Indian Health Service: HIV/AIDS Prevention and Treatment Services for American Indians and Alaska Natives
Released: 2007-12-14T00:00:00

Letter

Background

For fiscal year 2007, IHS projected a user population of about 1.5 million individuals, or about 35 percent of the population who identified themselves as American Indian or Alaska Native in the 2000 U.S. Census.

Not all persons self-identifying as American Indians and Alaska Natives in the U.S. Census are members of federally recognized tribes or descendents of such members; therefore they are not all eligible for IHS services. However, more than half of the federally recognized American Indian and Alaska Native population does not permanently reside on a reservation and therefore may have limited or no access to IHS services because of their distance from IHS-funded facilities.

In addition to its headquarters in Rockville, Maryland, IHS consists of a system of IHS-funded facilities organized into 12 geographic areas of various sizes and containing different types of facilities. Each of the 12 areas has an area office, an administrative body that may include an area director, a chief medical officer, and other staff who oversee the area’s budget and programs. See figure 1 for a map of the counties included in the 12 IHS areas. These facilities are IHS-operated, tribally operated, or overseen by the UIHP. IHS areas include more than 650 of these IHS-funded health care facilities, including hospitals, health centers, health stations, and UIHP facilities. These facilities mainly offer primary care to small, rural populations, with a limited number of larger health care facilities providing specialty care, such as treatment of HIV/AIDS. The types of facilities in each area vary. For example, the California area has no IHS-funded hospitals, while the Aberdeen area has nine small hospitals. The estimated IHS user population in each of the 12 areas ranges from about 24,000 to about 310,000 (see table 1).

For fiscal year 2006, Congress appropriated approximately $2.7 billion to IHS to primarily provide direct care at IHS-funded facilities and to purchase care outside of IHS through contracts. From this appropriation, IHS also funds public health nursing, health education, and other functions. In addition, in fiscal year 2006, IHS received reimbursements of $681 million from Medicare, Medicaid, and private health insurance, with Medicare and Medicaid contributing almost 90 percent of those reimbursements. These reimbursements were for treatment at IHS-funded facilities of patients who were eligible for Medicare and Medicaid, in addition to IHS health care. More than 50 percent of IHS’s budget supports tribally operated facilities and around 1 percent supports UIHP facilities. Out of the total appropriated for services, approximately $500 million was designated for contract health services. For services that IHS-funded facilities cannot provide, the contract health services funding is used to purchase care for eligible American Indians and Alaska Natives through contracts with outside providers. For example, contract health services money has been used to purchase specialty care that may not be available at a patient’s local IHS-funded facility, such as behavioral health care. While IHS tracks the overall costs of providing health services, it does not itemize those costs by disease; therefore the agency does not track the cost for its facilities to provide HIV/AIDS prevention and treatment services.

HIV/AIDS Prevention Strategies

According to HHS, efforts are under way—primarily by CDC—to fund prevention programs to educate people at highest risk, as well as the general public, about HIV/AIDS and preventing or reducing their risk. CDC reports that HIV prevention programs can include strategies such as the following.

HIV testing and counseling. According to CDC, individuals at risk for HIV should be offered testing and counseling so that they can be aware of their status and take steps to protect their own health and that of their partners. Testing is a key HIV prevention strategy because, as CDC estimates, more than half of HIV infections are transmitted by individuals who are unaware of their infection. Recently available HIV rapid test results are available the same day, in contrast to traditional lab-based testing that can take up to 2 weeks to provide results. Thus rapid testing can help ensure that individuals receive their test result. Moreover, because rapid tests do not require lab facilities or highly trained staff, this type of test can expand access to testing in both clinical and nonclinical settings; however, rapid tests are more expensive than lab-based tests. In addition to testing, counseling services offer patients ways to eliminate or reduce their risk for HIV infection.

Partner notification. Sexual or needle-sharing partners of HIV-positive individuals have been exposed to HIV and may be infected. Partner notification services attempt to locate these individuals based on information provided by the patient to provide counseling, education, and other services to prevent infection or, if the individual is infected, provide referrals to care.

Health education and risk reduction. Health education provides individuals with the skills and information necessary to avoid or reduce behaviors that put them at risk for HIV infection. Health education services can include individual, group, school, and community interventions, as well as outreach to HIV-positive individuals and HIV- negative individuals at high risk. These services can also include health communication and public information programs for individuals at high risk and the general public. Risk reduction activities can include condom distribution and needle exchange programs.

