Dana Vigue

7.27 Principles of Human Disease

25 April 2016
Wolakota Womens Clinic
A Biomedical and Sociocultural Approach to Addressing HIV Health Disparities among
Standing Rock Sioux Women
Introduction
Current statistics indicate that Native American communities bear an HIV burden
proportional to their population in the U.S., but these statistics are likely misrepresentative.
Many multiple race individuals who are also Native American may not be categorized as
Native American upon the collection of HIV data, resulting in an underestimation of Native
American HIV rates (Walters et al. 2011). Furthermore, the U.S. census has historically
undercounted Native Americans, especially Native Americans living on reservations; for
example, the 1990 U.S. census underrepresented the Native American population in
Mendocino County, California by 50 to 80 percent (Fukari et al. 2008). Even so, the overall
estimated number and rate of HIV/AIDS diagnoses remained stable in Native American
communities between 2006 and 2009, despite an overall population decrease. In contrast,
the U.S. as a whole saw a decrease in both rate and number of HIV/AIDS diagnoses during
this same time period (Walters et al. 2011). Rates of HIV infection have increased by 900%
among Native Americans between 1990 and 2001, a more rapid increase than any other
ethnic group in the U.S. (Dennis, 2009). Native American women are at a disproportional
risk for HIV; HIV/AIDS diagnoses among Native American women rose from 19% in
2000 to 29% in 2008 (Walters et al. 2011).
Even though Native American women are high-risk for HIV, HIV is significantly
understudied in Native American women. Many social, political, economic, and
biomedical factors contribute to this health disparity, including sexual violence, history of
substance abuse, syndemics, and the effects of colonialism. Recent movements have
developed to address the biomedical, political, and economic factors contributing to
increased prevalence of HIV among Native American women. This project seeks to apply
the lessons learned from biomedical research as well as recent movements to address HIV
in Native American communities which center on cultural traditions and Native womens

knowledge, including the Community-Based Participatory Research (CBPR), the

Community Readiness Model (CRM), Enculturation, and the Indigenist model.
Human Immunodeficiency Virus: Biological Underpinnings
Human Immunodeficiency Virus, HIV, is a lentivirus responsible for Acquired
Immunodeficiency Syndrome, AIDS. HIV infection is mediated by the recognition of cellsurface CD4 and the chemokine coreceptors, CCR5 or CXCR4 on activated CD4 T
lymphocytes, resting CD4 T cells, monocytes, macrophages, and dendritic cells. Though
the immune system is the primary target of HIV, CD4-independent HIV infection has also
been detected in astrocytes and renal epithelial cells, leading to neurocognitive disorder
and nephropathy (Maartens et al. 2014).
HIV is transmitted across mucosal membranes or by direct introduction into the
blood. Transmission of HIV across mucosal membranes is accomplished by one founder
virus and is followed by a rapid increase in HIV replication which induces inflammatory
cytokines and chemokines. Studies have shown that the risk of sexual transmission of HIV
is directly related to the number of copies per mL of plasma HIV RNA, termed the viral
load. HIV epidemics are largely driven during acute HIV infection, which results in very
high plasma viral loads in the first few months following infection (Maartens et al. 2014).
Other factors associated with increased risk of sexual transmission of HIV include both
biological and sociological factors.
With consistent antiretroviral (ARV) therapy, HIV is a manageable chronic disease.
Current ARV therapies are more effective with fewer side-effects, and require fewer pills
and less frequent doses than did the pioneering protease. Currently, ARV therapy is a
combination therapy of two nucleoside reverse transcriptase inhibitors and a nonnucleoside reverse transcriptase inhibitor, protease inhibitor, or integrase inhibitor
(Maartens et al. 2014). Combinations of drugs aim to prevent the evolution of drug
resistance, with drug resistance most often emerging in response to nucleoside reverse
transcriptase inhibitors (Figure 1).

