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

Fast Facts:

Highlights:
section_title: Why GAO Did This Study
paragraphs: American Indians and Alaska Natives have the third highest rate of HIV/AIDS diagnosis in the United States. They are also more likely than individuals with HIV/AIDS from other racial and ethnic groups to receive treatment at later stages of the disease and have shorter life spans. The Indian Health Service (IHS), located within the Department of Health and Human Services (HHS), provides health care services, including HIV/AIDS treatment, to eligible American Indians and Alaska Natives. IHS patients with HIV/AIDS may also receive care through other sources depending on their access to private health insurance or their eligibility for other federal health care programs, such as Medicare and Medicaid. GAO examined the extent to which IHS provided (1) HIV/AIDS prevention services and (2) HIV/AIDS treatment services. GAO also examined (3) what other HIV/AIDS-related initiatives IHS has undertaken. GAO reviewed documents and interviewed officials from IHS headquarters, area offices, and IHS-funded facilities, as well as advocacy groups. We also conducted site visits in two IHS areas.
section_title: What GAO Found
paragraphs: HIV/AIDS prevention services were generally available from IHS, but these services varied across the 12 IHS areas. HIV/AIDS education was provided in all areas in a variety of settings, such as IHS-funded facilities, schools, and health fairs. In addition to education, IHS offered HIV testing services in all areas; however, the type and extent of services varied. In addition, some IHS officials described other services that were provided as part of their HIV/AIDS prevention activities, such as condom distribution. According to IHS officials, HIV/AIDS treatment services, while offered at some IHS facilities, were generally received outside of IHS. Five IHS-funded hospitals, such as the Phoenix Indian Medical Center in Arizona, regularly treated patients. Although some other IHS facilities provided limited treatment services, most relied on outside providers. For example, IHS patients with HIV/AIDS might see a specialist outside of IHS every 3 months for their HIV/AIDS treatment services and an IHS provider for other routine care. IHS officials reported that most IHS facilities did not provide treatment services because they had few American Indian or Alaska Native patients known to have HIV/AIDS, had limited resources, focused on other health concerns, or their providers had limited training or experience treating the disease. Additionally, some patients may not access or continue treatment from IHS or outside providers due to concerns about confidentiality and lack of transportation to distant facilities. IHS has undertaken outreach and planning, capacity building, and surveillance initiatives related to HIV/AIDS. These initiatives are overseen by national and area-level IHS officials. The outreach and planning initiatives include an HIV/AIDS Web site and the development of a national HIV/AIDS administrative work plan. IHS has also undertaken several initiatives aimed at building the capacity of providers to offer HIV/AIDS-related prevention and treatment services, such as training of health care providers and implementation of an HIV/AIDS-related data system that can send providers reminders when patients with HIV/AIDS need care. Finally, 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. GAO received written comments from HHS on a draft of this report. HHS substantially agreed with the findings of this report. HHS also offered technical comments to provide additional information or clarify specific findings, which we incorporated as appropriate.

section_title: Letter
paragraphs: Although they represent less than 1 percent of all HIV/AIDS reported  cases, American Indians and Alaska Natives had the third highest rate of  HIV/AIDS diagnosis in the United States after blacks and Hispanics in  2005. According to the Centers for Disease Control and Prevention (CDC),  an agency within the Department of Health and Human Services (HHS),  since the beginning of the epidemic through 2005, a cumulative total of  3,238 American Indians and Alaska Natives have been diagnosed with  AIDS. But this estimate may be understated because American Indians  and Alaska Natives, particularly those living in rural areas, may be less  likely to be tested. They may also be less likely to seek testing because of  concerns about confidentiality when living in close-knit communities.  Additionally, CDC and others have reported that American Indians and  Alaska Natives are more likely to receive treatment at later stages of the  disease and have shorter life spans compared to most other population  groups with HIV/AIDS. Furthermore, American Indians and Alaska Natives  experience disproportionately high rates of risk factors for HIV/AIDS, such  as sexually transmitted infections, substance abuse, and poor  socioeconomic conditions. For example, individuals who are under the  influence of alcohol or drugs are more likely to engage in high-risk  behavior that can put them at greater risk for contracting or spreading  HIV/AIDS.
