0U[OPZ0ZZ\L! Greetings from the NNAAPC Board of Directors!.................... 2 Letter from President/CEO..........................2 NNAAPC Recognizes Sharon Day with Honoring the Red Ribbon Award ........................3 Community Advisory Council Meets ......................5 Compassion, Action, and Healing: Working with Injection Drug Users in Native Communities .......................7 A Way to Wellness: Locating and Understanding Native-Speciﬁc HIV/AIDS Data ..................... 8
by Ron Rowell (Choctaw/Kaskaskia)
date th the inception of NNAAPC to a summe summer’s day back in 1986 when, as board president of Friendship House Association preside of American Ame Indians in San Francisco, I attended a qu quarterly meeting of the Bay Area Indian agenci agencies. A speaker had been invited, Dr. Kathleen Toomey, Too a post-doctoral researcher on STD’s in American Amer Indians and Alaska Natives at the UC San Francisco Fr School of Medicine (now Director of the Georgia Department of Public Health). She sspoke of the high rates of STD’s in our population, population and at the end of her talk, asked us passionately, “W “What are you doing about this? This is a direct threat threa with the growth of HIV!” I honor Dr. Toomey for her commitment to the prevention of HIV/AIDS and an STD’s in Native America early in the epidemic an and for inspiring me to act.
As I sat there, I thought to myself, “I’m Choctaw, underemployed public health professional, I’m an underem and I’m gay. I h have a special responsibility here.” I walked up to h her and said, “I want to help.” She put 2012 International me in touch w with Dr. Ben Muneta at the Navajo Indigenous Pre-Conference Nation who sh she knew. I called, introducing myself on HIV & AIDS..................... 10 and telling him that I wanted to do something about STD/HIV STD/H prevention. Then I asked him Survey Reveals Existing Practices and for his help. B Ben and I spoke for about an hour Attitudes in Two Native in that first cconversation. I heard painful stories Communities ........................ 12 about young gay Navajo men coming to see him, knowing nothing not about STD/HIV prevention and Announcing the First some already alread infected. He told me the story of a National Native Youth young man who thought a sock was a condom. Council on HIV/AIDS! .............. 14 He was frus frustrated at not receiving the kind of High Impact Prevention: support from fro the authorities that he needed. What Does it Mean for Indian I honor him for speaking out and ringing the Country?..................................... 15 alarm early ear in the epidemic. 2012 International Indigenous Pre-Conference on HIV & AIDS................................. 16
He agree agreed to help, and gave me a couple of names o of other Native physicians to speak with. In this way, I began developing a netwo network of Native physicians, nurses,
activists, and public health people around the country who could support the national effort, asking each for their help and for the names of others they knew who might be interested. Three of these people in the beginning, Carole LaFavor (Ojibwe), Phil Tingley (Kiowa), Marty Prairie (Lakota), and Willie Bettelyoun (Lakota) were living with HIV and chose to speak out publicly about their illness, making the reality of the disease in American Indians evident to those in denial. Carole passed last year. Phil passed on in 1991. Marty passed in 2001. Willie passed in 2003. I honor and bless their memory. Without them NNAAPC and the national focus on HIV in Native communities might never have gotten off the ground. Mona Smith, later the captain of NNAAPC’s national media program, made a film, “Her Giveaway,” in 1988 that featured Carole and it had a huge impact in Native communities. I honor Mona too for using her art to instruct and inspire early in the epidemic. There were many others over the years as well, outspoken and brave Native people living with and fighting HIV that are too numerous to name, but I honor them all. NNAAPC was truly a collective effort. The first elected board chair was the Chief of the Sak and Fox Nation of Oklahoma at the time and he was followed by Dana Ridling who served for many years in that role. I honor them both. At about that time, I needed a real job that paid real money, and by chance was – continued on page 4
had the honor of being elected as Chairman of the NNAAPC Board this summer, after Stacy Bohlen completed her term. First, I would like to thank Stacy for her tireless efforts in keeping HIV prevention and treatment as a priority for our communities over the years. She has been an amazing advocate and will continue to support NNAAPC’s work through her role as a board member.
For those of you who do not know me, I am Mandan and Arikara and currently serve as the Executive Director of the National Council of Urban Indian Health in Washington, DC. My career has been dedicated to serving the Native community and I have had the opportunity to work in several organizations, both tribal and urban, that promote health and development for our people. As we move through NNAAPC’s 25th year of service, we are excited and reinvigorated to continue the struggle of educating and advocating around the need for HIV/AIDS prevention and treatment services for Native Americans, Alaska Natives, and Native Hawaiians. Unfortunately, our communities have not defeated the epidemic that many consider to be well-addressed in the United States. Indian people are still affected by this disease in disproportionately high numbers, and it is up to us to continue the great work of those pioneers who 25 years ago decided that we needed to stand up against HIV and AIDS. I look forward to walking this journey with each of you. I know that there are challenges on the horizon, but one thing that I am certain of is that whenever Native people come together in unity there is no barrier we cannot overcome. I have looked to my family and community for strength throughout my lifetime and I am confident that my children will be able to do the same. Thank you for everything you do to support all of us who have been affected by HIV and AIDS, whether it is through our own experiences, the loss of a loved one, or the loss of a member of our community circle. Your work is valuable and sacred. Together, we will overcome. Respectfully, D’Shane Barnett (Mandan/Arikara) Chairman, National Native American AIDS Prevention Center
hirty years from the discovery of HIV marks the 25th anniversary of the National Native American AIDS Prevention Center. This is a historic year for a groundbreaking organization.
