HIV’s Impact On Indigenous People Is a Big Problem

The first Americans may also be the most invisible Americans. A recent survey by Reclaiming Native Truth, an effort to dispel myths and misconceptions about Native Americans, found that 40 percent of Americans don’t think Natives still exist. While nearly 60 percent believe the U.S. is “guilty of committing genocide against Native Americans,” only 36 percent of respondents believed Natives currently face a “great deal” or “a lot” of discrimination.

Misperceptions about Native Americans have real world impacts, including for those combating HIV among Native populations. Yue Begay and Jonathan Talamantes, who coordinate APLA’s Red Circle Project, say that ignorance plays an astronomical role in impacting the services available to Native communities. Founded in 2003, Red Circle Project is the only HIV-prevention program in Los Angeles County that specifically provides services to the Native American and Alaska Native community.

It offers testing and health navigation, helping Natives to connect with culturally-competent healthcare and other culturally-relevant services. In particular, the project focuses on providing services for gay, bisexual, and Two-Spirit men, and transgender individuals.

Talamantes says, “One issue we have in our community… in general, there’s hardly any data that’s specific for our communities. Oftentimes, we’re just an asterisk.” Meanwhile, the 2010 census notes that 2.9 million people (or 0.9 percent of the overall population) in the U.S. are American Indian and Alaska Native “alone,” while an additional 2.3 million people, or another 0.7 percent, are American Indian and Alaska Native “in combination with one or more other races.”

Those numbers may sound small, and Talamantes argues their population is often deemed “irrelevant… because we are such a small population, but we still are here.” Begay adds, “we have the highest misclassification rate of any other demographic. When someone looks at someone who has a darker skin, they might identify that person as Black… how does it impact programs like [ours]? Funding, it entirely depends on numbers and so when you get a high misclassification rate, you actually end up with a lower number of Native Americans” and less funding for programs.

Although many Americans imagine Natives only reside on reservations, according to the U.S. Census Bureau more than seven out of 10 American Indians and Alaska Natives now live in urban areas like Los Angeles and New York City.

“I’m an urban Indian,” Talamantes says. “I’m a second generation here in L.A. My grandparents came out off of the reservation in the ‘60s. So, my mother was born out here, and I was born out here. I grew up really involved in the Native community out here. There is a huge Native community… and there’s a ton of services for us.” But, he adds, “there are certain issues because we are off the reservation. With the Native community… it’s a huge diverse group of people. East Coast Natives are completely different from Southwest Natives, and Pacific Northwest Natives. We all come from our own individual cultures and backgrounds.”

Indeed, there are over 560 federally recognized American Indian/Native Alaskan tribes (and dozens more that aren’t federally recognized), whose members speak over 170 languages. Although they share some cultural similarities, Indian nations and tribes are also very different.

“In the urban environment, we’re lucky because it’s like a huge bouquet of cultures that are here and it’s a beautiful thing,” Talamantes says. “But it does make it a little difficult, too, because some folks are so far from their homes, their traditional homes. A lot of services that are offered on reservations, we aren’t afforded because we’re away from our homeland. The federal government is required to meet our basic human needs, and if we’re off the reservation, they’re not required to.”

“I’m not an urban Native,” Begay says. “I grew up in the Navajo Nation. I grew up on the reservation. I’ve been here for almost seven years going on eight — [and] I still experience culture shock. I’m used to hearing my language back home. I’m used to a different mode of thinking back home. I’m used to different values… it’s completely different, our notions of trust, our notions of healthcare.”

According to the Centers for Disease Control and Prevention, American Indians and Alaskan Natives accounted for 1 percent of the total new HIV diagnoses in 2016. Most new cases (81 percent) were among men, 77 percent of whom contracted HIV via male-male sexual contact.

Contrastingly, 69 percent of AI/AN women who contracted HIV did so via male-female sexual contact.

Although they accounted for a small percentage of the overall diagnoses, their rates are increasing: from 2011 to 2015, HIV diagnoses increased 38 percent among AI/ANs overall, and 54 percent among AI/AN gay and bisexual men. Native Americans are also more likely to see their condition progress to HIV Stage 3, or AIDS. In 2015, 53 AI/ANs died from AIDS complications (in 2016, 102 AI/AN people were diagnosed with Stage 3 HIV). Also problematic is the number of HIV-positive Natives who don’t know their status (only 81 percent of poz Native Americans people know they are positive).

Attempts to reach Native Americans with prevention messages often fail by not being culturally sensitive, which is why programs like the Red Circle Project are so important. “What we have been is a perfect example of what culturally-competent services are,” Talamantes says. “For us, we’ve always focused on community. As Native people, community is everything. Your interactions with the community, your role in the community, all that, it’s really big. It’s really important.… [Non-Native] healthcare, it’s about the self, it’s about the singular person. In a tribal community, it’s always about how that self, how that single person fits into the larger scheme of things.”

“For a program to be culturally competent with Native Americans and address HIV at the same time,” Begay adds, “it would have to know the history of the community and somehow incorporate that holistically, while also incorporating Western biomedicine into its services, like trying to find that balance. I think that’s another barrier… in general, there’s this clash always between our traditional medicines, our traditional healing versus Western medicine.”