HIV/AIDS Treatment Strategies and Barriers to Care

HHS issues guidelines for the medical management of HIV and issues surrounding HIV infection. The guideline documents are periodically reviewed and updated by panels of HIV experts, because concepts relevant to management of HIV change rapidly. The recommended treatment for HIV is a combination of three or more drugs, called Highly Active Antiretroviral Therapy (HAART). HAART is used to slow the progression of HIV/AIDS and has reduced the number of HIV/AIDS deaths, but it may have side effects and requires adherence to complicated drug regimens. Additionally, although these drugs can treat HIV infection, HIV cannot be cured. A 2004 Kaiser Family Foundation report estimated the annual cost for providing these drugs was between $10,000 and $12,000 per patient.

Beyond drug regimens, patients with HIV/AIDS may require additional specialized care. According to CDC, proper management of HIV/AIDS involves a complex array of behavioral, psychosocial, and medical services, and therefore referral to a health care provider or facility experienced in caring for HIV-infected patients is advised. Treatment must be tailored to the patient’s needs and may include mental health services, substance abuse services, and medical case management, including treatment adherence services. Patients with HIV/AIDS may also require support services, such as housing or transportation assistance.

Patients with HIV/AIDS may face barriers to care. A 1998 study reported that patients with HIV/AIDS in both rural and urban areas experienced barriers to treatment services including a lack of knowledge about the disease, insufficient financial resources, and a lack of employment opportunities. Moreover, the study found that patients with HIV/AIDS in rural areas—compared to their urban counterparts—reported significantly greater need to travel long distances to medical facilities and personnel; a shortage of adequately trained medical and mental health professionals; a lack of personal or public transportation; and community stigma toward people living with HIV.

American Indians and Alaska Natives and HIV/AIDS

American Indians and Alaska Natives suffer from HIV/AIDS at higher rates than whites and from a range of other medical conditions at higher rates than the general population. CDC estimated that in 2005, a total of 1,581 American Indians and Alaska Natives were living with AIDS in the 50 states and the District of Columbia. CDC’s 2005 surveillance data also showed that of individuals diagnosed with AIDS from 1997 through 2004, American Indians and Alaska Natives died sooner after diagnosis than did individuals of all other races and ethnicities except blacks. In addition, women accounted for 24 percent of the estimated numbers of American Indians and Alaska Natives living with AIDS in 2005, compared with 12.5 percent for whites. The data also showed that the 10 states with the highest number of American Indians and Alaska Natives living with AIDS in 2005 were: (1) California, (2) Arizona, (3) Oklahoma, (4) Washington, (5) New York, (6) Alaska, (7) North Carolina, (8) New Mexico, (9) Minnesota, and (10) Texas. CDC’s estimate of the number of American Indians and Alaska Natives living with AIDS in the 12 IHS areas, which do not cover the entire United States, was 872 in 2005 (see table 2).

HIV/AIDS is one of many health concerns facing American Indians and Alaska Natives. While American Indians and Alaska Natives have the third highest rate of HIV/AIDS after blacks and Hispanics, the disease is not one of the top 10 leading causes of death for this population. Some of the major health concerns facing the population include diabetes; heart, liver, and cardiovascular diseases; cancer; unintentional injuries; obesity; substance abuse; and suicide. Given these numerous health concerns, as well as challenges related to poverty and unemployment, the National Alliance of State & Territorial AIDS Directors report that making HIV/AIDS a priority is often difficult for many American Indian and Alaska Native communities.

Although HIV/AIDS is not among the major health concerns for the population, American Indians and Alaska Natives experience high rates of risk factors for HIV infection, such as sexually transmitted diseases and poverty-related conditions. According to 2005 CDC surveillance data by race or ethnicity, American Indians and Alaska Natives had the second highest rates of gonorrhea and chlamydia and the third highest rate of syphilis. CDC notes that these rates suggest that the sexual behaviors that facilitate the spread of HIV are relatively common among American Indians and Alaska Natives. In addition to sexually transmitted diseases, alcohol and drug abuse—which are prevalent in the American Indian and Alaska Native community—are risk factors for HIV transmission. Moreover, conditions related to poverty, such as lower levels of education and poorer access to health care, may increase the risk for HIV infection. During 2002 through 2004, approximately one quarter of American Indians and Alaska Natives―about twice the national average―were living in poverty. American Indians and Alaska Natives also have poorer access to health care than other racial and ethnic groups, with 21 percent of American Indians and Alaska Natives lacking a usual source of medical care, compared to 18 percent of whites in 2004.

