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Seeing Red: Indigenous People and HIV in the United States of America

Seeing Red: Indigenous People and HIV in the United States of America. Karina L. Walters, MSW, PhD (USA) (Choctaw Nation of Oklahoma) Indigenous Wellness Research Institute (IWRI) Indigenous HIV/AIDS Research Training (IHART) University of Washington.

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Seeing Red: Indigenous People and HIV in the United States of America

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  1. Seeing Red:Indigenous People and HIV in the United States of America Karina L. Walters, MSW, PhD (USA) (Choctaw Nation of Oklahoma) Indigenous Wellness Research Institute (IWRI) Indigenous HIV/AIDS Research Training (IHART) University of Washington Strategic directions to overcome the impact of HIV on indigenous communities Panel Presentation at the XIX International AIDS Conference, July 24, 2012, Washington DC, USA • iwri.org

  2. AI/AN Demographics • We are here! 5.2 million AI/AN • 2.9 million AIAN alone • 2.3 million AIAN in combination with other races • 1.2 million report hispanic/latino ethnicity (23%) • Rapidly Growing. 2000-2010 AIAN pop grew by 26.7% vs. 9.7% • Projected to grow to 2% of population by 2050 • We are young. Median age of AIAN is 29 years vs. 37 years • The majority live off reservation/cities, but of all races, most likely live rural. • 22% live in AIAN land statistical areas • 40% live in rural areas compared to 16% of other race/ethnic groups combined • 60% + live in urban areas

  3. We are diverse. We have 565 federally recognized tribes and over 100 state recognized tribes • There is a Federal Trust Responsibility to ensure health for our people. • In addition to private/public options we are eligible for care under the federally funded Indian Health Service (IHS) • Health care services provided to 2 million AIANs by programs operated by IHS-- some are tribally operated or urban Indian Health centers (< 1% funding) and these programs collectively referred to as ITU facilities • State laws regarding reporting of HIV diagnoses apply equally to providers and laboratories serving ITU facilities as well as to other licensed organizations • ITU facilities may not be legally compelled to report HIV cases and voluntary HIV case reporting practices likely vary

  4. Released in July of 2010 • The first comprehensive • and measureable goals • Calls for a more • coordinated response • Refocuses existing efforts e Good…….. For the first time, we have a National Strategy addressing HIV and AIDS!

  5. More Good… “In pursuit of the National HIV/AIDS Strategy’s goal of reducing new HIV infections, we must intensify HIV prevention efforts in communities where HIV is most heavily concentrated. This requires that governments at all levels – Federal, State, local and tribal – ensure that HIV/AIDS funding is allocated consistent with the latest epidemiological data and is targeted to the highest prevalence populations and communities.”

  6. What are the numbers?

  7. Reported U.S. AIDS Cases by Race and Sex Through 2005

  8. Estimated numbers of cases and rates (per 100,000 population) of AIDS by race and sex, 2005

  9. Persons living with an AIDS diagnosis, by race/ethnicity and selected characteristics, year-end 2009—United States (per 100,000 population)

  10. HIV Surveillance Summary • AIANs have a 60% higher rate of AIDS as compared to the white population • While overall estimated number of AIDS diagnoses decreased between 2006 and 2009, it remained stable in AIANs • In same time period, HIV diagnoses increased despite an overall population decrease and this may be a better indicator of HIV/AIDS risk in AIAN communities • AIAN have a shorter time to AIDS diagnosis and survival time after diagnosis • Among those in 1996-2005: • 47.2% AIAN received an AIDS diagnosis within 3 years of initial HIV diagnosis • 42.6% Whites • 46.1% Blacks • 48.8% Latinos • 50.4% API • 2003-2006 AIAN were less likely to survive 12, 24, or 36 months after HIV diagnosis compared with any other single race or ethnic group!!! • Greater estimated percentage of AIAN infected with HIV were undiagnosed by end of 2008, compared to Blacks, Latinos, and Whites • May reflect lower testing access, uptake, or coverage for at risk AIAN • Approximately 73% of diagnoses of HIV infections among AIAN MSM!! * Source: CDC, Improving HIV Surveillance Among American Indians And Alaska Natives in the United States, July 2012

  11. HIV Exposure, 2009 AIAN Males, 2009

  12. HIV/AIDS and AIAN men • Reported cumulative AIDS cases through 2009 indicate that AIAN men ranked first in contracting HIV through MSM and IDU compared to any other ethnic group.* • AI/AN: 18% (MSM + IDU) • Multiracial: 12% • White: 9% • Black men 8% • Latino: 7% • Native HI/OPI: 7% Source: Reported CDC HIV Surveillance Report 2010, Vol. 22, Table 18a

  13. HIV/AIDS and AIAN Women • The percentage of female HIV/AIDS diagnoses among AIANs rose from 19% in 2000 to 29% in 2008 • Reported cumulative AIDS cases through 2005 indicate that AIAN women ranked first in contracting HIV through IDU compared to any other ethnic group.* • AIAN women 42% • White women 40% • Latina women 36% • Black women 35% • API women 12% Source: Reported AIDS Cases for female adults and adolescents, by transmission category and race/ethnicity, 2005 and cumulative- US and dependent areas, HIV/AIDS Surveillance, revised June, 2007, Vol.17, Table 21

