Report:
STEMMING THE TIDE: REDUCING THE FLOW OF HIV AND OTHER STDS IN THE CHEYENNE RIVER SIOUX TRIBE
A PILOT STUDY
by Sarah M Belanger
Today there are over 500 different American Indian and Alaska Native tribes federally recognized in the United States. Although the ancestors of the present day tribes were the first people to inhabit America, today’s American Indians make up the smallest population subset in the United States, accounting for only one percent of the entire U.S. population.1 In 1492, before Columbus made landfall in America, the Indian population was over five million strong. With the migration of Europeans to the New World came diseases that decimated American Indians. These diseases, predominantly small pox, typhus, and measles, wreaked havoc on the Indians and the population hit a low of 250,000 people in 1900. Since the late 15th century, there an estimated 93 serious epidemics have afflicted American Indians, each causing a substantial loss of the lives of tribal members.2
With the implementation of vaccination programs aimed at the Indian community, the mortality rate decreased substantially and from 1990 to 2007 the population increased 65% bringing the total number of American Indians to 3.3 million people. The 561 tribes are located within 35 states and are serviced by 48 hospitals. The Indian Health Service (IHS) assists the majority of tribal members living on reservations or in rural communities and is currently 55% underfunded for the budget it needs to deliver the same level of healthcare provided to most Americans. The life expectancy of an American Indian and Alaska Native born today is 74.5 years, 2.4 years less than the life expectancy of the total U.S. population. Additionally, the mortality rate of infants is 10 per 1,000 live births, compared to 7 per 1,000 live births for the general U.S. population. For most infectious diseases, the infection and mortality rates of American Indians is much higher than that of the total U.S. population. The most extreme example is tuberculosis. 3 An American Indian is twice as likely to become infected with Tuberculosis and is six times more likely to die from the infection than the general American population.1 Because there is such a high mortality rate within the American Indian and Alaska Native populations, the average age of an American Indian is 28 years old, much less than the 35.3 year median age of the U.S. population.3
There are several factors that contribute to the poor health, high infection rate, and high mortality rate of American Indians. The deficiencies in health care increase the likelihood of an individual being infected by a pathogen and being unable to access treatments that would enable the individual to survive the infection. Also, poor medical care results in deficiencies in preventative medicine as well as low rates of screening a community for an infectious disease, a process that is important to identifying treating diseases.
Although the rate of infection of diseases is still much higher than in the general population, there have been decreases in infection and mortality rates in recent years due to the efforts of individual tribes, the IHS, the Center for Disease Control (CDC), and many other organizations. Despite relative improvements in the overall health landscape of American Indians, other infectious diseases are increasing in rate of infection and pose a real threat of become epidemic in level. The most alarming of these emerging diseases is Human Immunodeficiency Virus (HIV) and the associated Acquired Immune Deficiency Syndrome (AIDS). There are several features of American Indians that make the population particularly vulnerable to the rapid transmission of HIV infection.2
Cultural factors contribute to the difficulty of HIV infection in American Indian communities. In many tribes homophobia is common and the ostracism of infected individuals can occur, leading many susceptible individuals afraid of being ostracized to not get tested for HIV infection. Additionally, denial that one may be at risk of infection and a general mistrust of non-Indian healthcare providers further compounds the issue. There may also be a community-wide denial of HIV as problem given a persistent belief that HIV infection is a "white man’s disease". 2 Other risk factors increasing the likelihood of infection are the prevalence of alcohol abuse which can lead to poor judgment and failure to utilize preventative measures. The high rate of infection with other Sexually Transmitted Diseases (STDs) also increases the chance of infection, given that the virus can enter through open sores caused by other STDs.4
The rate of infection of most STDs is generally higher than the white segment of the American population. The rate of infection of Chlamydia in American Indians is 797.3 cases per 100,000 people, a rate that is five times higher than that of the white population. Gonorrhea infection rates are four times that of whites at 138.3 per 100,000, a rate increase of 22.9%. The infection rate of syphilis 2.4-3.3 individuals per 100,000, an increase in rate of 37.5% 5