Furthermore, American Indians and Alaska Natives may be less likely to be tested for HIV than persons of other racial and ethnic groups because of location and confidentiality concerns. For example, those who live in rural areas may be less likely to be tested for HIV because of limited access to testing. While access to preventive services, such as testing, is a problem for rural populations in general, more American Indians and Alaska Natives, compared with persons of other races and ethnicities, resided in rural areas at the time of their AIDS diagnosis. Also, American Indians and Alaska Natives may be less likely to seek testing because of concerns about confidentiality in close-knit communities, where someone who seeks testing is likely to encounter a friend, relative, or acquaintance at the local health care facility.

American Indians and Alaska Natives May Access Services outside of IHS

Many American Indians and Alaska Natives have health insurance coverage and may choose to access services outside of IHS. According to IHS, about 55 percent of the IHS user population has some form of public or private coverage. Of this, about 43 percent are eligible for Medicaid or Medicare. Depending on their eligibility and resources, American Indians and Alaska Natives may have access to health care at facilities available to the general population, such as public or private hospitals and community health centers.

For HIV/AIDS care, American Indians and Alaska Natives may also access services at Ryan White-funded facilities. The Ryan White Program provides funding to states, territories, metropolitan areas, and other public or private nonprofit entities to provide health care, medications, and support services to more than 500,000 medically underserved individuals and families affected by HIV or AIDS, including American Indians and Alaska Natives. Specifically, services include outpatient medical and dental care, prescription drugs, case management, home health care, and hospice care.

IHS HIV/AIDS Prevention Services Generally Were Available, but Varied Across Areas

IHS area officials reported that HIV/AIDS prevention services were generally available in all 12 areas. HIV/AIDS education was available in every IHS area. Testing services were also available in every IHS area, though the type and extent of the services varied. In addition to education and testing services, officials in some areas mentioned that some facilities provided other services as part of their HIV/AIDS prevention activities, such as condom distribution and partner notification.

HIV/AIDS Education Was Provided in All Areas

Officials from IHS area offices reported that HIV/AIDS education services were offered in all 12 areas. Education was provided by a variety of staff, including practitioners, such as physicians and nurses, during medical appointments; tribal health educators; and community health representatives, in various settings, including IHS-funded facilities, tribal health departments, schools, health fairs, and prisons. For example, one provider said that she held bingo nights at an UIHP facility, beginning the evening with an HIV education speaker or presentation. Two tribal health educators and an UIHP official said that they played quiz show games with youth to teach them about HIV/AIDS.

IHS officials and tribal health educators noted that HIV/AIDS education materials were available; however, there were challenges with using these materials. Officials in four areas—Albuquerque, Oklahoma City, Portland, and Tucson—noted concerns with the cultural appropriateness of HIV/AIDS education materials. Two tribal health educators reported using materials from sources outside of IHS, such as the American Red Cross and Advocates for Youth; however, they modified their presentations to make them more appropriate and easy to understand. For example, the tribal educators mentioned that they modified the wording of an HIV prevention curriculum’s activity to make it more relevant to their groups. Additionally, one area official said that educators had to revise the materials to a reading level where they could be understood by the target audience. Despite these education efforts, some IHS officials and advocacy groups noted that misconceptions about HIV/AIDS remained among some in the American Indian and Alaska Native community—for example, that the disease could be contracted from a toilet seat or that only men who have sex with men could become infected.

Some HIV Testing Services Were Available in All Areas, but Type and Extent of Services Varied

According to IHS officials and service providers, HIV testing services were offered in all 12 IHS areas, but some officials said that services were not available at all facilities. Additionally, the type of testing that was available varied. IHS officials reported that HIV testing was offered primarily to pregnant women and those at high risk for HIV/AIDS. IHS HIV testing services included both lab-based and rapid tests, with officials in 9 IHS areas—Aberdeen, Alaska, Albuquerque, Billings, California, Nashville, Oklahoma City, Phoenix, and Portland—reporting that rapid testing was available in one or more of their facilities. IHS officials reported advantages to rapid testing, including the ability to test pregnant women who were in labor or patients presenting in emergency rooms, and to provide quick results to patients at high risk who are unlikely to return to the facility to receive the results from lab-based tests. Officials in three areas—Aberdeen, Phoenix, and Tucson—reported that some patients do not return to pick up their lab-based HIV test results. However, some IHS officials reported that cost was a barrier to adopting the more expensive rapid testing and that staff required additional training to administer the tests. To address this concern, one area reported providing funding for training on rapid HIV testing for clinical staff.

