Seeing Red:Indigenous People and HIV in the United States of AmericaStrategic directions to overcome the impact of HIV on indigenous communities

Karina L. Walters, MSW, PhD (USA)(Choctaw Nation of Oklahoma)

Indigenous Wellness Research Institute (IWRI) Indigenous HIV/AIDS Research Training (IHART) University of Washington

iwri.org Panel Presentation at the XIX International AIDS Conference, July 24, 2012, Washington DC, USA

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

AI/AN Demographics

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

e Good……..For the first time, we have a National Strategy addressing HIV and AIDS!

• Released in July of 2010• The first comprehensive

and measureable goals • Calls for a more

coordinated response• Refocuses existing efforts

“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.” 

More Good…

What are the numbers?

REPORTED U.S. AIDS CASES BY RACE AND SEX THROUGH 2005

Click icon to add chart

ESTIMATED NUMBERS OF CASES AND RATES (PER 100,000 POPULATION) OF AIDS BY RACE AND SEX, 2005

Click icon to add chart

PERSONS L IV ING WITH AN A IDS D IAGNOSIS , BY RACE /ETHNIC ITY AND SELECTED CHARACTERIST IC S , YEAR-END 2009—UNITED STATES

( P E R 1 0 0 , 0 0 0 P O P U L AT I O N )

Click icon to add chart

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

37.00%IDU

60.50%Het

2.500% IDUHet

AIAN Females, 2009

HIV EXPOSURE, 2009

AIAN Males, 2009

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%

HIV/AIDS AND AIAN MEN

Source: Reported CDC HIV Surveillance Report 2010, Vol. 22, Table 18a

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%

HIV/AIDS AND AIAN WOMEN

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

Our Findings The Honor Project:

Two-Spirit Health Study6-year multi-site national study [5RO1 MH65871] 2002-2008

“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

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

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

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

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

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

Seeing RedMaking Visible Our Needs and Respecting Our Health and Trust Responsibilities

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

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

Recommendations

Communal approaches to prevention and healing Community memorializationMuralsShawl projects

Time to Heal, Time to Take Action

Acknowledgements Pamela Jumper Thurman Harlan Pruden Sharon Day Melvin Harrison Irene Vernon

For their sharing information, slides, and support in preparing this presentation