Figure 1: HIV life cycle showing the sites of action of different classes of antiretroviral
drugs adapted from Maartens et al. 2014.
Dr. Bruce Walker, Principal Investigator at the Ragan Institute of MGH, Harvard,
and MIT, leads an international effort to understand the rare instances in which a persons
immune system is able to combat HIV infection without treatment. Dr. Walker is an adjunct
professor at the Nelson R. Mandela School of Medicine at the University of KwaZuluNatal in Durban, where he co-founded the Doris Duke Medical Research Institute and
trains South African scientists in the HIV Pathogenesis Programme. In his laboratory at the
Nelson Mandela School of Medicine, Dr. Walker investigates the evolution of clade C
virus infection under immune selection pressure. By more deeply understanding the
dynamic interactions between HIV and the human immune system, Dr. Walker hopes to
usher in a new era of HIV therapies involving the use of human antibodies that confer
resistance to HIV infection (Bruce Walker, M.D., Personal Communication, 5 April 2016).
Native American Women: A Population at Risk
Native American women in the United States face disproportionately high rates of
HIV (Walters 2011), as well as sexual assault, and rape (Tehee & Esquada 2007) as
compared to white women. Sexual assault and rape are avenues for HIV transmission to
Native American women, with heterosexual contact serving as the primary mode of

exposure for Native women at 67% (Walters et al. 2011). Trauma, substance abuse, and
interpersonal violence correlate with HIV sex risk behaviors such as unprotected sex and
IV drug use (Evans-Campbell et al. 2006). In fact, 32% of Native women contract HIV
through IV drug use (Walters et al. 2011).
Inextricably tied to the prevalence of HIV among Native American women is the
fact that Native women experience the greatest rates of interpersonal violence of any ethnic
group in the US (Tehee & Esquada 2007). Sexual violence against Native American
women occurs on and off tribal land. However, the Native communities on tribal land are
ill-equipped to respond to a deficit of clinics on tribal land and the lack of tribal jurisdiction
over sexual assault and rape crimes on tribal land exacerbate the problem (U.S.
Commission on Civil Rights 2004). The rate of violent victimization of Native people in
suburban areas is 2.8 times higher than that of the average for all races in suburban areas;
2.6 times higher for Natives than for all races in rural areas; and 2.5 times higher for Natives
than for all races in urban areas (Perry, S. W. 2004). Furthermore, 59% of physical and
sexual assaults against Native women occurred at or near a private residence (Bachman et
al. 2008), and 39% of Native women experience intimate partner violence, compared to
27% of white women (NCAI 2013). One particular suburban Native American community,
the Standing Rock Sioux Tribe, has expressed its deep concern regarding sexual assault
and rape on their land and publically vocalized their desire for change (Sullivan 2009).
Sexual assault and rape were virtually nonexistent until the European colonization
of North America in 1492. Ron His Horse Is Thunder of the Standing Rock Sioux Tribe
explains: Rape amongst our people was one of those unheard-of crimes. Not because
people didn't talk about it because at one point in time, it didn't occur (Sullivan 2009).
HIV became an epidemic in the U.S. in 1981, and infection rates among Native American
women have only risen. Rates of HIV infection have increased by 900% among Native
Americans between 1990 and 2001, a more rapid increase than any other ethnic group in
the U.S. (Dennis, 2009). HIV and AIDS diagnoses among Native American women rose
from 19% in 2000 to 29% in 2008 (Walters et al. 2011).
Sexual violence and HIV infection disempower Native American women and
exacerbate negative health outcomes. Native women are 3.4 times more likely to die from
AIDS than white women (Walters et al. 2011). HIV rates among third-trimester Native

women are 4 to 8 times higher than rates among childbearing women of all other races
(Walters et al. 2002). Native American women suffer poverty, food insecurity, and
unemployment rates higher than the national average, and have poor access to medical
care. These factors contribute to worse HIV suppression, lower CDC4 count, and greater
morbidity and mortality due to HIV/AIDS among Native American women (Figure 2).

Figure 2: Food insecurity and HIV/AIDS morbidity and mortality. ART,

antiretroviral therapy, adapted from Weiser et al. 2011.
Native American communities are traditionally matrilocal and matrilineal, and
women possessed great political, social, economic, and spiritual power. Disempowering
Native American women is a colonizing act because Native womens power, wisdom, and
leadership are integral to Native traditional culture (Smith 2005). Colonization enforces
learned helplessness which discourages Native American women from practicing HIV
preventative habits or seeking medical care in response to sexual violence or HIV exposure,
promotes the naturalization of sexual violence against Native American women as Indian
Love. Indian Love refers to interpersonal violence against Native Americans as an
inherent element of Native culture (Walters et al. 2011). Negative health outcomes
contribute to the increasing HIV infection and sexual violence rates that Native American
women face, forming a positive feedback loop. These factors include syndemics of HIV
with other diseases such as TB and STDs, alcohol and drug dependence, and contributes
to poverty and unemployment due to ill mental and physical health (Singer et al. 2003,
Figure 3).