Although testing services were available to some extent in all areas, some IHS officials and advocacy groups expressed concern that some American Indians and Alaska Natives were not being tested for HIV. Officials in one area reported that some IHS health care providers may not feel comfortable discussing sexuality, and as a result they may not offer testing to patients in groups at high risk. An official in another area reported that, given more prevalent health concerns, providers did not always discuss HIV/AIDS. An official in a third area said that, while IHS-funded facilities offer testing, there was still a segment of the population who were not tested until they showed symptoms of HIV. In addition, according to IHS officials and advocacy groups, some American Indians and Alaska Natives did not seek or declined testing within IHS due to lack of awareness about the disease, confidentiality concerns, and stigma surrounding the disease. For example, one UIHP facility staff member said that she usually referred individuals to the county health department for HIV testing because the facility’s clients were afraid that their test results would be revealed to IHS staff, many of whom the patients know. An official at one organization that provides case management to American Indians and Alaska Natives reported that some patients did not seek testing because there was a local belief that by being tested one was wishing the disease on oneself.

Other Prevention Services Were Provided

In addition to HIV testing and education services, IHS officials described some other services that were provided as part of their HIV/AIDS prevention activities. Some IHS officials mentioned that IHS facilities were involved in partner notification. For example, an official from one area said that public health nurses notified partners of patients with HIV and other sexually transmitted diseases, followed up with the partners about their testing needs, and provided additional counseling. In addition, officials in some areas mentioned that facilities in their areas distributed condoms as part of their HIV/AIDS prevention activities. For example, a provider in one area made condoms available in every exam room at the IHS facilities in the area so that patients were no longer ashamed or embarrassed about seeing, taking, or asking about condoms. Finally, officials in two areas mentioned that tribes in their area had a needle exchange program.

Some IHS Facilities Provided HIV/AIDS Treatment Services, but Most American Indians and Alaska Natives Received Services from Outside Providers for a Variety of Reasons

While some IHS facilities offered HIV/AIDS treatment services, area officials reported that most patients received treatment from providers at facilities outside of IHS. Five IHS-funded hospitals regularly treated patients and had staff dedicated to providing HIV/AIDS treatment. While other facilities provided limited HIV/AIDS treatment, most relied on outside providers, such as Ryan White-funded facilities or local hospitals. Area officials reported that some patients with HIV/AIDS may not access or continue treatment due to a variety of reasons, including lack of transportation.

Five IHS Facilities Regularly Treated Patients with HIV/AIDS

Of the more than 45 IHS-funded hospitals, officials from IHS headquarters and facilities identified 5 hospitals that regularly treated patients with HIV/AIDS. According to IHS headquarters, 3 facilities have committed the most resources to sustaining HIV/AIDS treatment services: the Alaska Native Medical Center in the Alaska area, the Gallup Indian Medical Center in the Navajo area, and the HIV Center of Excellence at the Phoenix Indian Medical Center in the Phoenix area. For example, the Phoenix Indian Medical Center had staff such as a physician experienced in treating HIV/AIDS and an HIV clinical pharmacist providing HIV/AIDS treatment services. IHS officials reported that treatment services were also regularly provided at 2 other IHS facilities: the Albuquerque Indian Hospital in the Albuquerque area and the W.W. Hastings Indian Medical Center in the Oklahoma City area. These 2 facilities each relied on one physician who regularly treated patients with HIV/AIDS. Both physicians reported seeing patients with HIV/AIDS for over 15 years and continue to provide services to patients.

Officials from all five of the facilities that regularly treated patients with HIV/AIDS said that some patients received HIV/AIDS services from outside providers. In some cases, the IHS facilities coordinated with outside providers for some HIV/AIDS services. For example, patients at the Gallup Indian Medical Center and the Albuquerque Indian Hospital received case management services outside of IHS. The Gallup Indian Medical Center worked with staff from the Navajo AIDS Network, an organization that provides case management services—including in the Navajo language— to American Indians and Alaska Natives with HIV/AIDS. In addition, the Phoenix Indian Medical Center’s HIV pharmacist arranged for Medicaid- eligible patients to receive their HIV drugs by mail through a pharmacy outside of IHS.