The Indian Health Service (IHS), part of HHS, provides or arranges health  care services, including HIV/AIDS treatment, to eligible American Indians  and Alaska Natives. It provided or arranged services for a projected   1.5 million American Indians and Alaska Natives in fiscal year 2007, across  12 federally designated areas that cover all or part of 35 states. Services  are provided through IHS-funded facilities, including those operated by  IHS, those operated by tribes, and Urban Indian Health Program (UIHP)  facilities or through contracts with outside providers. Our prior work  found gaps in the health care services IHS provided for American Indians  and Alaska Natives that, in some cases, hindered American Indians and  Alaska Natives from obtaining needed services. In addition to IHS,  American Indians and Alaska Natives with HIV/AIDS may also receive care  through other sources depending on their access to private health  insurance; their eligibility for other federal health care programs, such as  Medicare and Medicaid; or their eligibility for services provided by entities  funded through Ryan White Comprehensive AIDS Resources Emergency  (CARE) Act of 1990 grants.
Because access to HIV/AIDS prevention services can affect the number of  American Indians and Alaska Natives who have the disease and there may  be variation in the availability of treatment services, you asked us to  examine IHS’s efforts related to HIV/AIDS. Specifically, we examined the  extent to which IHS provides (1) HIV/AIDS prevention services and   (2) HIV/AIDS treatment services. We also examined (3) what other  HIV/AIDS-related initiatives IHS has undertaken.
To examine the extent to which IHS provides HIV/AIDS prevention  services, we interviewed the officials identified by IHS as the most  knowledgeable about HIV/AIDS services in each of the 12 area offices. The  area officials provided varying levels of detail about the IHS-funded  HIV/AIDS prevention services provided by the tribes in their area,  including those provided at tribally operated facilities. For example,   3 areas included officials from tribal organizations in these interviews,  while other area officials said they had limited knowledge of the HIV/AIDS  prevention services that were provided at tribally operated facilities. In  addition to the interviews, we also reviewed available IHS documentation  and interviewed relevant IHS officials about IHS’s budget, data systems,  and HIV/AIDS prevention services. In addition, we reviewed data from  CDC and HHS’s Health Resources and Services Administration (HRSA)  relevant to American Indians and Alaska Natives with HIV/AIDS. Finally,  we interviewed representatives from advocacy organizations, such as the  National Alliance of State & Territorial AIDS Directors, the National  Council of Urban Indian Health, the National Indian Health Board, and the  National Native American AIDS Prevention Center. We also visited 2 IHS  areas, Phoenix and Tucson, to interview officials from IHS-funded  facilities, tribal health departments, and Ryan White-funded facilities that  served American Indians and Alaska Natives. We selected the Phoenix  area in order to interview officials at the Phoenix Indian Medical Center,  which has the IHS HIV Center of Excellence. In addition, the state of  Arizona has the third largest population of American Indians and Alaska  Natives and the Phoenix area has the second highest number of American  Indians and Alaska Natives living with HIV/AIDS. Because of the Tucson  area’s close proximity to the Phoenix area and the expectation that there  would be some variation in the availability of HIV/AIDS services for  American Indians and Alaska Natives in the same state, we also visited  Tucson.
To examine the extent to which IHS provides HIV/AIDS treatment  services, we generally conducted the same activities that we used to  examine prevention services. Most of the area officials were able to  provide detailed information about the HIV/AIDS services for American  Indians and Alaska Natives in their area. We conducted additional  interviews with HIV/AIDS service providers both within and outside of IHS  in three areas: Albuquerque, in order to gain additional information about  the HIV/AIDS services in Colorado; Nashville, because the area provides  services in parts of 14 states; and Phoenix, in order to gain additional  information about HIV/AIDS services in Nevada. For example, we  interviewed IHS physicians with experience treating patients with  HIV/AIDS and staff at IHS-funded facilities and Ryan White-funded  facilities that treated American Indians and Alaska Natives patients with  HIV/AIDS. IHS officials and representatives from the National Native  American AIDS Prevention Center helped us to identify these providers. In  addition, we used data from HRSA, which administers the Ryan White  program, in order to identify Ryan White-funded facilities that provided  services to American Indians and Alaska Natives.
