Meera Vashisht: Ending HIV/AIDS within Native American Communities

Broken Promises and the Indian Health Service

 

Battling HIV and AIDS, a highly stigmatized disease, is an issue the Indian Health Service has been dealing with for decades. With 574 federally recognized American Indian and Alaska Native tribes, creating culturally appropriate prevention for each tribal identity presents a host of problems (14). Every tribal community has a distinct and unique culture, belief system, and set of practices. With this required nuance among tribes, prominent issues cannot be addressed in a uniform way - issues like preventing the spread of HIV/AIDS. Data from the National Native American AIDS Prevention Center shows that Native Americans comprise 6% of all new HIV infections while representing less than 1% of the US population (1). Moreover, our current data on Native Americans and AIDS offers misleading information, often making it appear as if HIV infections within Native communities has become so low that it has declined. This is a false construct. Compounding issues with the current data, many living within Native communities have been racially misidentified, leading to undercounting of indigenous populations within HIV surveillance systems, inevitably contributing to underfunding to the Indian Health Service (3).

In discussing HIV/AIDS and Native American communities, this study will not address the false pretense and notion that gay, lesbian, and bisexual Natives are stigmatized within Native communities. Traditionally, Native cultures have openly accepted diverse genders and expressions of sexuality. It has only been within, and since, white assimilation that attempts to suppress and promote ignorance about one’s sexual preferences and orientation has been exhibited within Native American communities. The current narrative of the Indian Health Service and other Native programs set up by the US government agencies claims that LGBTQ+ Natives are facing a culturally based (sic) stigma, limiting the educational opportunities for the prevention of AIDS, as well as hindering HIV testing on reservations and within tribal communities. If this has happened, I have found no direct sources to indicate this. I feel this has been a direct result of forced assimilation, where the US Government is thus, once again, completely responsible.

Before this analysis begins, it is important to explain what the Indian Health Service is, and how this entity is failing the Native populations it services. The Indian Health Service (IHS) is a government program providing health care to the 2.2 million members of the United States’ tribal communities (19). IHS has multiple issues surrounding a lack of funding and supplies and staffing issues, including an extreme shortage of doctors and nurses, limited hospital beds, and often inadequate, aging facilities. The systematic weaknesses within this health system often forces tribal officials to take matters into their own hands, spending millions of tribal monies to bolster response. In states with Indian Health Service hospitals, the death rates for preventable diseases, like alcohol-related illnesses, diabetes and liver disease, are three to five times higher for Native Americans, who largely rely on Indian Health Service facilities and hospitals, than for other races combined. Many of the service’s hospitals lack the medical expertise and equipment to treat patients with severe illness (18). In 2017, the Indian Health Service spent $3,332 per patient, according to a report by the National Congress of American Indians. By comparison, Medicare spent $12,829 and Medicaid spent $7,789 per patient that same year (17).

There are currently 574 sovereign tribal nations, also called tribes, nations, pueblos, bands, communities, and villages. Please note the word “sovereign” herewhich denotes the authority to self-govern. Hundreds of historical treaties, as well as supreme court rulings, have upheld that all tribal nations maintain their inherent powers as self-governing bodies. Historical treaties, executive orders, and laws create a fundamental contract between these tribal entities and the US federal government. Each tribal community has a formal nation-like relationship with the United States Government where they arelegally defined as “federally recognized”. 229 of these tribes are located within the state of Alaska, with the remaining located across 35 other states. A tribal government operates in a unique and complex way within the US government body; this is due  to the fact that the US Constitution recognizes each tribal entity as a sovereign government in itself. In theory, tribal governments exercise jurisdiction over a size of the US that would make it the fourth largest state in the nation if they were all combined. It should be further pointed out that over the last two and a half centuries, tribal nations have ceded large areas of land to the US government in return for the guarantee that they remain self-governing. This idea is formally known as the “Federal Trust Responsibility" in indigenous legal terms. The treaties and laws that were created to form the Federal Trust Responsibility ensure tribal nations that they be provided federal assistance for their respective communities in order to remain vibrant and thriving. An interesting, and sometimes problematic result of the Federal Trust Responsibility is that while each tribal government maintains the ability to determine their own laws and courts, this becomes problematic when determining US governmental intervention concerning health care issues.