Other IHS Facilities Provided Limited HIV/AIDS Treatment, but Most Referred Patients to Outside Providers

Several area officials reported that some of the other IHS facilities provided limited HIV/AIDS treatment services, but most facilities referred patients to outside providers. For example, some facilities had physicians with experience treating HIV/AIDS or provided case management services to patients with HIV/AIDS. According to officials from five areas— Aberdeen, Alaska, Bemidji, Nashville, and Oklahoma City—the facilities that provided HIV/AIDS treatment services were generally larger IHS- funded facilities, particularly hospitals. For example, IHS reported that at least 13 physicians with experience treating HIV/AIDS worked at IHS hospitals other than the five facilities that regularly provided care. At some facilities that did not regularly offer HIV/AIDS treatment services, staff made efforts to provide care when needed. For example, officials in two areas—Albuquerque and Bemidji—reported that staff at a facility in their area had used a hotline to obtain HIV/AIDS treatment information. In addition, one UIHP facility in the California area, which has no IHS-funded hospitals, contracted with an HIV/AIDS specialist outside of IHS to provide treatment services at the facility once a week. However, officials reported that none of the other facilities in the area provided HIV/AIDS treatment services.

Officials from all 12 areas reported that some patients with HIV/AIDS were treated outside of IHS, citing a variety of settings. Officials in 8 areas— Aberdeen, Alaska, Albuquerque, Billings, Nashville, Oklahoma City, Phoenix, and Tucson—reported that patients in their areas received care from Ryan White-funded facilities. According to HRSA, in 2005 more than 950 of the 2,463 Ryan White-funded facilities across the United States provided services to one or more American Indians or Alaska Natives with HIV/AIDS. In addition, IHS officials noted that American Indians and Alaska Natives may receive HIV/AIDS treatment services from local hospitals or from physicians in private practice. Some patients who receive HIV/AIDS treatment outside of IHS may continue to receive other types of health care from IHS-funded facilities. For example, one IHS official reported that these patients might see a specialist quarterly or once a year for their HIV/AIDS treatment services and an IHS provider for routine care. An official for another area reported that of those patients referred to other providers for HIV/AIDS services, most stay with their IHS-funded facility for their other health care services.

IHS area officials noted several reasons why IHS-funded facilities in their areas did not provide HIV/AIDS treatment services.

Too few patients and limited experience. Officials for six areas— Albuquerque, Bemidji, California, Nashville, Oklahoma City, and Portland—reported that some facilities did not provide treatment because they did not have any patients known to have the disease. Officials for eight areas—Aberdeen, Albuquerque, Bemidji, Billings, Oklahoma City, Phoenix, Portland, and Tucson—reported that providers’ lack of training or experience related to HIV/AIDS were reasons why HIV/AIDS treatment was not provided at some facilities. Chief medical officers from four of the eight areas cited frequently changing HIV/AIDS treatment protocols as a reason why providers might not feel comfortable treating the disease.

Allocation of limited resources. Officials for 10 areas—Aberdeen, Albuquerque, Bemidji, Billings, California, Nashville, Oklahoma City, Phoenix, Portland, and Tucson—cited limited IHS resources, such as funding or staff, as a reason for referring patients outside IHS. Officials for 4 of the 10 areas said that, given IHS’s limited resources, including limited staff, and the availability of HIV/AIDS services outside of IHS, they preferred to refer patients to outside providers rather than provide HIV/AIDS treatment services in-house. In addition, officials in 4 of the 10 areas reported that their pharmacies do not provide HAART because of the high cost of the HIV/AIDS drugs or because too few patients seek those drugs from IHS.

Other health concerns. Officials in six areas—Alaska, Bemidji, Billings, Oklahoma City, Portland, and Tucson—mentioned that their areas have other health concerns that take precedence over HIV/AIDS. Among the other more prevalent health concerns mentioned were unintentional injuries and diabetes. Moreover, while area officials listed diabetes, accidents, and heart disease as some of the 10 leading causes of death in their area, only the California area officials listed HIV/AIDS as one of the 10 leading causes of death in their area. See appendix I for the reasons why IHS-funded facilities did not provide HIV/AIDS treatment services, by area.

Some American Indians and Alaska Natives with HIV/AIDS May Not Access or Continue Treatment

IHS area officials and facility providers noted that some American Indians and Alaska Natives with HIV/AIDS may not access or continue care, even if treatment is available, for reasons such as concerns about confidentiality and lack of transportation. Officials in the 12 IHS areas reported that patients’ concerns with confidentiality and stigma in close- knit communities were reasons why some patients did not access care from IHS. Officials from 7 areas—Aberdeen, Alaska, Bemidji, California, Navajo, Oklahoma City, and Portland—reported that some patients with HIV/AIDS were concerned that their friends or relatives who work or access services at IHS would learn about their HIV status. For example, an official for one rural area said that in villages many people are related to IHS community health aides and other service providers, which increases patients’ reluctance to disclose their HIV status and seek HIV/AIDS treatment services. Officials in 7 areas—Alaska, Albuquerque, Bemidji, Billings, Oklahoma City, Phoenix, and Tucson—mentioned that distance to HIV/AIDS treatment services or lack of transportation may affect American Indians’ and Alaska Natives’ ability to access care. Officials in one area reported knowing of an isolated region in one state in the area that had “clear unmet needs” because it was located 300 miles from any facilities—IHS or otherwise—with HIV/AIDS treatment services. In one urban area, an official reported that relying on public transportation was a barrier to treatment because it can be unreliable and unaffordable for many clients. Area officials in Albuquerque, Phoenix, and Navajo said that patients may not access treatment because of cultural reasons. One official noted that traditional healing practices may take priority over western medicine. In addition, this official noted that, in some communities, family obligations may also take priority over treatment. For example, he said that a patient may miss an appointment because he or she chose to be with a sick family member in another state.

