HIV/AIDS in Native American and Tribal Communities: A Conversation with Hannabah Blue and Ro Li

CBA@JSI team members Ro Li and Hannabah Blue came together to discuss the topic of HIV and AIDS as it affects Native American and Tribal communities. Ro is new to the topic and attended the Circle of Harmony HIV/AIDS Wellness Conference, the longest running and largest conference on HIV/AIDS in Native American Communities, for the first time this past spring. Hannabah, who is Diné (Navajo), has been working in the field for almost 10 years and recently got back from attending the United States Conference on AIDS.

Ro: So Hannabah, what brought about your interest in working with Native American communities, specifically on HIV prevention?

Hannabah: It really started growing up as a gay person in a tribal community. There were not many LGBTQ role models or resources growing up. I left New Mexico and moved to New York for college and to be among other gay people. In college, I majored in gender and sexuality studies and journalism. I learned about theories, as well as stigma and discrimination, and how they actually affect individuals. After college, I started working at the National Native American AIDS Prevention Center. I applied what I learned in school and how HIV involves a confluence of discriminations: racism, sexism, homophobia, and classism. I found a place where I was able to work on issues that addressed people that I knew needed these resources back home — on reservations, but also in urban areas where there are many Native Americans.

Ro: You mentioned classism, sexism, racism, homophobia — what specifically makes it difficult to get access to care in Native American and Tribal communities?

Hannabah: There’s largely a lack of resources and specifically, adequate healthcare. The Indian Health Service (IHS) provides health services to many Tribal Nations, but is severely underfunded, at about half the need. Also, with close to 50 percent of Native American people who live in urban areas, there is a need for service providers across the country to be culturally competent. That is why I often include the two by saying Native American and Tribal, to honor Tribal Nations as well as those Native American people who live in urban areas.

Ro: It sounds like a dual dynamic that’s really dependent on where the Native American individual lives. In an urban area, you might have access to more and higher quality services, but the services may not be culturally competent. On the flip side, for the 50 percent who live in Tribal or reservation communities, the issue is not cultural competency, but rather access to resources or funding for HIV prevention and treatment.

Hannabah: That’s right. It’s complicated. Some IHS facilities are trying to just provide the emergency and acute services that are needed, let alone prevention services, including HIV prevention. Native Americans have the shortest time between HIV diagnosis and death, according to the CDC, and that definitely is a contributing factor. There are also disproportionate rates of Native Americans who are undiagnosed. So both of these really hit on the need for early diagnosis, access to HIV testing, as well as engagement into care and treatment across the HIV continuum. Services that are locally available, high quality, and culturally competent are a necessity.

What engaged you in this topic, or what interests you or surprises you? And what was your experience attending Circle of Harmony?

Ro: I grew up in Albuquerque, New Mexico for a few years and remember learning about Native American culture and being really interested in the traditions of the people who lived and thrived on this land before colonization.

Fast-forward seventeen years to March of this year, I was given the opportunity to travel to Albuquerque for the Circle of Harmony conference. At the conference, I provided technical assistance in a Social Media Lab, hosted by HIV.gov. Also, I did a photoshoot at the conference with Native American volunteers, including transgender women. Being present in that space was really powerful; I felt very appreciative of the opportunity to learn from elders and community members who were willing to share their stories. It was very inspiring to see so many people dedicated to building capacity in their organization and providing HIV preventative services to their communities.

You were recently at the United States Conference on AIDS in Washington DC. What’s happening on a national level in regards to bridging access to care to Native American and Tribal Communities? From your experience, could you share what JSI is doing to help resolve this issue?

Hannabah: The United States Conference on AIDS took place in Washington, DC last week. The theme was “Family Reunion” which is very fitting because it’s always a place where you get to reunite with so many people who have been working in the field that you don’t get to see often. There were several unofficial themes that came up during the conference including the importance of Pre-Exposure Prophylaxis or PrEP, addressing Hepatitis C coinfection among people living with HIV, as well the reminder that the HIV/AIDS movement was founded on protest, including around the meaningful inclusion of populations and voices. I’m still invigorated from the energy infused from the conference.

As for JSI, we are a CDC-funded Capacity Building Assistance (CBA) provider that can support community-based organizations in their HIV prevention, care, and treatment services. Previously, there were CBA providers that were Native-specific, but there are no longer any currently supported by CDC. This has been cited as a gap in helping to bring Native American and Tribal communities resources, national attention, and coordination. Being with CBA@JSI, it has been great to have this role again to help bring focus to the epidemic in Tribal and Native American communities.

The CBA@JSI team was also present at the Circle of Harmony conference and connected with various Native American-serving organizations by promoting culturally relevant technical assistance to enhance their HIV-prevention efforts. Arman Lorz, a CBA Specialist from the CBA@JSI team, and I facilitated an interactive session focused on communicating HIV and Hepatitis C coinfection information.

I often see that what is reflected as a lack of national priority for Native American communities in this field, is then felt and reflected on the local levels, including Tribal communities and Native Americans that live in urban areas. There is a trickle-down effect.

American Indians and Alaska Natives often band together with Asian Americans, Native Hawaiians, and Pacific Islanders, as they too have low numbers but large challenges in tackling HIV and AIDS. Is this something that you’ve witnessed or how do you see Asian Americans and Pacific Islanders being affected by HIV?

Ro: Yes, coming from Asian and Pacific Islander descent, I feel like there are similar challenges to overcome in regard­­s to cultural competency and prioritization of HIV preventative services. My scope is limited in regards to this issue, but that gives me all the more reason to read, explore, and learn more moving forward.

Based on our conversation today, it seems like there is A LOT of work to be done in this field, and a lot of challenges to overcome before any progress can be made. But I think taking the time to listen and have conversations like these is an important first step to understanding and becoming empathetic to the issue.

After working in this field for close to 10 years, do you have any key messages that you’d like folks to take away from this conversation? If they are interested in learning more, what are recommended resources to get up to speed on the issue of Native American and Tribal health as relates to HIV?

Hannabah: What I think people should take away from this is that while Native American and Tribal communities do not have large numbers within the epidemic (we make up less than 1 percent of new HIV infections), we do have great challenges to overcome in addressing the epidemic. We have conditions in our communities that make us vulnerable to infection, including high rates of substance use, poverty, sexually transmitted infections, and Hepatitis C, as well as lack of access to quality and culturally competent healthcare.

Very often Native American and Tribal Nations are not included in public health research and data, and consequently, national priorities, due to the diversity of our sovereign nations (there are 566 federally recognized tribes and many other state-recognized and nonrecognized tribes) and small numbers (we make up just over 1 percent of the U.S. population, according to data from the Census Bureau). We have so much to offer to the field and the movement. We have overcome many diseases brought from colonization, we have traditional healing methods that focus on holistic health, and we have very tightknit community values and strength.

I would also encourage people to be open-minded and learn more, as you mentioned. Here are some great resources for more information:

• Indian Health Services HIV/AIDS
• Urban Indian Health Institute’s HIV Resources
• National Indian Health Board’s HIV/AIDS Awareness Project
• Center for Disease Control and Prevention’s HIV Among American Indians and Alaska Natives in the United States
• We R Native Youth Resources

Ro: Thank you so much for sharing your experience and sharing those resources, Hannabah! I hope folks will feel inspired and compelled to explore more into this area.

Hannabah: Thanks for the conversation, Ro!

*This post was originally published on September 25, 2017, on JSI’s Medium Page.

Written by Ro Li and Hannabah Blue