Inadequate HIV/AIDS surveillance, political invisibility of Native Americans within the AIDS community, and the complexities of jurisdictional issues, are all placing Native Americans at a disadvantage with federal funding. In truth, HIV/AIDS has become an increasing threat to Native American health. While the exact level of HIV/AIDS infection within Indian Country is unknown, what is clear is that Native Americans with HIV are disproportionate compared to other US populations. Some estimates have indicated that rates among Natives have increased by almost 11%, with Native women having increases as high as 50% (11). HIV infection is now one of the leading causes of death among American Indians and Alaska Natives within the 10-14 and 25-44 age groups (7). Greater efforts are needed to increase knowledge about HIV among Native populations, and this is critical for the prevention of further spreading of the virus and its future eradication.

There are several issues that need to be addressed before HIV/AIDS can be eradicated within Native communities. Compared to other racial groups, Natives are estimated to use higher rates and quantities of alcohol and drugs at younger ages,exacerbating the ongoing issues with HIV/AIDS (2). Disparities concerning Native American health have existed since European contact centuries ago, and data is still extremely limited (4). There is also a substantial lack of scholarship on these issues, and what is in existence is often dated or characterized by very isolated groups and small regional samples (13). For example, no known studies are available that discuss the many challenges faced by children and younger indigenous populations living in various social and demographic situations, like the extended family, a common construct within indigenous communities. This includes grandparents rearing grandchildren, as well as child-rearing beliefs that greatly differ from those of other US populations (15). These all play important roles in intervention concerning younger Native populations. 

Moreover, there are three main obstacles to tribal self-governance that have been identified in solving the HIV/AIDS problem on tribal lands: 

  1. The outmoded bureaucratic processes

  2. The lack of federal agency coordination

  3. Various rules, regulations, and laws that prevent tribal governments from equitable access to federal programs equal to those of state and local governments

While self-government is necessary for tribal communities to protect each Native American culture and identity, it presents a host of legal and bureaucratic issues.

Another point of concern is that responses by tribal governments have not been adequate to meet the HIV/AIDS crisis, partly because of historic under-funding from government agencies to the Indian Health Service, as well as the lack of adequate tribal statistics depicting the scale of the problem (16). While numbers are undoubtedly rising, problems within Native American HIV surveillance systems do not predict the full extent of the problem (6). Worsening the situation is that the Indian Health Service’s AIDS program plays too insignificant of a role. There needs to be better funding with more HIV/AIDS projects in place to address the issue. For example, California – a state containing the largest Native American population in the country, with nearly 100 reservations – does not contain a single IHS hospital, putting California Natives at huge risk (10). In California, inpatient care is not even available through the Indian Health Service. Patients who need to be admitted to a hospital, or need to be seen by a specialist, must be referred to providers in the community. As a result of the shortage of funding, Native American patients must then seek care outside the Indian Health Service system and apply for health insurance through Medi-Cal, California’s insurance program for poor and low-income residents, or through the Affordable Care Act (9). In other areas of the US, similar problems exist. Inadequate funding has forced tribal communities to borrow, ask for donations, or apply for grants to subsidize and fulfill the Indian Health Service’s responsibilities. While the Indian Health Service is obligated to provide health care to tribes, the U.S. Government has not provided adequate funding to build more clinics. Under the 1991 Joint Venture Construction program, if a tribe or a consortium of tribes finds funding to build a clinic, Indian Health Service will cover the cost to staff it for 20 years. But since the Joint Venture Construction Program’s inception, the agency has only funded about 35 projects, according to the Indian Health Service (10).