Some area officials reported that there were other factors that could affect a patient’s continuation of HIV/AIDS treatment, such as alcohol or drug abuse or lack of housing. Officials for five areas—Alaska, Albuquerque, Navajo, Phoenix, and Tucson—cited concerns with patients with HIV/AIDS adhering to their treatment programs, partly due to substance abuse. In addition, officials for two IHS-funded facilities noted that housing can be of concern. For example, one of the facility officials said that an HIV-positive patient from a small community moved to a nearby city because the patient’s home lacked both heat and water, compromising the patient’s health. See appendix I for the reasons why American Indians and Alaska Natives with HIV/AIDS did not access or continue HIV/AIDS treatment services, by area.

IHS Has HIV/AIDS Outreach and Planning, Capacity Building, and Surveillance Initiatives

IHS has undertaken outreach and planning, capacity building, and surveillance initiatives related to HIV/AIDS. These initiatives are overseen by national and area-level officials. IHS’s outreach and planning initiatives include an HIV/AIDS program Web site, an HIV listserv, and a national HIV/AIDS administrative work plan. IHS has also carried out several initiatives aimed at building the capacity of its providers to offer HIV/AIDS-related prevention and treatment services, such as training of health care providers and implementation of an HIV-related data system. Additionally, IHS has undertaken initiatives related to improving the surveillance of HIV/AIDS in the American Indian and Alaska Native population by developing a prenatal HIV screening measure and an early detection surveillance system.

IHS HIV/AIDS Initiatives Oversight

IHS initiatives related to HIV/AIDS are overseen by a national IHS HIV/AIDS program official or by officials at the area level. The national program is coordinated by an HIV/AIDS principal consultant, the only full- time staff member dedicated to these initiatives. Program initiatives are often conducted in collaboration with other IHS personnel and are supported by IHS and outside funding sources, such as the Minority AIDS Initiative. These additional IHS personnel who support IHS’s HIV/AIDS initiatives do so in addition to other full-time duties. At the area level, HIV/AIDS initiatives are often conducted as part of broader health promotion and disease prevention programs. Officials in five areas reported having staff who acted as area HIV/AIDS coordinators, but few of those staff worked full-time on HIV/AIDS and all had other duties, such as providing behavioral health education or acting as a consultant for other diseases.

Outreach and Planning Initiatives

IHS has undertaken several outreach and planning initiatives, including an HIV/AIDS program Web site, an HIV listserv, and a national HIV/AIDS administrative work plan.

Web site. A public Web site, www.ihs.gov/MedicalPrograms/HIVAIDS, contains information on American Indian and Alaska Native-related HIV/AIDS research, HIV/AIDS clinical treatment guidelines, and links to other relevant Web sites, including grant and funding resources. It was launched March 21, 2007, on the first National Native HIV/AIDS Awareness Day. As of July 2007, the Web site had more than 3,500 unique visitors, an average of 36 visits a day, according to an IHS official.

Listserv. The HIV/AIDS principal consultant operates an HIV listserv, which e-mails information of general interest to those working with American Indians and Alaska Natives with HIV/AIDS, such as HIV/AIDS- related news, recent research, and funding opportunities. An IHS official reported that the listserv included about 650 individuals, including American Indian and Alaska Native community members and officials from IHS, tribes, and American Indian and Alaska Native advocacy groups.

HIV/AIDS administrative work plan. According to IHS, as of September 2007, a national IHS HIV/AIDS administrative work plan was nearing completion. The plan is intended to integrate multiple activities to help improve IHS surveillance, information sharing, and data collection. The plan will determine HIV/AIDS intervention priority areas, describe the activities to be conducted within each priority area, and identify key personnel and organizations with responsibility for each activity. The plan is also intended to be a 3-year administrative blueprint for further development and progression of the HIV/AIDS program. As of September 2007, the plan was in draft form and being circulated both within and outside of IHS for comment. The HIV/AIDS principal consultant said that the work plan would be finalized and issued in the fall of 2007.