To examine what other HIV/AIDS-related initiatives IHS has undertaken,  we reviewed relevant IHS documents and data on HIV/AIDS. We also  interviewed IHS headquarters officials and those in the area offices  knowledgeable about IHS’s HIV/AIDS-related initiatives.
The information presented in this report is intended to provide a general  description of HIV/AIDS prevention and treatment services available to  American Indians and Alaska Natives through IHS. IHS does not routinely  collect data or create reports on HIV/AIDS and generally cannot track  spending or services provided specifically for HIV/AIDS. Moreover, tribes  generally are not required to report detailed information to IHS about the  health services they provide or facilities they operate using IHS funds.  Due to these data limitations, we relied on interviews with the area offices.  For each interview, we used a 21-item question set that contained open- ended questions. The area officials we interviewed provided varying levels  of detail to answer our questions, with six conducting brief surveys of  some of the facilities in their areas to provide information for GAO, while  others relied on their general knowledge. Because our questions were  open-ended, we cannot be sure that officials provided a complete list of all  services or activities they provide. Thus our information from these  interviews is illustrative only. We did not independently validate the  information provided by the area offices or contained in documents  obtained from IHS officials. However, we discussed any questions we had  about the information we received with the officials. We conducted our  work from September 2006 through November 2007 in accordance with  generally accepted government auditing standards.
subsections: section_title: Background
paragraphs: 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.
subsections: section_title: HIV/AIDS Prevention Strategies
paragraphs: 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.
section_title: HIV/AIDS Treatment Strategies and Barriers to Care
paragraphs: 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.
section_title: American Indians and Alaska Natives and HIV/AIDS
paragraphs: 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.
section_title: American Indians and Alaska Natives May Access Services outside of IHS
paragraphs: 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.
section_title: IHS HIV/AIDS Prevention Services Generally Were Available, but Varied Across Areas
paragraphs: 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.
subsections: section_title: HIV/AIDS Education Was Provided in All Areas
paragraphs: 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.
section_title: Some HIV Testing Services Were Available in All Areas, but Type and Extent of Services Varied
paragraphs: 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.
section_title: Other Prevention Services Were Provided
paragraphs: 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.
section_title: 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
paragraphs: 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.
subsections: section_title: Five IHS Facilities Regularly Treated Patients with HIV/AIDS
paragraphs: 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.
section_title: Other IHS Facilities Provided Limited HIV/AIDS Treatment, but Most Referred Patients to Outside Providers
paragraphs: 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.
section_title: Some American Indians and Alaska Natives with HIV/AIDS May Not Access or Continue Treatment
paragraphs: 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.
section_title: IHS Has HIV/AIDS Outreach and Planning, Capacity Building, and Surveillance Initiatives
paragraphs: 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.
subsections: section_title: IHS HIV/AIDS Initiatives Oversight
paragraphs: 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.
section_title: Outreach and Planning Initiatives
paragraphs: 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.
section_title: Capacity Building Initiatives
paragraphs: 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.
section_title: Surveillance Initiatives
paragraphs: 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.
section_title: Agency Comments and Our Evaluation
paragraphs: 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.
section_title: Appendix I: Reasons Why Treatment Services May Not Be Offered or Accessed, as Reported by IHS Area Officials
subsections: section_title: Reasons why some IHS-funded
section_title: Appendix II: Comments from the Indian Health Service
section_title: Appendix III: GAO Contact and Staff Acknowledgments
subsections: section_title: GAO Contact
section_title: Acknowledgments
paragraphs: 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.
section_title: Related GAO Products
paragraphs: 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.