In times of economic hardships, NNAAPC is proud to say that we have weathered the storm. Knowing that three years ago, NNAAPC was considering closing its door, it speaks to the strength of an organization and the resiliency of its staff that we fought through in order to celebrate this anniversary today. And if this year is any indicator of what is to come, then NNAAPC will only continue to grow and expand the services that it is providing. During 2012, NNAAPC worked on 12 different projects from 9 different funders. We are proud of the diversity of funding sources and of our projects. Of note, is the addition of two new grants to our portfolio. NNAAPC was awarded two new grants from the CDC in August 2012 – one to work with tribal health departments on HIV testing and linkage to care efforts, and one to work with urban Indian health clinics on their STD testing capacity. NNAAPC also received funding from Indian Health Service, Office of Minority Health Resource
3L[[LYMYVT7YLZPKLU[*,6 – continued from page 2
Center, and the Office of HIV/AIDS and Infectious Disease Policy to host the International Indigenous Pre-Conference on HIV & AIDS as a satellite event of the International AIDS Conference in DC in July. This conference witnessed 146 people come from 13 different countries to share best and wise practices. It was a truly powerful two days!
every day, but they have vowed to never stray too far from NNAAPC. At the same time, as we say good-bye, we bid welcome to some new staff members. Michaela Grey (Diné) and Rachel Bryan-Auker (Kaigani Haida) will be joining the team this fall to help work on our existing and new projects.
During the same month, NNAAPC Board of Directors had the opportunity to sit down and have a meeting with IHS Director, Dr. Yvette Roubideaux. This is the first time such a meeting has taken place, and Dr. Roubideaux committed to ensuring that this communication remains open and that NNAAPC serves as informal advisors to the HIV prevention and treatment activities of IHS.
Please join NNAAPC to celebrate its anniversary – and meet some of our new staff. We will be hosting a reception to honor the 25th anniversary on Tuesday, September 25th, 5:30 - 8:30pm at the Sheraton Hotel Downtown Denver as part of the National Indian Health Board’s Annual Consumer Conference. We are pleased to say that the founder of NNAAPC, Ron Rowell, will be on hand to help put perspective on where NNAAPC has been over the last 25 years.
This year saw some changes in makeup of our NNAAPC family. A new board member, Edgar Villanueva (Lumbee), Executive Director of the North Carolina Indian Health Board joined the board. Officer elections were held, and D’Shane Barnett (Mandan/Arikara) was seated as Chairperson, Mary Helen Deer (Kiowa) was elected as Vice Chairperson, Edgar Villanueva was elected Treasurer, and Lurline McGregor (Native Hawaiian) will now serve as Secretary. Staffing changes are a natural part of growth for an organization and this year we bid farewell and good luck to some valued staff members. Hannabah Blue (Diné) left NNAAPC in September in order to pursue her Masters of Public Health at Harvard University, and Tony Aaron Fuller (Colville) accepted a position in Portland in order to be closer to his family. We will miss them in the office
I have had the pleasure of working for this organization for five years in varying capacities, including President/ CEO for three of those years. I know that 2013 will bring another set of changes – as change is the norm in the world of non-profit – including a new position for me inside the organization. But NNAAPC has shown that it can adapt and thrive. We all look forward to what the next decade brings as we continue to work to end this epidemic in Native communities, and thank you for your support for the past 25 years. An organization cannot exist this long without strong partnerships and support. So as we celebrate, we recognize you! Y
55((7*9LJVNUPaLZ:OHYVU+H`^P[O/VUVYPUN[OL9LK 9PIIVU(^HYK Each year, NNAAPC honors one Native individual who has made a significant and lasting contribution to HIV prevention efforts nationally, regionally, tribally, or locally with the Honoring the Red Ribbon Award. This year NNAAPC is pleased to recognize Sharon Day, one of the founders and current Executive Director of the Indigenous People’s Task Force in Minneapolis, MN. Sharon is a noted activist, author, singer, and artist whose accomplishments include establishing a 14 unit housing program for people living with HIV, serving on the Ryan White Planning Council and the Prevention Planning Council in Minnesota, coordinating the first International Two Spirit Gathering in 1988, and serving as lead walker for the Mother Earth Water Walk’s Southern Route in 2011. A reception will be held Monday, October 1st at Caesars Palace, 7:00pm-9:00pm (as part of the US Conference on AIDS) to recognize Sharon. Please join us in celebrating her groundbreaking work! Y
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recruited to run the HIV Antibody Testing program at the San Francisco Department of Public Health by an old colleague. Two weeks after I began, I tried to resign, wanting to spend my time working on starting the national HIV prevention program for Indians. The medical director at that time, Dr. George Rutherford, counseled me to stay, telling me that my ability to get support from Centers for Disease Control (its name at the time) for the project would be improved by my association with the SF Department of Public Health. He also gave me a day per week to work on the project. That was excellent advice. It turned out to be true. He too contributed to NNAAPCâ€™s existence with his generosity and insight and I honor him. There was no special outreach or programming at CDC at that time for people of color. Many people in the Federal health bureaucracy outside of Indian Health Service, and frankly many AIDS activists in communities of color, felt that our people were â€œtaken care ofâ€? by IHS. Part of the challenge was to change this perception. We also, as you can well understand, were invisible and considered relatively unimportant due to our population size and to cultural stereotyping. We had an ally in Asian/Pacific Islander AIDS activists who, due also to their smaller sized population at the time, were also considered less important. Understandably, the health emergency in the African American and Hispanic communities that was getting no attention had mobilized AIDS activists in those communities to demand a response without delay. At times it felt like we had to battle everyone to insure a place at the table. We did finally succeed, however, and received a multi-year contract from CDC in early summer of 1988 with Alaska Native Health Board as a sub-
contractor for the work there. Our doors opened in August 1988 in Oakland with a branch office in Minneapolis. Lori Beaulieu, a Dakota/Ojibwe nurse and activist headed that office. In Oakland, Andrea Green Rush took charge of establishing the newsletter â€œSeasonsâ€? and later became Director of Prevention. I honor them both. Other contracts followed. One day in 1991, Dr. Eric Goosby of the Health Resources and Services Administration called me to ask whether NNAAPC would consider starting a network of health services programs for HIV infected American Indians, Alaska Natives, and Native Hawaiians with HRSAâ€™s support. We agreed to do so and partnered with seven local and regional programs from New York to Hawaiâ€™i. I honor Dr. Goosby. We also started our own statewide project in Oklahoma, the Ahalaya Project, shepherded largely by Gloria Bellymule Zuniga, a Cheyenne nurse and longtime AIDS activist who now sits on NNAAPCâ€™s board. I honor Gloria. A sudden and unexpected change in priorities at HRSA in 1996 led to the cancellation of the grant supporting all these partners with only a two-week notice. This in spite of the fact that we had put Native-specific language in the Ryan White Care Act to insure HRSA would continue to support Native care programs. A team of Native AIDS activists including the fearless Gloria from the Ahalaya Project, Melvin Harrison from the Navajo AIDS Network, Pua Aiu from Papa Ola Lokahi in Hawaiâ€™i, and I camped out in Washington, DC for a week while the first ever National Native AIDS Conference in Portland was underway, roaming the halls of Congress every day speaking to whoever would listen to us, getting help from Sen. Inouyeâ€™s Chief of Staff and the Chickasaw Nation ambassador. We were also able to get behind the scenes support â€“ continued on page 4
Marty Prairie said that when times were hardest, being with his people at NNAAPC restored his strength and determination to serve Native Americans most at risk. Thanks to NNAAPC, especially all the early founders, for what you have meant to Marty and his family, affirming that we are all part of a larger family, and that our losses have not been in vain.â€? - Paul Arons
The Community Advisory Council meets via teleconference 4 times a year with one annual face to face meeting.