Figure 3: The Indigenist model of trauma, coping, and health outcomes for Native
American women, adapted from Walters & Simoni 2002.
Currently, Juskwa Burnett runs an enculturation-based therapy group for victims of
sexual assault in northern Oklahoma, just outside Otoe-Missouria tribal land. Her sessions
involve traditional healing practices such as sweat lodges and other healing ceremonies
(Sullivan 2009). Her charitable work is motivated by cultural traditions and Native
womens knowledge and the enculturation model, and have shown promise in directly
addressing trauma that is linked to heightened HIV risk (Zimmerman et al. 1996).
Additionally, Vernon et al. (2016) propose that domestic violence response programs
incorporate womens spirituality and culture and allow women to reclaim their self and
strength. Elders, healers, teachers, and counselors should be involved in the healing process
to promote health outcomes such as reduced HIV infection rates.
Plan: Wolakota Womens Clinic
A solution aimed at addressing HIV among Standing Rock Sioux women lies at the
intersection of biomedical and sociocultural therapeutic practices. Georgia Little Shield is
the director of Pretty Bird Woman House, a womens shelter on the reservation that
provides refuge to battered women and their children when home is not safe. In
collaboration with The Pretty Bird Woman House and the Standing Rock Indian Health
Service (IHS) Hospital, the Wolakota Womens Clinic will be created as a medical center
for Native American women who have survived sexual violence and are at high risk for
HIV. The Wolakota Womens Clinic will provide resources and support to Standing Rock
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Sioux women who have survived sexual violence, including emergency and nonemergency medical care with an emphasis on HIV prevention, testing, and treatment,
mental health care, and counseling.
The Wolakota Womens Clinic will be framed around the Indigenist model which
acknowledges fourth world status and advocates for Native empowerment and sovereignty
(Walters et al. 2002). A fourth world nation is one that exists within a majority colonizing
nation in power and is subjugated by that nation. This framework provides the clinic with
a compassionate perspective and promotes a holistic understanding of sexual violence and
HIV in terms of the history of violence against Native American women in the U.S.
Therapy will adopt the enculturation approach, whereby individuals learn about and
identify with their minority culture as a part of the healing program. Traditional healing
practices will be included with the physical and mental health care services offered by the
center. These therapeutic approaches have been shown to significantly improve health
outcomes among Native Americans (Walters & Simoni 2002). Counseling will include
womens support groups which emphasize recovery from sexual violence drawing from
traditional cultural practices, resources to escape abusive relationships and violent
situations, management of HIV, HIV prevention, professional development, and careerbuilding.
The Wolakota Womens Clinic will also provide culture-based case management,
whereby case workers who aid survivors of sexual violence are specially trained in cultural
literacy and address cases in a culturally respectful manner. Options for prosecution
consistent with Standing Rock Sioux Tribal Court preferences will be presented alongside
prosecution options offered by the states of North and South Dakota.
The Wolakota Womens Clinic will provide free HIV testing, facilitate access to
medical care for both sexual abuse and HIV infection, and facilitate access to food
assistance programs. Patients who are evaluated and deemed at-risk for HIV will be eligible
for HIV preexposure prophylaxis (PrEP) medications, at a subsidized cost covering up to
100 percent of the cost of the prescription depending on the patients financial situation.
Clinical trials have shown that PrEP, especially accompanied by frequent screening and
prompt treatment in response to HIV exposure has been shown to significantly reduce HIV
burden (Bernard et al. 2016). Patients will receive free or subsidized HIV testing, and HIV