Although American Indians and Alaska Natives are the smallest population within the U.S. and comprise less than one percent of all HIV infections, this subset has the third highest rate of infection. The infection rate of HIV is 10.4 per 100,000 people compared to 8.8 per 100,000 people for whites. In fact, the rate of HIV infection for American Indians has been high than the rate for whites since 1995. Since the beginning of the HIV/AIDS epidemic, 3,238 American Indians have been diagnosed and in 2005 2,055 American Indians and Alaskan Natives were living with HIV/AIDS. American Indians infected with HIV will on average have the second shortest life expectancy. A survey in 2005 of individuals that were diagnosed with AIDS between 1997 and 2004 resulted in 66% of Blacks, 67% of American Indians, 74% of Hispanics, 75% of Whites, and 81% of Asian/Pacific Islanders still being alive.5
But why should we be concerned? The number of American Indians infected every year is much smaller than the number of people in the U.S. general population that are infected every year. Why should American Indians get more attention (and funding) than other groups? The reason is that the rate of HIV infection of American Indians is increasing while the rate of infection for the overall U.S. population is decreasing. This increase in transmission rate is alarming. The transmission-rate hypothesis relates the manner and rate of pathogen transmission to how virulent the pathogen will become. Accordingly, increasing the rate of transmission decreases the fitness costs on the pathogen and the pathogen is able to be highly virulent (produce large numbers of progeny in a short period of time) while sustaining transmission of the progeny to other hosts. On the other hand, decreasing the rate of transmission will increase the fitness costs of the pathogen and the pathogen cannot afford to reproduce large numbers of progeny quickly as decreases the likelihood of the pathogen being transmitted. Put simply, decreasing the transmission rate puts evolutionary pressure on the pathogen to decrease in virulence to maintain transmission.6
If the rate of transmission of HIV continues to increase, the HIV pathogen will likely become more virulent and infected individuals will have a shorter lifespan from the time of infection to the time of progression to AIDS and, ultimately, death.6 Given the small population, size, an HIV/AIDS epidemic within the American Indian community could be devastating, not just in terms of loss of life but also in terms of the financial and infrastructural burdens that would occur in trying to deal with such an epidemic. It is for these reasons that many view HIV/AIDS as the "New Smallpox".2
The Cheyenne River Sioux is an American Indian Tribe of 10,454 people. The median age is 23.3 years old.7 The Cheyenne River Sioux Indian Reservation is located in North Central South Dakota and is part of the Great Sioux Reservation which is 2,806,913.95 acres (comparable to the size of Connecticut). The tribe is also known as the Teton Lakotas and consists of four bands: the Mni coujou, the Ita zipcola, the Siha sapa, & the O'o' he numpa.8
The reservation is lead by the Tribal Council, which is comprised of the Tribal Chairman, Tribal Executives, and Tribal Council Representatives from each of the six districts that comprise the reservations. Each district contains several communities that are represented by the district Tribal Council members.8
The Cheyenne River Sioux Tribe Health Department is responsible for administering to the healthcare needs of the reservation. There are four clinics on the reservation located at Swiftbird, Whitehorse, Red Scaffold and Cherry Creek. The health department administers programs regarding Field Health (through the clinics focusing on community health, diabetes, and maternal-child health), Diabetes, Environmental Health, Alcohol/Substance Abuse (Four Bands Healing Center), Behavioral Health, Dental, Community Health Outreach, Health Education, and Breast and Cervical Cancer Early Detection. The health department is also working with the University of New Mexico on researching Fetal Alcohol Syndrome.8
The Cheyenne River Sioux Reservation is an ideal community in which to implement this pilot project. The community is large enough that it should provide a diverse (in terms of risk factors) group of people to work with but is not so large that implementing successful programs would be difficult. Additionally, the reservation has a preexisting infrastructure that will facilitate the successful execution of this project. The leadership, the Tribal Council, will be able to inform their constituents that this is a positive, beneficial program and that it is to the tribe’s advantage to participate. The health department will be able to administer the program through the clinics and the outreach services. Tribe members are more likely to participate and follow the directions of medical personnel that are from their own community rather than outsiders. If this infrastructure did not exist, it could be difficult to convince tribe members that this program is for their benefit and there would be an increased likelihood of lack of participation.
