racial groups, but this could simply be due to the fact that a higher percentage of Native Americans living with HIV don’t know they have the virus. “The time between first diagnosis of HIV/AIDS infection and death is the shortest” among Native Americans compared with the other groups, points out Jessica Leston, an Alaska Native and director of the HIV/STI/HCV clinical programs for the Northwest Portland Area Indian Health Board (NPAIHB).
In 2013, the CDC estimated that 18 percent of AIs/ANs living with HIV didn’t know their status, compared with 13 percent of the entire U.S. population living with HIV. In addition, while annual HIV diagnoses among the general U.S. population declined 19 percent from 2005 to 2014, they rose by the same percentage among AIs/ANs during that decade, according to the CDC.
The reasons for these disparities between Native Americans and other ethnic groups are as complex as the Native American community itself.
Although federal agencies lump American Indians and Alaska Natives together as AIs/ANs, Native Americans are far from being of one mind when it comes to HIV. The federal government currently recognizes 567 tribes in 35 states, and “they are just as different as the 50 states have different policies and norms,” says Leston.
NPAIHB, the nonprofit tribal advisory organization Leston oversees, serves the 43 federally recognized tribes in Oregon, Washington and Idaho. “They operate very autonomously, and the tribes set their own public health priorities. HIV might be high on some tribes’ priority lists, but it might not be high on others’ lists,” she says.
Priorities are not the only differences that shape a tribe’s approach to HIV. “It’s very important that we work within the constructs of people’s religions and cultures and belief systems,” says Richard Haverkate, national HIV/AIDS and hepatitis C program coordinator at the Rockville, Maryland, headquarters of the Indian Health Service, a federal agency. “We can’t tell a community how they must do something.”
For example, the leaders of some tribes won’t even use the words HIV or AIDS, says Haverkate, a member of the Sault Ste. Marie tribe of Chippewa Indians, the largest federally recognized tribe in Michigan. “If you call the name out, it’s almost like you’re calling that condition forward,” he says. “You’re actually opening up that doorway for that bad thing to come to you.”
The Navajo Nation, second only to the Cherokee Nation in population, is an example of one such tribe whose leaders shun using such terms, Haverkate says. And yet, “they are leaps and bounds ahead of the rest of the country in the way they’re getting the work done,” he says.
#GettingItDone happens to be the hashtag for the Albuquerque Area Indian Health Board’s campaign to encourage HIV testing, and it’s been working. Even though the older tribal leaders avoid using the terms HIV and AIDS, “somehow they were able to get people to know what ‘getting it done’ meant,” Haverkate says. “It creates conversation, but it doesn’t make people feel any kind of stigma.”
Many of AIs/ANs don’t know they’re HIV positive because of that “ever-present stigma still attached to just the idea of testing for HIV,” he says. “It’s taboo in a lot of communities still.”
It’s been nearly a quarter of a century since Cozad learned that she has HIV. Over the years, she’s reached a truce with the virus. She credits her spiritual advisers, who “had to teach me how to approach this disease and approach my body in a positive way.”
HIV’s goal is not to kill her, since then it, too, would die, explains Cozad, one of the first Native American women to speak publicly about living with HIV. “And so it’s life, and you respect life. HIV is a teacher for me. It has transformed my life. It has humbled me. I don’t feel cured, but I feel healed because I’m at peace with this disease.”
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