s part of the CDC-funded community mobilization grant, NNAAPC’s Community Advisory Council (CAC) met for their annual face to face meeting. This year the meeting was held in Washington, D.C. on July 20, 2012, prior to the International Indigenous Pre-Conference on HIV & AIDS. CAC members that were present include Tony Locklear (Lumbee), Elton Naswood (Diné), Isadore Boni (San Carlos Apache), Don Little (Absentee Shawnee/Seminole), Iona Long Soldier (Lakota), and Ashliana Hawelu (Native Hawaiian).
tribal clinics and testing sites; and advocacy around the National HIV/AIDS Strategy and how it affects Indian Country. Other conversations included discussion around Hepatitis C and its relation to HIV infection, and how NNAAPC could expand their services to help in Hepatitis C prevention. The Council also discussed what was happening in their own communities, as well as how social media has affected their outreach and prevention efforts.
The Council also celebrated the accomplishments of the project that took place throughout the country. Requests completed in Hawaii, Arizona, The Council met with NNAAPC staffer Tony Wisconsin, California, Montana and Philadelphia Aaron Fuller to review NNAAPC’s progress were highlighted. The Council continues to on the CDC grant. They discussed program market NNAAPC’s capacity building services in suggestions and brainstormed other areas in their own communities, as well as on a national which NNAAPC could build capacity around HIV/ level. AIDS prevention throughout Indian Country. NNAAPC wants to thank our Council for their Some suggestions that were generated included commitment to the organization, this project NNAAPC helping local agencies get tribal council, and their communities. If you would like to city council or state proclamations for National learn more about how to access free technical Native HIV/AIDS Awareness Day; doing more assistance to mobilize your community, contact work around agency/program sustainability; Vicki Peterson at VPeterson@nnaapc.org. Y confidentiality and HIPPA issues affecting local
Serving on the board of NNAAPC has afforded me the opportunity to connect to passionate, talented native leaders from across the country. I have enjoyed being apart of a group that provides and supports such vital services and programs to our communities.” - Edgar Villanueva (Lumbee) Board of Directors
“NNAAPC has come a long way. From the first group of Native community activists who trailed blaze in creating this national program that was inclusive of all indigenous populations in all 50 states, thank you. To the group of committed individuals who helped shape the program, thank you. The organization’s continued success will involve true commitment from its board and staff, responsiveness to the needs of its constituents and being accountable in the relationships to it’s funders, partners and supporters (community, advisors, and allies). Congratulations!” - Larry Kairaiuak 9LTPUPZJPUNVU[OL[O(UUP]LYZHY`VM55((7* – continued from page 4
from the Cheyenne Arapaho Tribe of OK and the Mashantucket Pequot Tribe of CT to lobby the White House. Back in Portland, NNAAPC staff and our allies got people to call the Secretary of Health and Human Services’ office at such a rate that I was called by the Secretary’s assistant to ask if we could stop since they could no longer conduct business on their switchboard. That passionate national advocacy and organizing effort by lots of people, tribes, and organizations eventually led to a restoration of the money. I honor all these allies. The last big struggle that I recall before I left NNAAPC was the effort to improve race/ethnicity reporting for American Indians/Alaska Natives in disease surveillance at every level: tribal, state, and federal, and to press for better coordination. This effort is ongoing and has lasted for many years, but has finally begun to bear fruit. It is essential for identifying patterns of disease in our population in order to prevent future epidemics. Keeping focused and never giving up is key to success, and one of NNAAPC’s strengths. HIV/AIDS looks very different now from when we began NNAAPC in the mid-1980’s. Another generation has grown up with AIDS as a fact of life. Fortunately, it is not killing at the same scale it was in the early days. Unfortunately, its diminishing lethality has led some to the attitude that it’s an inconvenience, rather than the very serious transmittable disease that it is. Thankfully, a vaccine may soon be available to prevent HIV. That would be a huge step in conquering the disease so long
as it is affordable and accessible to everyone. The general stigma concerning AIDS and people with AIDS seems to have improved over time in our communities, but it could still be improved further. The same could be said of the attitude toward Native American LGBTQ people. NNAAPC has led the way for 25 years, fighting our invisibility and the silly stereotypes that blind others to our needs and fighting to insure that our communities understand HIV/AIDS, how to prevent it using our own cultural expertise, and promoting supportive care and compassion for people with HIV/AIDS. It has also been a leader in the advocacy and organizing necessary to force the government to take responsibility for providing material support to those working nationally, regionally, and locally. I am very proud of the work NNAAPC has accomplished. I have been blessed by having participated in its work. I honor all those who ever worked for NNAAPC or volunteered to serve on the board and I apologize to you for not naming you personally. It is not a sign that your contribution was any less than any other. Finally, I am very grateful to know, as we mark the Silver Anniversary of NNAAPC, that the next generation of AIDS advocates has stepped in to continue the good work. Yakoke micha imolha! Thank you and good luck! Y Ron Rowell is the founder and was the first executive director of NNAAPC. He is currently CEO of the Common Counsel Foundation in Oakland, California.