The budget is based on a three year long pilot program at the Cheyenn Indian Reservation. In determining the budget it is assumed that the Cheyenne River Sioux will offer there facilities and staff people as an in kind contribution. 5-in-1 STD Test Kits from First Diagnostics that test for Chlamydia, Gonorrhea, HIV-1 & HIV-2, Hepatitis "C" and Syphilis infections. The kits cost $142.95 each and 6, 400 units will be purchased at a cost of $914,880 (Number is based on the number of individuals that fall within the age of sexual activity7) 9 Treatment for select STDs will be priced as follows:
(Number of units are based on number of community members that are infected with a particular STD based on the rate of infection within the American Indian population.5)
Condoms will also be purchased for distribution and will be purchased from condom depot at a box of 1,000 for $12911 each at 80= $10,320
The 1 doctor’s salary will be $120,000 per year 12 and the 4 nurse practitioner salaries $ 73,000 each per year = $90,00012 The remaining $530,160.67 will be used for cost of materials (brochures and reports), any staff time of Health Department Employees that is not covered and unexpected costs (ie need for more test kits). The total budget per year is 1666,666.67 equaling $5 million.
In order for this plan to be successfully implemented, the collaboration of several organizations will be necessary. Most important is the participation of the Tribal Council and the Health Department of the Cheyenne River Sioux Indian Reservation. The assistance of the National Native American AIDS Prevention Center (NNAAPC) will be essential to effecting training of health care providers and executing community outreach. Additionally, a part of this plan is to recruit one doctor and four nurse practitioners (one for each clinic) that have experience in STDs, particularly HIV. These professionals will be able to bring experience and expertise to the project and will be able to train the staff of the Health Department so that the project can be sustained in the long run.
Because specific information is not available as to the exact number of Cheyenne River Sioux members with STDs an assessment needs to be performed. Determining the exact number of cases can help increasing the effectiveness of this strategy, as the use of funds can be tailored for the needs of this community. The budget and plan as it appears in this document has been determined based on the average rates of infection among the American Indian and Alaska Native population. However, should rates be higher or lower the budget can be modified as appropriate. For instance, if the infection rate is lower, funds can be diverted from treatment to be applied to prevention efforts. The screening process, however, is not a simple matter of sitting the patient down and taking some blood. As discussed above, cultural stigmas about homosexuality and HIV as well as denial about the serious threat that STDs pose obstacles to getting a realistic idea of how many individuals are infected.
Perhaps one of the biggest obstacles to effectively screening the population is the fear individuals have of being exposed. In a small community such as the Cheyenne River Sioux Reservation, the likelihood that an individual knows the health care providers that work at the clinics is high. Individuals may not get test for STDs out of fear that these friends are acquaintances could find out that the individual has HIV, Chlamydia, Syphilis, etc. For this reason, the STD screening will be managed by the doctor and four nurse practitioners that are being brought in. These individuals will be unknown to the community and the fear of being exposed may be greatly lessened. To further increase confidentiality, an identification number, rather than a name, can be used in association with the test. In this way, no one at the clinics will know the names of the individuals being tested or the names of individuals that test positive for HIV infection.
It is also important to assess the level of knowledge about STDs. Because prevention of STDs relies heavily on individuals making educated decisions, improving the community’s knowledge is a priority for reducing transmission. Performing a sample survey of individuals can indicate what knowledge gaps exist. This can include surveys in the clinics as well as sending out questionnaires through the mail. The approach to educating the community can then be modified according to the level of general knowledge about the disease. For instance, if it’s found that an overwhelming number of individuals do not know how HIV is transmitted, more emphasis can be placed on education regarding transmission.