Collaboration with other organizations. IHS had signed or was developing memoranda of understanding with other organizations, including HRSA and the Substance Abuse and Mental Health Services Administration (SAMHSA), on various HIV/AIDS activities. IHS and HRSA have signed a 3-year memorandum of understanding to collaborate on multiple HIV/AIDS initiatives in an effort to decrease duplication of services, increase awareness of common resources, and improve coordination and quality of services to American Indians and Alaska Natives. IHS and SAMHSA were developing a memorandum of understanding to train IHS staff to conduct HIV/AIDS rapid testing. The memorandum was expected to be implemented in early 2008. In addition, six areas reported working with local organizations on HIV/AIDS initiatives. For example, an official in the Aberdeen area reported that the area has an HIV/AIDS task force consisting of clinical providers, community health representatives, and HIV coordinators from state health departments in the Aberdeen area. The taskforce is initiating an HIV strategic plan for the area.

Capacity Building Initiatives

IHS also has carried out several initiatives aimed at building the capacity of providers to offer HIV/AIDS-related prevention and treatment services.

HIV/AIDS collaborative training. IHS provides HIV/AIDS training for IHS-funded staff in 2-and-1/2-day sessions funded by HHS’s Minority AIDS Initiative. Since fiscal year 2005, the sessions have focused on HIV/AIDS behavioral health issues, capacity and partnership building, and related intervention strategies. Topics for training to be conducted during 2007 and 2008 include: reporting, data collection, best practice models, clinical practice issues, prevention policies and procedures, and culturally appropriate pre- and posttest counseling interview techniques. IHS also plans to use this funding to conduct a 1-day Traditional Healers Summit to discuss HIV/AIDS with traditional healers. IHS officials noted this would be the first training of this kind for any disease.

Training IHS community health representatives. IHS also received funding from the Minority AIDS Initiative to provide community health representatives with HIV/AIDS-related training. These training sessions will be presented by health care professionals and will teach community health representatives about facts, fears, and public perceptions about sexually transmitted diseases, including HIV/AIDS. Community health representatives will also be coached on how to present this information on their reservations. These sessions were scheduled to take place in November 2007.

Area-organized training and conferences. In addition to training overseen by the IHS HIV/AIDS Program, officials from eight area offices reported offering HIV/AIDS regional training sessions or conferences to tribal leaders, clinical providers, and community members. For example, the Aberdeen area holds an annual conference on HIV/AIDS where attendees learn about local resources, funding resources, and possible partnership opportunities with IHS, the state, and tribes.

HIV/AIDS telemedicine support network. With Minority AIDS Initiative funding, the HIV Center of Excellence in the Phoenix Indian Medical Center created an HIV/AIDS telemedicine support network for health care providers in IHS-operated, tribally operated, and UIHP facilities to expand the quality and availability of HIV/AIDS communication, training, support, and expert consultation. An IHS official said that the goal of this network is to increase the availability of HIV/AIDS treatment by providing facilities with access to HIV/AIDS experts and consultants. The network is still in the developmental stages and, according to IHS, is initially being targeted to 16 IHS-funded facilities.

HIV Management System. In September 2006, IHS implemented its HIV Management System (HMS), a data system intended to help clinical providers and case managers provide quality care to HIV/AIDS patients and those at risk for the disease. When a facility enters its data into HMS, the system can generate quality-of-care audit reports or send reminders to providers when patients with HIV/AIDS need care. IHS officials could not estimate how many facilities will use HMS, noting that participation is voluntary. As of October 2007, staff from 12 facilities had been trained in how to use the system. HMS originally was funded by the Minority AIDS Initiative; however, IHS did not receive funding for fiscal year 2007 to continue this system. IHS officials said that despite the loss of funding they will continue to support HMS with IHS resources, but that some of their efforts, such as the evaluation of the program, will have to be curtailed. Officials said they plan to reapply for funding for fiscal year 2008.

Increased HIV testing. IHS also received funding in fiscal year 2007 from the Minority AIDS Initiative to continue to increase HIV screening at UIHP facilities. Seven awards of approximately $45,000 will be issued to urban facilities in order to enhance HIV testing, including rapid testing and standard lab-based testing, and to provide a more targeted effort to address HIV/AIDS prevention in some of the largest urban American Indian and Alaska Native populations in the United States. This initiative is expected to expand services to patients, build IHS’s testing capacity, and collect data about barriers to testing services.