*VTWHZZPVU(J[PVUHUK/LHSPUN!>VYRPUN^P[O 0UQLJ[PVU+Y\N<ZLYZPU5H[P]L*VTT\UP[PLZ “Knowing that in this work, we may not be able to prevent a young man or woman from using a needle to inject drugs to numb their pain or to escape, I can do my part to educate that individual to increase the chances that they do not contract or spread HIV or Hepatitis C.”
linton Alexander (Anishinaabe – White Earth Ojibwe Nation), Moorhead, Minnesota
An HIV prevention area often overlooked in Native communities is addressing the health needs and prevention strategies for those who inject legal and illegal drugs. Stigma, discrimination and a lack of awareness often minimize injection drug users (IDUs) to an invisible or ‘unseen’ population. Yet, according to the Centers for Disease Control and Prevention (2010), 12% of American Indian/Alaska Native men acquired HIV through injection drug use and 14% through combined MSM contact and injection drug use for a total of 26% IDU-related acquisition. For American Indian/Alaska Native women the number is an alarming 34% - the second highest compared to other races and ethnicities. Four percent of Native Hawaiian/ Other Pacific Islander men acquired HIV through injection drug use, and four percent through combined MSM contact and injection drug use for a total of 8% IDU-related acquisition. For Native Hawaiian/Other Pacific Islander women the number is a staggering 17%. A soon to be released NNAAPC publication, available in both electronic and print versions, Compassion, Action and Healing: Working with Injection Drug Users in Native Communities was developed in partnership with NNAAPC’s Native Syringe Service Advisory Group. The group is comprised of Native and non-Native individuals who are currently addressing injection drug use in their respective communities. The group’s collective expertise and experiences include: current injection drug users, individuals who are in recovery, drug treatment providers, traditional health advocates, health department representatives and social service providers. Their guidance and input helped to shape not just the document’s content, but intent as well. As Native people, we have been taught to share the lessons given to us, as a way to preserve
our traditions and culture. In essence, that is the goal of this guide: to share health information relevant to injection drug use as a way to prevent the spread of HIV and other harms in our communities. Though the use of front-line perspectives, skillsbuilding information and peer-to-peer knowledge sharing, Compassion, Action, and Healing intends to: • Provide an overview of injection drug use and the risks associated with it, • Provide an overview of harm reduction approaches and services for IDUs, • Generate community dialogue, and help create services and linkages for Native IDUs. Communities, as a whole, may harbor negative judgments and feelings toward people who use drugs. For many reasons, there may even be feelings of embarrassment, anger, frustration and hopelessness when thinking about the negative impact substance use has had on our people. As a result, we may choose to ignore the reality of the situation. However, if we choose to ignore the dangers of injection drug use among Native people, we are putting those who inject drugs, those who are sexually active with IDUs and our entire community at risk for HIV and other diseases. If we have learned anything from our collective past, our silence will not protect us from harm. Compassion, Action and Healing will offer solutions and positive examples of how lives can begin to be transformed for the better. There is one person that stands out in our community, a woman who for years used drugs intravenously and reconnected with traditional ceremonies, and today facilities a monthly women’s talking circle, and worked diligently to obtain her Associates Degree for Drug and Alcohol counseling and education. This woman is – continued on page 10
Congratulations to NNAAPC, your staff, and the board - on your accomplishments and hard work! Bravo!” - Antony Stately
3VJH[PUNHUK<UKLYZ[HUKPUN5 Long before the “written” word was imposed on us, we spoke to one another with vivid stories and images. From the winter count buffalo hides of the Great Plains to the Khipu (knotted strings) of the Incas, in creative and diverse ways, we recorded and distributed information we knew would be important to our descendents and to our communities. The concepts of detailed data are not new to indigenous Americans; however, the forms of creating, sharing and storing data have changed dramatically through history. In the digital-age it is now vitally important to continue to keep our people well-informed, especially on matters of health, and to support local efforts to gather, monitor and present health data in and about our communities. Health literacy on the individual-level, is the capacity to access and understand basic health information we need to make decisions on well-being. This understanding has been linked to a person’s overall health, even more than a person’s age, income, employment status, education level or race (American Medical Association, 1999). In the same way, our communities and leadership need the advantages health literacy brings on a group level. Health and wellness data inform program development, inter-tribal collaborations to address disease, health policy decisions and funding allocations. Community-wide health literacy can also better prepare us to think about the broader impacts of health information. Poor health literacy has had serious human and economic consequences in Indian Country. Deficiencies in access to health information, services and technology can ultimately lead to lower usage rates of preventive services, less knowledge of chronic disease management, higher rates of hospitalization and poorer reported health status (Berkman, et al., 2004). Our tribes, corporations, clinics, departments and organizations can work to prevent these consequences by working to understand and use the surveillance data available to us.
It is with this in mind that NNAAPC began a project funded by the National Library of Medicine by reframing the concepts of epidemiological data, health literacy and data surveillance from a Native perspective. To enrich and add depth to the publication that is the foundation for the project – “A Way to Wellness: Locating and Understanding Native-Specific HIV/AIDS Data” – NNAAPC commissioned four acclaimed and innovative Native American artists to produce original pieces. They were simply asked to think about the impact of HIV on Indigenous communities over the years, and the value of health information to facilitate healing and well-being. Art has always been a component of healing and communication, and as an integral part of the book and associated trainings on the topic, the art pieces were presented with quotes from the artists’ statements. These quotes served as foundations for discussions on the importance of talking about HIV and AIDS in culturally appropriate ways, the central place of historical experience and community strengths with epidemics like HIV, Native perspectives on communicating information, and taking a holistic approach to addressing health literacy.
The publication also addresses the importance of data collection for Native communities while acknowledging some of Health disparities in Native communities are well documented, the challenges, including who actually owns but addressing the issues requires us to look at our approaches the data collected in a sovereign nation. Data through a strengths-based lens. We can draw from the Sharing Agreements are suggested as a tool knowledge and skill already present within our communities to protect a community’s autonomy while • to access and use HIV and AIDS epidemiological allowing local data to be aggregated generally information for the benefit of all Native communities. • to increase knowledge of culturally responsive resources These agreements help build trust, ensure respect and allow for collaboration between for Native and non-Native service providers diverse Native and non-Native communities. • to support efforts to become more informed “A Way to Wellness” provides explanations consumers of health information. of epidemiology language to ensure accurate
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interpretation. It lists numerous health data sources and provides case studies to demonstrate how organizations use data.