There is a complete lack of coordination among federal, state, and tribal governments which greatly hinders efforts to deal with the HIV/AIDS epidemic in Native American communities. At the Navajo Nation, for example, which includes parts of Arizona, New Mexico and Utah, many Natives are living in homes without electricity, and a third of the population does not have running water. While the Navajo Nation is only 1 of 12 IHS regions, the region runs 14 health care facilities on a single reservation, and there are only 222 hospital beds available to the reservation’s more than 170,000 residents. The ratio of hospital beds to the Navajo population is about a third of that for the general population of the US. Plus, Moreover, the Navajo Nation serves another 74,000 Native Americans who live off the reservation. Obviously, such settings make it difficult to follow guidance from the Centers for Disease Control and Prevention concerning HIV/AIDS. In more sparsely populated areas of reservations, for example, people often travel for miles to get care. While demographic issues factor into finding adequate care solutions, those defending the Indian Health Service's claim that it has always been underfunded state that Congress, presidential administrations, and the agency’s own management are the ones to really blame (10).

Worse still, IHS Service Units and tribal clinics still do not report AIDS case data to state health departments, leading to further inadequacies in surveillance of the virus and a lack of statistics on the problem. Also, the only other federal initiative which deals with HIV/AIDS and American Indian populations is the Ryan White Care Act, a law passed in 1990 to provide federal funding and programs to address the AIDS crisis in America. Since its enactment 30 years ago, the program has been the primary source of funding for Native American-specific care programs concerning HIV/AIDS. Moreover, the only area of the act that even mentions Native Americans is the Special Projects of National Significance Program, a very small and limited program that is defined as “temporary” and “research driven" in the literature (8).

Other issues are the availability of drugs to treat the virus within Native communities. While Congress has recognized the burden of costs on states by passing the AIDS Drug Assistance Program to assist state health departments with underwriting the cost of drugs, Congress has not considered these costs on American Indian health care systems at all (!) and has excluded tribes, reservations, and Indian Nations completely. Also, the IHS does not ensure the availability of drugs used to treat AIDS patients, leaving this issue to local IHS facilities, which are already dealing with unrealistic pharmaceutical budgets. 

IHS needs to be more involved than it has been with its own resources to treat Natives with HIV/AIDS. Right now, the AIDS Drug Assistance Program and the IHS are not assuming enough responsibility for the supplying of needed drugs and resources to Natives who are living with this devastating disease. 

Meera Vashisht is a Sophomore at Yale University in Ezra Stiles College

 

Citations

1. Alvy, L. M., Mckirnan, D., Bois, S. N., Jones, K., Ritchie, N., & Fingerhut, D. (2011). Health Care Disparities and Behavioral Health Among Men Who Have Sex with Men. Journal of Gay & Lesbian Social Services, 23(4), 507-522. doi:10.1080/10538720.2011.611114.

2. Beals, J., Novins, D. K., Spicer, P., Whitesell, N. R., Mitchell, C. M., Manson, S. M., & American Indian Service Utilization, Psychiatric Epidemiology, Risk, and Protective Factors Project Team. (2006). Help seeking for substance use problems in two American Indian reservation populations. Psychiatric Services, 57(4), 512–520. https://doi.org/10.1176/appi.ps.57.4.512.

3. Bertolli, J., Lee, L. M., Sullivan, P. S., & AI/AN Race /Ethnicity Data Validation Workgroup (2007). Racial misidentification of American Indians/Alaska Natives in the HIV/AIDS Reporting Systems of five states and one urban health jurisdiction, U.S., 1984-2002. Public health reports (Washington, D.C. : 1974), 122(3), 382–392. https://doi.org/10.1177/003335490712200312.

4. Bird M. E. (2002). Health and indigenous people: recommendations for the next generation. American journal of public health, 92(9), 1391–1392. https://doi.org/10.2105/ajph.92.9.1391.