  14. Our Findings • The Honor Project:Two-Spirit Health Study6-year multi-site national study [5RO1 MH65871] 2002-2008

  15. “Extreme” Childhood Trauma & General Trauma Men Women Total* Sexual Abuse 31% 52% 60% Emotional Abuse 31% 52% 69% Physical Abuse 23% 35% 53% Emotional Neglect 19% 31% 61% Physical Neglect 10% 25% 58% * Represents general trauma exposure, not extreme

  16. Risk Indicators • Hep C • 26% Trans • 28% Women • 29% Men • HIV • 31% Trans • 31% MSM • 15% WSW/M • 8% WSW • Any IDU • 58% Trans • 39% Women • 28% Men • Always protected sex • 63% Trans • 43% Women • 42% Men • Ever traded sex • 17% Trans • 36% Women • 29% Men

  17. Effectiveness of HIV case surveillance depends on factors: HIV test-seeking, testing practices of providers; access to testing; case reporting to state systems by providers; correct identification of AIAN race, appropriate data analysis methods (no more other!), and dissemination of information for uptake by AIAN communities • E.g., Risk factor information was missing for 26% of AIAN diagnosed with HIV in 2010 • These systems are failing at the moment….CAN’T SEE RED! • In 2002, OMB recommended that AIAN NOT Be combined with other groups due to the data offering “minimal useful information” for public health programs—ignoring the needs of AIAN CBOS and tribal health programs • There are concerns by AIAN communities that diagnoses of HIV among AIANs are not being reported as required by state laws—underreporting due to mistrust, state-tribal jurisdictional boundaries and stigma * Source: CDC, Improving HIV Surveillance Among American Indians And Alaska Natives in the United States, July 2012

  18. Underreporting and racial misclassification • A review of 6,500 CBO records serving PLWAs found that 70% of AIAN clients were incorrectly classified as other races • 4-55% of AIAN with reported diagnoses across jurisdictions had been misidentified as not being AIAN in HIV surveillance case records • Racial misclassifcation-56% of AIANs with AIDS diagnoses were classified as a different race in Los Angeles (Hu et al., 2003) • Surveillance methods of reporting by race and ethnicity HIGHLY problematic! • Individuals of any race with Hispanic are put into Hispanic/Latino • Individuals who report more than one race are put in “multiple race” category– thereby diminishing or erasing AIAN and have greatest effect on AIAN reporting than for any other group • 44% of AIAN self-identified as having more than one race in census 2010 Source: CDC, Improving HIV Surveillance Among American Indians And Alaska Natives in the United States, July 2012 Source: CDC, Improving HIV Surveillance Among American Indians And Alaska Natives in the United States, July 2012

  19. Lack of a national standard for reporting AI/AN by state and local health departments • Absence of data. • A review of national studies of seroprevalence, HIV counseling and testing data, and national measures of risk behavior revealed that until 2002, NONE categorized by AI/AN • Lack of comprehensive IHS service tracking • Over-reliance on total numbers of HIV/AIDS cases rather than on proportion of cases in relation to AI/ANs and tribes

  20. HIV surveillance data in several states, including those with the largest populations was not collected by CDC prior to 2004 because these states resisted the adoption of name-based HIV registries to protect funding and civil liberties • California, NY and Washington for example only recently began to submit name-based HIV surveillance data within the past few years • Other reasons for undercount/likely underestimates • Many AIAN do not have health insurance • Many live in rural areas where HIV testing and confidentiality difficult • Data on STI suggest likely undercount-AIAN women have 2nd highest chlamydia and gonorrhea rates in the US (4.5 times higher than White women)—placing at high risk for exposure to HIV

  21. Seeing Red Making Visible Our Needs and Respecting Our Health and Trust Responsibilities

  22. Recommendations • Policy/Surveillance—See RED and [Red]ress • Systems need to better monitor American Indian and Alaska Native health and HIV • National HIV studies need to include AIANs--Native women and two-spirit men • Include AIAN CBOs and urban AIAN HIV and MSM programs in tribal, federal, and state consultation process • No more OTHER or thresholds– does not respect sovereignty or trust responsibilities • Consultation regarding ACA, Indian Health Care Act amendments

  23. Recommendations • Research (Get Red) • Better surveillance systems and data analyses • Longitudinal studies to discern pathways • Focus specifically on Native MSM and women & pathways and mechanisms related to triangle of risk, indigenist-stress coping • Address structural and communal violence • Address IDU in Indian Country • Focus on resiliency –who is doing well • Treatment & Intervention (Think and Be Red) • Need intervention research to identify efficacious interventions that incorporate cultural and traditional healing approaches—Work with Native CBOs doing this already! • Network/collective interventions to address underlying trauma • Positive media campaigns to destigmatize • Integrated primary care approaches • EBP and PBE approaches that are culturally driven • Two spirit involvement and support in ITU program development to address HIV needs and prevention

  24. Time to Heal, Time to Take Action • Communal approaches to prevention and healing • Community memorialization • Murals • Shawl projects

  25. Acknowledgements • Pamela Jumper Thurman • Harlan Pruden • Sharon Day • Melvin Harrison • Irene Vernon • For their sharing information, slides, and support in preparing this presentation

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