Although the project focuses on HIV and AIDS health data, the discussion and framework can certainly apply to any area of wellness our communities strive to address - diabetes, obesity, tobacco, physical activity, aging, etc. We can move toward the broader goals of building cultural approaches to health, engaging community strengths and improving surveillance data gathering through building our health literacy skills, both as individuals and as sovereign nations serving our people.
Kirb Kirbieleya â€œEyelashâ€? Platero â€“ Din DineÂ´- 2012 â€œA ttestament to the resilient capacity we as Indigenous peoples cap po possess and must use to overcome even the most seemingly ev im impossible challenges in life. For rresiliency is our birthright.â€?
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An online version of the book is expected in the coming months.
Bernice Akamine â€“ Native ive Hawaiian â€“ 2012 12
REFERENCES CITED: American Medical Association. (1999). Report on the Council of Scientific Affairs, Ad Hoc Committee on Health Literacy for the Council on Scientific Affairs. Journal of the American Medical Association, 281(6), 552-7. Berkman, N. D., DeWalt, D. A., Pignone, M. P., Sheridan, S. L., Lohr, K. N., Lux, L., et al. (2004). Literacy and health outcomes: Summary, Evidence Report/Technology Assessment No. 87 (AHRQ publication; no. 04- E007-1). Rockville, MD: Agency for Healthcare Research and Quality. Y
â€œKaona: hidden meaning or veiled ed references revealed when a person n is ready to accept the burden off knowing, or when it is essential forr that person to know.â€?
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â€œUntitledâ€? Alistair Andrew Bane â€“ Shawnee â€“ 2012 â€œOur health is a combination of our mind, body and spirit, and it is important for every human being to feel loved, valued and cared for in order to be well.â€?
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â€œTelling the story of the transference of indigenous knowledge healing methods from one person to another, from one tribe to another, from â€“ continued on page 10 one community to another, from one culture to another.â€?
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It seems unbelievable I have known and have been part of the family of NNAAPC for 25yrs. I did my internship at NNAAPC’S HIV/AIDS Case Management Program in Oklahoma City,and I have also been part of several their Two-Spirit programs and their current Community Advisory Council. NNAAPC’S MISSION ‘To Stop the spread in Native Country’ is working as I am sure countless lives have been spared the ravages this disease does to the person and their surrounding family. So, I can go on and on saying good words about the organization and their great leadership and until there is a cure I am sure NNAAPC will continue fighting for our people. I am thankful they are around.” - Don Little (Absentee Shawneee)
a positive role model for other Native women in the Los Angeles community. She demonstrates her strong beliefs of helping others and giving back to her community. Antonia Osife (Pima), Los Angeles, California For more information please contact Matt Ignacio (Tohono O’odham) MSSW, Capacity Building Liaison at firstname.lastname@example.org or 720-382-2244, ext. 313. Y
If you know someone who injects drugs, here are 3 things they can do today to promote their health and prevent the spread of HIV and other diseases: 1) Use a new, sterile syringe each and every time they inject. 2) Properly dispose of used syringes in a punctureproof container clearly marked as containing “biohazardous” material. 3) Use condoms and lubricant when sexually active.
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n July 20th, 2012, representatives from 12 countries including: Canada, New Zealand, Guatemala, Mexico, Bolivia, Chile, Australia, Honduras, Ecuador, Dominican Republic and the United Sates convened at the Four Points Sheraton in Washington D.C. for the 2012 International Indigenous Pre-Conference on HIV & AIDS! This two-day pre-conference event preceded the start of the 19th International AIDS Conference, which was held several blocks away at the Walter E. Washington Convention Center. The pre-conference theme, “To See and be Seen,” was intended to increase the global visibility of indigenous peoples and the impact of HIV – as well as create a forum for participants to network, strategize and cross share HIV-specific knowledge. Other objectives included: • Advancing knowledge of culturally appropriate HIV prevention activities. • Composing a document of lessons learned intended for government stakeholders. • Developing a plan for the production of tools between Indigenous and non-Native entities. These objectives were detailed by the International Indigenous Working Group on HIV & AIDS (IIWGHA), who organized in December of 2011 to begin planning for the pre-conference – as well as other related activities to be conducted at the International AIDS Conference. Members of the pre-conference planning committee represented Tribal nations from Arizona, California and New York. Representatives from international Indigenous communities included: New
0U[LYUH[PVUHS0UKPNLUV\Z7YL*VUMLYLUJLVU /0= (0+: – continued from page 9
