HIV/AIDS in Indian County

Jack C. Jackson, Jr., Director of Governmental Affairs,
National Congress of American Indians

There are many people in Indian Country and within the federal and state bureaucracies who believe that HIV/AIDS is not a pressing problem in the American Indian and Alaska Native (AI/AN) populations. The AI/AN population is relatively small compared to the total U.S. population, and Indian people are often mis-classified as other races. As a result, those infected with HIV/AIDS are often overlooked when the subject of AIDS treatment and prevention is addressed. In fact, HIV infection and AIDS are serious threats to the health and well-being of tribal and urban Indian communities.

The Indian Health Services (IHS) is an essential source of care for many AI/ANs and, for those who live on or near reservations, it is the provider of last resort. Unfortunately, the response of tribal governments to the threat of HIV has been slow, in part due to the historic underfunding of IHS that has made tribal leaders reluctant to devote limited resources to HIV/AIDS efforts. Begun in 1989, the IHS AIDS program has played only a minor role in funding HIV/AIDS projects for Native Americans, and many Native Americans will not use IHS services due to concerns over confidentiality. In addition, inadequate HIV/AIDS surveillance, the political invisibility within the AIDS community, and the complexities of jurisdictional issues often place Native Americans at a disadvantage for funding. Moreover, a lack of coordination among federal, state, and tribal governments greatly hinders efforts to deal with the HIV epidemic in Native American communities.

To AI/AN people, Indian youth represent the hopes and dreams for the future of Indian Country. They represent the perpetuity of sovereign tribal nations. They represent the continuation of Indian traditions and the strength and survival of Indian people. But today, more and more young Indian people are needlessly dying from AIDS and HIV. The IHS Trends Report for 1997 reports that among Indian youth 15 to 24 years of age, deaths due to HIV infection ranked as the eighth leading cause of death. For Indian adults 25 to 44 years of age, deaths due to HIV infection ranked as the seventh leading cause of death.

A look at HIV infection among AI/ANs must be viewed against the backdrop of the entire country and of existing surveillance systems.

HIV data are more relevant, but HIV reporting is not universal and does not reflect the true extent of the problem. It is important to note that the above data do not take into account the serious problem of under- reporting of AI/AN cases.

In addition, reporting of surveillance data from IHS and tribal facilities to states is problematic. A 1998 Study entitled "National Native HIV/AIDS Prevention Needs Assessment" prepared by the Intertribal Council of Arizona, in collaboration with the Northwest Portland Area Indian Health Board and National Native American AIDS Prevention Center, made staggering findings regarding the growing problem of HIV and AIDS in Indian Country, including:

" Most state health department respondents do not actively collect HIV/AIDS prevalence statistics from the IHS

" Most service units indicate they do not share HIV/AIDS statistics with AI/AN governments;

" The most responding tribal health departments indicate they are not reporting HIV/AIDS cases to any of the agencies or organizations (IHS, state, county, or CDC) that collect epidemiologic surveillance information

" Several states reported that the racial/ethnic categories for AI/AN were not listed as options on their reporting forms

" Nearly all IHS Service Unit respondents reported that tribes within their jurisdictions did not report HIV/AIDS data to the Unit office

Those doing the work of HIV prevention for Native American communities have been sounding the alarm for the past couple of years that the disease surveillance system is dysfunctional in tribal communities.

The failure of the surveillance system hobbles tribal governments in their ability to track infectious diseases for their population and is reflected in diminished federal resources that limit HIV/AIDS prevention and care programs in their communities. This is especially true given CDCs most recent decision to apply its prevention resources based upon the number of AIDS cases in a given population. The CDC decision implies that AI/ANs may face an epidemic nearly as great as that found among African-Americans before adequate resources are allocated to prevention.