That conflict has yet to be resolved, even on many reservations. Begay says, “On the Navajo Nation, there’s always this feud between medicine men and medicine women who are cultural practitioners and healers versus the doctors at the IHS [Indian Health Service]. It’s like there’s extreme racism between the doctors and our medicine people.”

And like many in the Black community, Natives have conflicted relationships with the medical profession because, as Begay explains, “throughout history, Native Americans have been experimented on.” Scholars like Jane Lawrence (in a 2000 issue of American Indian Quarterly) have reported on the thousands of Native women who were forcibly sterilized by the Indian Health Service during the 1960s and ‘70s. “So, you can kind of get a sense why Native people don’t trust Western biomedicine,” Begay explains.

Native medicine often relies on holistic approaches and natural-based remedies. “When you talk about harvesting medicine the traditional way, not only are you just harvesting medicine for medicinal purposes, but you’re also learning about creation stories about those plants,” Begay says. “You’re also learning about how they tie into your people as a whole… We have that level of respect for our cultural medicines, whereas in the bio-Western-medicine, it’s just something you extract, a chemical, a compound to manufacture into an injectable form or a pill.”

This makes many Natives even more skeptical of pharmaceuticals, whether it’s PrEP for HIV prevention or antiretrovirals used to treat HIV. So while Red Circle does support their usage, it also relies on other, more holistic and culturally-relative approaches.

“One of our tools that we have is our workshop series called Strengthening the Circle,” Talamantes says. The evidence-based approach utilizes the medicine wheel to talk about the importance of balancing spiritual, mental, physical, and emotional wellbeing. By connecting cultural touchstones with health education and sex ed, Red Circle is able to connect with Native American and Alaska Native clients on a deeper level.

“You can’t really address HIV within Native communities without first talking about sexual trauma,” argues Begay. “And you can’t talk about that without addressing historical trauma, intergenerational trauma. What culturally-competent, or culturally-responsive services look like in that sense, it would have to be a programing that deeply understood historical trauma.” The colonization of the Americas has, Begay says, since the beginning “been built on extermination of Native people.”

Wide-spread death in the wake of colonization was followed by broken treaties, forced relocations, and the Indian boarding school era. In the late 19th and mid 20th centuries, thousands of Native children were taken away from their tribes, given Anglican names and clothing, and forced to speak English and follow non-Native cultural practices — in an effort to assimilate Natives and endanger their culutural survival.

“What ICE is doing, detaining children, taking them from their parents? That is exactly what happened in the boarding school era of the mid-19th century,” Begay explains. “You actually had federal agents going into houses and taking children… and processing them into schools. They strategically placed children from different tribes with each other so we couldn’t communicate.”

Those experiences, even though they happened generations ago, continue to reverberate through time and influence current HIV outreach to the Native community, Talamantes explains. He recalls one HIV service provider in Seattle telling him the story of a relative who was sent to a boarding school. Although he’d been sent to the same school as his siblings, he wasn’t allowed to speak to them.

“Every once in a while, they would pass each other in lines,” Talamantes details. “The older brother would reach out to the younger brother and grab him and shake him and tell him, ‘This is your name. That [English name] is not your name. This is your name.’ That’s what we’re doing now in the field of HIV prevention in the Native communities: We’re all calling each other by our names. Yeah, we’re Native but we’re also — we’re Diné. We’re Lakota.”

“Identity affects behavior,” Begay adds. “Some people, they’ve made poor decisions, they quote-unquote, ‘feel lost’ because they don’t really know who they are.” The Red Circle Project helps connect lost Native Americans and Alaska Natives — particularly those making unhealthy decisions — with culturally-competent services, but also with their histories, their communities, their spirituality, and their identities. Reconnecting these pieces helps Natives feel more “whole,” which leads them to make healthier choices.

Just as many other communities continue to struggle with HIV stigma, Begay and Talamantes acknowledge it exists in Native American communities as well. “I will say there’s not as much as there was in the past,” Talamantes says. But it can still be shocking. “Sometimes folks won’t even look at us if we’re out doing outreach. Or people walk by with their kids, [saying] ‘Don’t talk to them. Get away from them.’ But, I’m starting to see a lot more folks that are coming up to me like, ‘Is the mobile unit here? Can we get tested?’ They’re asking for these services.”

Additionally, Red Circle is finding new ways to connect HIV prevention efforts to traditional Native teachings. “I love working with the elders in the community,” Talamantes says. “I mean they’re teaching me new things. They’re teaching me new ways of looking at the way we’re offering services. I had an elder come up to me and ask me, ‘Can I get one of your medicine bags?’ She was like, ‘The one with the condoms?’ I didn’t think about it that way at all until she said that to me. I’m like, Oh my God! That’s exactly what they are. That’s the medicine. That’s exactly what we’re giving people. Native communities, we consider a lot of things medicine, you know, those dances at those powwows, our prayers, our songs, those are all medicine. I think we’re doing a good job of breaking that stigma [by] relating traditional medicines with new school ideas.”

While recognizing the historical trauma that Natives have faced is critical, so is looking beyond it. “People love to focus on the trauma,” Talamantes warns. “They love to focus on all this hurt. And yeah, that is part of our story, but the other part of our story is our resiliency. We’re still here.”

Even after 500 years, and concerted efforts to first exterminate and then assimilate Native Americans and Alaska Natives, communities retain their tribal connections and respect for traditional values. As Talamantes says, “We’re still here and we’re the ones who are teaching each other our names now.”