Zealand, Canada and Guatemala. Some of the conference highlights included: • Daily morning and evening prayer circles. • An opening panel presentation, “Indigenous Leaders Living with HIV.” • Panel presentation from US governmental representatives: Dr. Yvette Roubideaux (Rosebud Sioux), Director of Indian Health Service and Arizona Senator Jack Jackson, Jr. (Navajo), US President’s Advisory Council on HIV/AIDS. • Presentation on “HIV/AIDS in Mexico” • Presentation on “Criminalisation and HIV” • Session on “Meaningful Involvement of Women Living with HIV.” • Panel presentation on, “Indigenous Youth are the PRESENT” • Presentations addressing the issues of: those living with the virus, research practices, transgender communities and Two-Spirit/ LGBT issues. • Closing remarks from Dr. Butler-Jones, Chief Medical Officer of Health, Canada Other highlights from the conference included the construction of a teaching lodge for conference participants, placed in the lobby of the Sheraton Four Points. The lodge, erected by the Canadian movement, “Visioning Health – Positive Aboriginal Women’s Perceptions of Health, Culture and Gender” included poetry, photos and essays displayed inside the lodge. It is important to acknowledge and thank the preconference sponsors for such a successful event: Office of Minority Health Resource Center, Indian Health Service HIV/AIDS Program, Office of HIV/AIDS and Infectious Disease Policy (through Abt Associates), University of Ottawa, Canadian Aboriginal AIDS Network and the National Native American AIDS Prevention Center. Thank you to these and other organizations for the continued support in combating HIV for all our indigenous communities! Lastly, the pre-conference activities came to a celebratory close with a community round dance and cultural exchange, hosted by the D.C. Native
community and other local, national and international partners. This was held on the evening of July 21st at a local venue, and was an excellent way to take time to celebrate, dance, socialize and have fun! Many of the pre-conference participants and organizers attended, as well as the local community – to which many attendees wore/represented their Indigenous-specific regalia. Exhibits of traditional songs, dance, music and chants from Australia, Hawaii, New Zealand, Chile, Guatemala and the Unites States also took place at this event. Y
NAAPC, in partnership with The Legacy Project at the Fred Hutchinson Cancer Research Center with funding support from the Division of AIDS in the National Institutes for Health launched a project in November, 2011 to build the capacity of those government-funded sites engaging in HIV clinical research to appropriately and effectively engage the Native communities in and around Seattle, WA and Denver, CO. This project, titled Native American Engagement in HIV Clinical Research (NAEHCR) is the first time such an effort has been undertaken with a specific community of color, and will hopefully create a model for how researchers can halt the cycle of helicopter research in Native communities. A primary component of this project was to work with the local communities to create an assessment approach that would capture this information on the local attitudes, perceptions, and knowledge about HIV, HIV treatment and HIV research in a respectful way. The information would be used to construct a training for local researchers and to share with the urban Native communities in Seattle and Denver. A group of Native community consultants were recruited from the local communities to help inform the process, and serve as liaisons to local gatekeepers in both sites. The formative evaluation included individual surveys that were conducted, beginning March, 2012, with self-identified, Native community members who were at least 18 years old and who spent a significant amount of time in Denver or Seattle. There were a total of 31 questions on the survey (11 of which regarded demographic information) designed to measure general attitudes and practices about healthcare, HIV, and clinical research. Respondents were asked to either respond to simple yes/no questions or select their answers from a list of potential responses. NAEHCR staff recruited individuals during local community events (pow wow, gatherings, HIV awareness events, etc.). A total of 115 surveys (61 in Seattle and 54 in Denver) were collected by the end of April. The results of four questions are listed below in Tables 1-4. Table 1. Sources of health care 'XULQJWKHSDVWWZR\HDUVZKHUHKDYH\RXXVXDOO\JRQHIRU KHDOWKFDUH" Q ,QGLDQ+HDOWK6HUYLFH8UEDQ,QGLDQFOLQLF +RVSLWDOFOLQLFQRW,+6RUWULEDO 7ULEDOFOLQLF 7UDGLWLRQDOKHDOHURUDGYLVRU 3ULYDWHGRFWRUÂśVRIILFH +RVSLWDOHPHUJHQF\URRP :DONLQFOLQLFRUÂł'RFLQDER[Â´ 2WKHUFRPPXQLW\FOLQLFHJFRPPXQLW\RUJDQL]DWLRQQRW DIILOLDWHGZLWK,+6RUWULEH +HDOWKPDLQWHQDQFHRUJDQL]DWLRQ+02 2WKHU ,KDYHQRWUHFHLYHGKHDOWKFDUHLQWKHSDVW\HDUV
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Table 3. Prevalence of community-based discussions around health concerns 'R\RXUHJXODUO\KHDUWKHIROORZLQJLVVXHVGLVFXVVHGLQ\RXUORFDO 1DWLYH$PHULFDQFRPPXQLW\"Q $FFHVVWRKHDOWKDIIRUGDEOHIRRGV $OFRKRODEXVH &DQFHU &KLOGKXQJHUDQGPDOQXWULWLRQ 'HQWDOKHDOWK 'HSUHVVLRQDQ[LHW\VXLFLGHDQGRWKHUPHQWDOKHDOWK LVVXHV 'LDEHWHV 'RPHVWLFYLROHQFH +,9$,'6 ,QMHFWLRQGUXJXVHHJXVLQJV\ULQJHVWRLQMHFWGUXJV KHURLQRUPHWKDPSKHWDPLQHV 1RQLQMHFWLRQGUXJXVHHJPHWKDPSKHWDPLQH SUHVFULSWLRQGUXJVPDULMXDQDFRFDLQH 2EHVLW\ 8QFOHDQRUXQVDIHOLYLQJHQYLURQPHQWVKRXVLQJ QHLJKERUKRRGVHWF
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These simple tabulations represent directional signs that can help steer community-based prevention efforts across a range of health issues and concerns, and analysis is being conducted on the rest of the survey data.