positive patients will be prescribed combination ARV therapy consisting on two nucleoside
reverse transcriptase inhibitors, emtricitabine or lamivudine with either abacavir, tenofovir,
or zidovudine, and a non-nucleoside reverse transcriptase inhibitor, protease inhibitor, or
integrase inhibitor.
The timeline for this project includes multiple stages. First, connections within the
Standing Rock Sioux Tribe will be developed over the next six months. Most importantly,
collaboration efforts will be initiated with Georgia Little Shield, the director of Pretty Bird
Woman House, and the administrative board of the Standing Rock Indian Health Services
Clinic. Additionally, relationships will be established with William P. Zuger, Acting Chief
Judge of Standing Rock Sioux Tribal Court, Standing Rock Day Treatment Program,
Standing Rock Tribal Health Administration, and Standing Rock Women Infants &
Children Program (WIC) as part of a community needs assessment. Interviews will be
conducted with Standing Rock Sioux women in the community who have survived sexual
assault or rape and their loved ones. Over the next year, a pilot location for the Wolakota
Womens Clinic will be established. Depending on the local infrastructure, the Wolakota
Womens Clinic may begin within the Pretty Bird Woman House, the Indian Health
Services Clinic, or in a separate location. After a year of service and collaboration, the
mature clinic may establish itself in a different location or open an additional treatment
center.
This solution addresses many of the structural factors that are linked to HIV
prevalence among Native American women including rape and sexual assault, trauma, and
HIV sex risk behaviors, lack of access to medical care, food insecurity, and colonialism.
Addressing structural violence against Native American women more directly aims to
eliminate some of the root causes of HIV infection and empowers women in many other
areas of health and wellbeing. Empowering Native American women promotes the
preservation of Native American traditional values which emphasize womens power,
wisdom, and leadership in their communities. The preservation of Native American
traditional values strengthens entire Native American communities. Strong Native
American communities can resist colonialization and assimilation. This is important to
keep Native American traditions and cultures alive, which correlates with positive health
outcomes among Native Americans (Walters et al. 2002).

Funding: Collaboration with the NCAI

To provide HIV, counseling, and empowerment services at little to no charge to
Standing Rock Sioux women, the Wolakota Womens Clinic will seek funding from the
National Congress of American Indians (NCAI). The NCAI promotes three major pillars
as part of their vision: To secure our traditional laws, cultures, and ways of life for our
descendants, promote a common understanding of the rightful place of tribes in the family
of American governments, and improve the quality of life for Native communities and
peoples. This project aims to preserve Native American culture through the empowerment
and health of Native American women, and further involves Native American communities
in the national discussion about sexual violence and HIV. More broadly, the vision of the
Wolakota Womens Clinic is to combat Native American health disparities by addressing
both an epidemic of HIV and an epidemic of sexual violence.
NCAIs political awareness and activism work aligns well with the inherently
political nature of addressing sexual violence and tribal jurisdiction during this
intervention. Furthermore, the NCAI as a political organization may facilitate
conversations with the Indian Health Service and the Bureau of Indian Affairs, two
additional governmental organizations capable of providing support to the Wolakota
Womens Clinic. Association of the Wolakota Womens Clinic with the NCAI will help
advance not only the projects vision but also the NCAIs goals of responding to
interpersonal violence and HIV within Native American communities.
Conclusions
Wolakota is the Sioux word for peace or, more broadly, the wellness of our people
and community, harmony, unity, and peace of mind (Selmeier 2011). The Wolakota
Womens Clinic endeavors to promote wolakota in the Standing Rock Sioux tribe,
specifically among women who suffer disproportionate rates of interpersonal violence and
HIV infection. By approaching medicine from an intersectional perspective with emphasis
on traditional Native American values, the Wolakota Womens Clinic aims to combat
epistemic racism. Indigenous physician Dr. DeCoteau says of epistemic racism:
"It's the form of racism that says one knowledge system is superior to another. So,
when it comes to this notion of evidence or knowledge that's produced by Western science,
to say that our healing methods have to be supported by Western science or Western
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evidence is to say that Western knowledge is superior to Indigenous knowledge and our
knowledge can't be valid or valuable unless there's Western science saying it's valid."
-Dr. Marcia Anderson DeCoteau, interview, 17 April 2016
By promoting access to HIV preventative care and treatment, trauma response,
counseling, and case-management within an Indigenist framework, the Wolakota
Womens Clinic aims to eliminate many health disparities faced by Native American
women.

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