Surveillance Initiatives

IHS has undertaken two initiatives to improve surveillance of HIV/AIDS in the American Indian and Alaska Native population.

Prenatal HIV screening. In 2005, IHS implemented a new Government Performance and Results Act measure that examines the percentage of pregnant IHS patients screened for HIV in a year. The 2006 target for this measure was 55 percent of IHS’s pregnant patients screened for HIV within the last year; the actual percentage of patients screened was 65 percent. For 2007, IHS’s target was to ensure that the proportion of pregnant female patients screened for HIV did not decrease more than 1 percent from the 2006 level. For 2007, the percentages of pregnant women screened by IHS ranged from 48 percent to 88 percent among the areas, with an overall screening rate of 74 percent.

Early detection surveillance system. With funding from the Minority AIDS Initiative, IHS is developing a national early warning system to detect increases in the rate of HIV infection for American Indian and Alaska Native populations at high risk. This initiative aims to enhance and improve screening for HIV in prenatal populations by examining a sample of IHS facilities from which data are collected electronically. From this sample, IHS wants to be able to detect any changes in the rates of HIV infection among pregnant women. In addition, the initiative includes conducting a knowledge, attitude, and practice survey of health care professionals on CDC’s new, broader HIV screening guidelines to identify misunderstandings and obstacles and accelerate the adoption of the new guidelines in IHS funded-facilities. An IHS official said that the survey was being developed and was expected to be completed by December 2007. The early surveillance initiative also seeks to analyze the rate of HIV screening among patients who have tested positive for a sexually transmitted disease, patients who have tested positive for other diseases that typically coexist with HIV/AIDS, and unique individuals screened for HIV in order to estimate the proportion of the IHS user population who are aware of their HIV status.

Agency Comments and Our Evaluation

We provided a draft of this report to HHS for comments from IHS, CDC, and HRSA. We received written comments from HHS. HHS substantially agreed with the findings of our report and offered technical comments to provide additional information or clarify specific findings, which we incorporated as appropriate. The letter included with HHS’s comments is reprinted in appendix II.

Generally, HHS’s technical comments requested that we provide additional context about IHS’s capacity to provide HIV/AIDS prevention and treatment services. HHS commented that IHS is mainly a primary care system and generally relies on providers outside of IHS for HIV/AIDS treatment services. HHS stated that IHS generally refers patients with HIV/AIDS to outside providers as they do for other complex conditions, such as cancer and heart disease. In addition, HHS noted that the barriers to HIV/AIDS testing and misconceptions about the disease mentioned in this report are not unique to the American Indian and Alaska Native communities.

We are sending copies of this report to the Secretary of Health and Human Services. We will also make copies available to others on request. In addition, the report will be available at no charge on GAO’s Web site at http://www.gao.gov.

If you or your staff have questions about this report, please contact me at (202) 512-7114 or ekstrandl@gao.gov. Contact points for our Office of Congressional Relations and Public Affairs may be found on the last page of this report. GAO staff who made major contributions to this report are listed in appendix III.

Appendix I: Reasons Why Treatment Services May Not Be Offered or Accessed, as Reported by IHS Area Officials

Reasons why some IHS-funded

Appendix II: Comments from the Indian Health Service

Appendix III: GAO Contact and Staff Acknowledgments

GAO Contact

Acknowledgments

In addition to the contact named above, Karen Doran, Assistant Director; Catina Bradley; Adrienne Griffin; Christina Ritchie; Eden Savino; and Timothy Walker made key contributions to this report.

Related GAO Products

Ryan White CARE Act: Changes Needed to Improve the Distribution of Funding. GAO-06-703T. Washington, D.C.: April 27, 2006.

Ryan White CARE Act: AIDS Drug Assistance Programs, Perinatal HIV Transmission, and Partner Notification. GAO-06-681T. Washington, D.C.: April 26, 2006.

Ryan White CARE Act: Improved Oversight Needed to Ensure AIDS Drug Assistance Programs Obtain Best Prices for Drugs. GAO-06-646. Washington, D.C.: April 26, 2006.

HIV/AIDS: Changes Needed to Improve the Distribution of Ryan White CARE Act and Housing Funds. GAO-06-332. Washington, D.C.: February 28, 2006.

Indian Health Service: Health Care Services Are Not Always Available to Native Americans. GAO-05-789. Washington, D.C.: August 31, 2005.

Ryan White CARE Act: Factors that Impact HIV and AIDS Funding and Client Coverage. GAO-05-841T. Washington, D.C.: June 23, 2005.