However, we can look at this data and begin to construct prevention tactics that: 1.) incorporate sources of health care information, such as IHS or
Urban Indian clinics, into HIV planning, service delivery, and capacity building; 2.) incorporate traditional care into Western prevention and treatment strategies, and work with traditional healers and advisors to ensure that they are incorporated into the circle of care in a respectful and appropriate manner; 3.) continue broad-based community education efforts to guarantee that health information that is passed on from family and friends is accurate; 4.) continue communitylevel activities (such as health fairs, educational forums, testing events) in order to combat the high level of community stigma and increase the frequency of discussions around HIV; and 5.) continue efforts to increase HIV testing (in clinical and non-clinical environments) to increase the numbers of Native people who have received an HIV test. Obviously, more research is yet needed to continue to explore the scope of HIV attitudes, and how they are contributing to rising HIV incidence in American Indian, Alaska Native, and
Native Hawaiian communities. The research should, of course, be firmly grounded in the needs of the community, and utilize a participatory approach to ensure that all parties benefit from the research conducted. As aforementioned, broad-based community efforts are still needed to increase knowledge and raise awareness about HIV and those risk behaviors that can lead to transmission. Even more so, efforts should be taken to promote healthy discussions about high risk behaviors (including unprotected sex and injection drug use) and the impact of HIV between care providers and their patients, and friends with friends, and family members with family members. By tapping into the existing trust and relationships that are thriving in communities, prevention workers and health care providers cannot seek to re-invent a wheel – they can utilize trusted pathways of knowledge and information to diffuse positive, strengths-based messaging around HIV, health and wellness. It should be the goal of all members of a community to end this epidemic. Y
4VYLHJRUV^SLKNTLU[ZHIV\[55((7* “Congratulations on your 25-year milestone. The work and dedication of NNAAPC and its staff, past and present, has made significant impact in fighting HIV/AIDS among our native people. The NNAAPC has achieved a lot in 25 years and still continues to grow. On behalf of ITCA, I wish you resounding success in the years ahead. Ahééhee” - Gwenda Gorman “Congratulations NNAAPC on your 25 years of service to Indigenous peoples of America. Without you, my tribe would not have taken the necessary steps forward in preventing and treating HIV/AIDS. Wishing you continued success!” - Isadore Boni “Congratulations to you and all of your staff on 25 years of excellent service!” - Jutta Riediger “Awesome! Congratulations! I appreciate NNAAPC’s continuous efforts for our Native People!” - Tanya Baird “I extend my congratulations to Native advocates and activists!” - Mary Bowers “This is certainly a milestone. I hope the success of our individual and collective work will put us all out of business but, in the meantime let’s continue to do what only we can do in our very own communities.” - Goulda A. Downer “While time is important, milestones should be measured not by the passage of time, but by accomplishments. NNAAPC has a strong and powerful history of reaching out to communities, advocating for Native health, creating a collective voice, and for providing support for our people where none had existing previously. NNAAPC’s accomplishments over the past 25 years are notable, and will only compliment the work that they are yet to do!” - Stacy Bohlen “Congratulations NNAAPC on your 25 year anniversary! Hugs to all of you. NNAAPC’s success has been predicated on its commitment to meeting the needs of the community it was established to serve. Its success and longevity now and into the future will be assured as long as there is trust, respect, inclusion and reciprocity throughout the organization, community and all partners who are engaged in this important work.” - Laura Oropeza
NAAPC, in partnership with the Native Youth Sexual Health Network (NYSHN) - an organization by and for Indigenous youth that works across issues of sexual and reproductive health, rights and justice throughout the United States and Canada, are proud to launch the first National Native American Youth HIV/ AIDS Council in the United States! This national youth council aims to address the issues surrounding HIV and AIDS, and how these issues impact our Native communities. As stated by Matt Ignacio, a NNAAPC co-coordinator of the youth council, â€œYouth involvement is one of the key ingredients that will change the course of HIV for all of our communities. The partnership between Native Youth Sexual Health Network, the newly created National Native American Youth Council and NNAAPC, is sure to raise more awareness, inspire change and help reverse HIV infection rates for all Native peoples.â€?
Additionally, the youth council will address the following: â€˘ Create a national forum where youth can speak about the current state of HIV prevention in Native communities â€˘ Create opportunities for meaningful engagement of Indigenous youth in national prevention and advocacy efforts â€˘ Establish courses of action and primary activities that are in line with the missions of NNAAPC and NYSHN Brandi Yant, a youth council member from Florida stated, â€œTo me, being on the National Native American Youth HIV/AIDS Council means that I may have a chance to make a difference, that I may get one more opportunity to educate at least one more person on how to protect themselves. Education is the most important thing to me, because if we donâ€™t teach the next generation how to protect themselves, then who will?â€? Brent Huggins, a youth council member from Oklahoma had the opportunity to attend part of the International AIDS Conference in Washington D.C. and stated, â€œIâ€™m looking forward to working with fellow Native youth to begin a conversation of prevention and awareness of HIV/AIDS in our communities. Iâ€™m excited to be a part of the vital change needed to reduce the infection rate of HIV/ AIDS within Indian Country. Iâ€™m honored to be working towards positive solutions to combat HIV from an Indigenous perspective.â€?
The youth council members were selected from an applicant pool of young leaders who all demonstrated a passion for the work. We are excited to congratulate The newly created youth council would not be possible the following National Native American Youth HIV/ without the support of the Indian Health Service and AIDS Council members: National Indian Health Board. The youth council â€˘ Allen Felix - Confederated Salish and Kootenai members have already been participating in monthly Tribes conference calls â€“ and will convene in Denver at NNAAPCâ€™s office for their first face-to-face meeting on â€˘ Jordan Heideman â€“ Cheyenne River Sioux September 21-23, 2012. Stay tuned as we bring you â€˘ Brent Huggins - Cherokee of Oklahoma more updates and developments from these young leaders on their new journey! â€˘ Shea Norris - Oglala Lakota â€˘ Brandi Yant - Muskogee Creek Each youth leader will serve one full year and will provide NNAAPC and NYSHN guidance on how to create and craft youth centered prevention and policy strategies, as well as direct community impacts.
For more information about the Native Youth Sexual Health Network, please visit www. nativeyouthsexualhealth.com. For more information about the National Native HIV/AIDS Youth Council, please contact Matt Ignacio (Tohono Oâ€™odham), Capacity Building Liaison at extension 313. Y
/PNO0TWHJ[7YL]LU[PVU! >OH[+VLZP[4LHUMVY0UKPHU*V\U[Y`& What is HIP? The National HIV/AIDS Strategy (NHAS) was released by the CDC in 2010. Two years after the release of the Strategy, we are now sitting at the threshold of a new framework for conducting HIV prevention called High Impact Prevention (HIP). High Impact Prevention is a new way of planning and implementing prevention strategies in order to ensure any efforts will have the greatest impact on the greatest number of high risk individuals. HIP is designed to double the HIV prevention efforts by increasing the focus on high risk populations, reaching more people with fewer resources. The components of HIP are:
early treatment, which reduces the risk of transmission of the virus to others. It also allows for prevention programs targeted toward partners of people living with HIV. Linking people to care highlights the importance of biomedical interventions. Treatment advances have changed the outcome of most infected with HIV from early death to the likelihood of a healthy, long life of managed care for a chronic illness. HIV treatment as a primary form of HIV prevention will surely be gaining more popularity as more and more people are testing positive, accessing HIV treatment, and discussions about pre-exposure prophylaxis explore how to bring this method to the general population.