5. Brave Heart, M. Y., & DeBruyn, L. M. (1998). The American Indian Holocaust: healing historical unresolved grief. American Indian and Alaska native mental health research : journal of the National Center, 8(2), 56–78. California Area Office. (n.d.). Retrieved December 10, 2021, from https://www.ihs.gov/california/index.cfm/about-us/.

6. Diamond, C., Davidson, A., Sorvillo, F., & Buskin, S. (2001). HIV-infected American Indians/Alaska natives in the Western United States. Ethnicity & disease, 11(4), 633–644.

7. Galea, S., Tracy, M., Hoggatt, K. J., Dimaggio, C., & Karpati, A. (2011). Estimated deaths attributable to social factors in the United States. American journal of public health, 101(8), 1456–1465. https://doi.org/10.2105/AJPH.2010.300086.

8. Galletly, C. L., Difranceisco, W., & Pinkerton, S. D. (2009). HIV-positive persons' awareness and understanding of their state's criminal HIV disclosure law. AIDS and behavior, 13(6), 1262–1269. https://doi.org/10.1007/s10461-008-9477-y.

9. Galletly, C. L., & Pinkerton, S. D. (2006). Conflicting messages: how criminal HIV disclosure laws undermine public health efforts to control the spread of HIV. AIDS and behavior, 10(5), 451–461. https://doi.org/10.1007/s10461-006-9117-3.

10. Indian Health Service (IHS). (n.d.). Retrieved December 11, 2021, from https://www.ihs.gov/navajo/.

11. Justman, J., Befus, M., Hughes, J., Wang, J., Golin, C. E., Adimora, A. A., Kuo, I., Haley, D. F., Del Rio, C., El-Sadr, W. M., Rompalo, A., Mannheimer, S., Soto-Torres, L., & Hodder, S. (2015). Sexual Behaviors of US Women at Risk of HIV Acquisition: A Longitudinal Analysis of Findings from HPTN 064. AIDS and behavior, 19(7), 1327–1337. https://doi.org/10.1007/s10461-014-0992-8.

12. Joint Venture FAQ: Programs. (n.d.). Retrieved from https://www.ihs.gov/dfpc/programs/jvcpfaq/.

13. Marks, A. K., & Coll, C. G. (2007). Psychological and demographic correlates of early academic skill development among American Indian and Alaska Native youth: a growth modeling study. Developmental psychology, 43(3), 663–674. https://doi.org/10.1037/0012-1649.43.3.663.

14. Rodriguez-Lonebear, Desi PhD; Barceló, Nicolás E. MD; Akee, Randall PhD; Carroll, Stephanie Russo DrPH, MPH American Indian Reservations and COVID-19: Correlates of Early Infection Rates in the Pandemic, Journal of Public Health Management and Practice: July/August 2020 - Volume 26 - Issue 4 - p 371-377 doi: 10.1097/PHH.0000000000001206.

15. Stiffman AR, Striley C, Brown E, et al. American Indian Youth: who Southwestern urban and reservation youth turn to for help with mental health or addictions. J Child Fam Studies. 2003;12:319–333.

16. Thorington, N. B. (1999). Civil and criminal jurisdiction over matters arising in Indian country: A roadmap for improving interaction among tribal, state and federal governments (Vol. 31). Petaluma, CA: National Indian Justice Center.

17. Tribal Communities Lacking Quality Care Seek Improvements: Consumers for Quality Care. (2019, October 30). Retrieved December 12, 2021, from https://consumers4qualitycare.org/tribal-communities-lacking-quality-care-seek-improvements/.

18. US Commission on Civil Rights. A Quiet Crisis: Federal Funding and Unmet Needs in Indian Country. 2004. [Accessed November 1, 2004]. Available at: http://www.usccr.gov/pubs/na0703/na0204.pdf.

19. Walker, M. (2020, September 29). Pandemic Highlights Deep-Rooted Problems in Indian Health Service. Retrieved from https://www.nytimes.com/2020/09/29/us/politics/coronavirus-indian-health-service.html.

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