It is up to each individual to make choices that will protect themselves from infection of an STD. Therefore, the education of the members of the reservation is critical to the overall success of the project. First, we must educate the educators. For the staff of the Department of Health, this means ensuring they are up-to-date and informed as to how STDS are transmitted, what the symptoms of the various STDs are, the ways in which transmission can be limited, and ways to convey this information to the community. For the nurses and doctor that have been brought in for this project, educating the educator also means learning about the aspects of American Indian culture that can make discussing STDs and promoting safer sex and STD testing difficult.
Therefore, we will hold a workshop at the beginning of the project that will educate our staff as well as give everyone an opportunity to get to know one other. The doctor and nurses that have been brought in will have been selected for their experience with HIV/AIDS and will lead the portion on statistics, symptoms, diagnosis, and treatment. The staff of the tribal health department will, on the other hand, lead the portion of the workshop dealing will cultural differences and tribal customs and traditions as they relate to addressing HIV and STDs in the tribal population. It is expected that moving forward from the workshop, the team will help each other in learning and overcoming obstacles that they may face.
Additionally, the team will complete online HIV prevention tool kit designed by the NNAACP. The tool kit is a six module program that aims to enhance knowledge, skills, abilities, attitudes, and behaviors as they pertain to HIV/AIDS prevention among Native peoples. The six modules go through Native Cultural Diversity, Historical and Socioeconomic Health Risks, Epidemiology of HIV/AIDS among Native Communities, Foundation of a Prevention Program, Conducting a Community Services Assessment, and Evaluation. This all encompassing training program can be applied in all stages of this pilot project.9 This training will not only help in the success of this pilot project but will also help in the continuation of this plan at the end of the three-year budget period.
The best way to educate the community is to talk with individuals on a regular basis and the team should use every opportunity to educate individuals about STDs, whether informally or formally. Whenever patients come into the clinic the doctors and nurses should chat a little about STD prevention and screening. Information should always be available patients for to take with them. Additionally, workshops should be held at the local clinics for interested individuals. Advertisements outlining the availability of STD testing and that contain relevant information should be posted where appropriate.
It is also important that individuals that have tested positive for non-HIV diseases be treated as soon as possible. As stated above, open sores can provide a means of entry for HIV so it is important to treat Syphilis, Gonorrhea, and Chlamydia. Individuals should also be made aware that open sores can be a means of transmission.
It is important that at the end of the each year a basic assessment is conducted. This should include number of individuals screened for STDS, number of individuals that tested positive for one or more STDs, and number of individuals that were treated for an STD. At the end of the three year program, a more thorough assessment is should be made and final report will be produced. This report will include the information gathered at the end of each year as well as any meaningful changes that were observed. Outcomes that we are striving for should be evaluated, including the following: increased testing for STDs, increased treatment of STDs, decreased transmission of STDs including HIV, and an overall increased knowledge of and use of preventative measures. Also, problems should be noted in this report and suggestions as to how to fix/improve on these issues should be provided. This report is not only important to determine what was accomplished by the project but will also be important for other groups to utilize when developing their own similar projects.
This plan can be applied to any tribe that has an existing healthcare system (of some sort) that could support the implementation of this plan. Based on the success of this pilot project, tribes could apply for grants from the CDC and the IHS under their HIV prevention programs. Larger tribes, such as the Cherokee and Navajo, who has sources of funding, coming in from casinos, may not even need to apply for outside funding.
It will be more challenging to implement this plan in smaller tribes that do not have an existing health care infrastructure. More money would be needed to sustain the project, as use of the Health Department as it occurs in this pilot, would not be an option. It may be necessary for tribes to get assistance in establishing their own government and healthcare systems before this particular plan could be implemented in their communities.
Perhaps the biggest need going into the future is more research as to the rates of infection in specific tribes. Although there is information on the infection rates of the overall American Indian and Alaska Native population, there is little information as to what the infection rates of specific tribes are and how different tribe-dependent factors may influence the rate of infection.
An electronic version of this report as well as links to other organizations involved in the Health and Success of the American Indian Nation can be found at:
http://www.biology.ccsu.edu/doan/crspilotprogram.htmReferences