• Effectiveness and cost: interventions must demonstrate they reach the targeted population Another proven and scalable intervention is the distribution of condoms and sterile syringes. Providing in the most cost efficient way possible. condoms has been a staple of HIV prevention • Feasibility of full-scale implementation: efforts and continues to prove effective, along with interventions must be practical to implement instructions on proper use and application. Providing on a large scale. sterile syringes for targeted populations in a nonjudgmental and non-threatening way has been • Coverage in the target populations: scientifically shown to reduce HIV infection among Interventions should reach the most people injection drug users. possible in the targeted population. Another scalable intervention is social marketing. • Interaction and targeting: Combine This effort complements any localized or structured interventions to work effectively together to reach the most–affected populations in a given intervention program by promoting healthy community norms that support HIV testing, combat area. stigma or provide support for PLWHA. Social • Prioritization: Select the intervention that will marketing has the opportunity to reach a very large have the greatest overall potential to reduce audience with relatively few dollars. infections. In times of economic hardship, HIP is forcing many How Will HIP Affect Indian people to make hard decisions about current and Country? traditional prevention strategies. Tribes, health departments, CBOs all have to ask themselves, “Is what The NHAS and HIP have already impacted funding we are doing having the greatest impact based on this streams and the way in which decisions-makers are new criteria?” approaching broad-based prevention efforts. HHS One intervention that has been shown to meet all the created the 12 Cities Project (that increases prevention HIP criteria is HIV testing. Testing has been and always efforts and monies to the 12 cities in the US with the greatest AIDS prevalence) as a component of its HIP will be a cornerstone in any HIV prevention plan. philosophy. The state health departments recently Testing identifies those who are unaware of their HIV witnessed an overhaul in their flagship funding from infection and facilitates linking them to care. Testing efforts complement other programming and facilitate the CDC. Many states with low seroprevalance saw decreased funding. The 12 Cities Project has heightened opportunities to diffuse risk reduction messages the focus of prevention efforts for urban areas, and and prevention materials. However, it is the early identification of those with the virus that will lead to – continued on page 16
– ccontinued from page 15
many resources are shifting away ma from less densely populated areas. As much of Indian Country lies within rural areas, and within states with lower seroprevalence, Indian Country may not seropr be part of the prioritized coverage. This be seen as a call to action. This is an should b opportunity opportun for Indian Country to examine o the HIV prevention is conducted and th he way H begin beegin now to examine and adapt, rather than fall wayside. Too many Native programs falll by the w have already closed down – we cannot let this havve alread health heallth issue fall off the radar.
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Recent CDC show that the number Receent data from f of new infections among AI/AN people has neew HIV in increased between 2007 and 2010. This increased by 8.7% 8 is grea greatest percent increase when compared to atest per other races/ethnicities. 34% of Native women races/et who ac acquired cquired tthe virus did so through injection drug use. u This is i the 2nd highest percentage of IDU acquisition accquisition among women of all other races and ethnicities eth hnicities (CDC, 2012).
Strategies Strateggies must be devised to integrate HIV prevention messages with existing programs. preventtion mes STD/STI programs, substance abuse treatment STD/ST TI progra programs partner violence programs, program ms and intimate in like Sac Sacred cred Spirit Spir on White Earth, have shown how su successfully uccessfull HIV can be integrated into other prevention activities. HIV prevention can also be preven ntion acti integrated integraated into youth targeted programs, including teen pr pregnancy regnancy prevention and youth parenting programs. prograams. Communities Comm munities can c also examine who is at risk in the commun community by conducting a community assessment. understanding the nature of assesssment. Truly T the lo local will help program planners ocal epidemic epide justify justiffy decisions decisio to funders, target high risk populations popu ulations and a tailor programs to prioritize higher (esp. MSM, youth, and IDU). higher risk groups gr The most important strategy, and the one im shown have the most impact, is increased show wn to ha testing testing for HIV. H Routine HIV testing must become in clinics serving our become a priority p communities. While some are already on co ommunit board b oard with wit offering the test, far too many are not. n
Now is the t time to ask the question, “What can we do better?” “Who do we need to reach?” “How can we ensure that we are being effective?” Now is the time to mobilize our communities to ask and mobi answer answ the questions that will ensure appropriate and culturally responsive app programming, but also continuity of pr service. It is up to us! Y s
0U[LYUH[PVUHS0UKPNLUV\Z 7YL*VUMLYLUJLVU/0= (0+: On July 20, 146 representatives from 12 countries-- Canada, New Zealand, Guatemala, Mexico, Bolivia, Chile, Australia, Honduras, Ecuador, Dominican Republic and the U.S. -convened at the Four Points Sheraton in Washington, D.C., for the 2012 International Indigenous Pre-Conference on HIV & AIDS. This two-day pre-conference was held in conjunction with the 19th International AIDS Conference. The Pre-Conference theme, “To See and be Seen,” set the focus on the global visibility of Indigenous peoples and the impact of HIV, as well as create a forum for participants to network, strategize and cross share HIV-specific knowledge. Other objectives included advancing knowledge of culturally appropriate HIV prevention activities, composing a document of lessons learned intended for government stakeholders, developing a plan for the production of tools between Indigenous and non-Native entities. Some of the conference highlights included: • An opening panel, “Indigenous Leaders Living with HIV.” • Panel from U.S. governmental representatives Dr. Yvette Roubideaux (Rosebud Sioux), director of Indian Health Service, and Arizona Sen. Jack Jackson, Jr. (Navajo), U.S .President’s Advisory Council on HIV/ AIDS. • Presentations addressing the issues of those living with the virus, research practices, transgender communities, youth and Two-Spirit/LGBTQ issues. • Closing remarks from Dr. Rainer Engelhardt, Assistant Deputy Minister of the Infectious Disease, Prevention and Control Branch at the Public Health Agency of Canada Pre-conference participants also worked together to construct a traditional teaching lodge in the lobby of the hotel. “Visioning Health – Positive Aboriginal Women’s Perceptions of Health, Culture and Gender” included poetry, photos and essays displayed inside the lodge. It was a momentous occasion for the U.S. to host such an event. We are now looking forward to helping duplicate this success in two years in Melbourne, Australia – where the next Indigenous Pre-Conference will be held in conjunction with the 2014 International AIDS Conference. Y
Many thank to the Pre-Conference sponsors for such a successful event: Ofﬁce of Minority Health Resource Center, Indian Health Service HIV/AIDS Program, Ofﬁce of HIV/AIDS and Infectious Disease Policy (through Abt Associates), University of Ottawa, Canadian Aboriginal AIDS Network and NNAAPC.