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The Rationing of Healthcare and Health Disparity for the American Indians/Alaska Natives Jennie R. Joe, Ph.D., M.P.H.1 Native American Research and Training Center University of Arizona At a recent meeting held to examine health disparities for American Indians and Alaska Natives, Dr. Nathan Stinson, the deputy assistant secretary for Minority Health, recalled how proud he was of himself when as a resident he was able to see eight patients in a day. But when he joined the federal Indian Health Service (IHS), he found it daunting that he could only see, in one day, 75 of 100 Navajo patients. Dr. Stinson lamented: I didnât allow people to have more than one problem . . . and when I walked away, I didnât feel Iâd done a very good job; I didnât give the best care I could, I didnât speak the language, I didnât have the best facilities, and I turned away people (Albuquerque Journal, 2001). The History of Health Disparities Among American Indians/Alaska Natives Health disparity has long haunted the lives of American Indians and Alaska Natives, beginning with the European contact and continuing over the next four centuries as tribe after tribe was either completely decimated or severely depopulated by waves of communicable diseases and by warfare. Although the types and severity of these health dispari- ties have changed over time, some diseases continued to have an impact on the surviving tribes after they were removed and resettled on federal reservations. 1 The author would like to acknowledge the assistance of Jacquetta Swift, M.A., and Rob- ert S. Young, Ph.D. 528
529 RATIONING OF HEALTHCARE AND HEALTH DISPARITY Today there are slightly over two million self-identified American In- dians and Alaska Natives in the United States. While a majority live in the western states, only 38 percent continue to reside on federal trust lands; the rest now reside predominantly in off-reservation or urban communi- ties. Substantial numbers among the latter are descendants of families that were first relocated to the cities by the federal government in the 1950s with promises of a better life and greater economic opportunities. While most American Indians and Alaska Natives who moved to the cities traded one form of poverty for another, most agree that poor economic conditions on many reservations keep them in the cities. Evidence-based documentation on the extent or types of health dis- parities for all 500+ tribes and villages nationwide remains elusive, as is information on the quality of healthcare provided to this population. Gen- eral information, however, is available about some factors that contribute to health disparities for American Indians and Alaska Natives, and this information includes a number of geographic, cultural, education, and financial barriers to adequate healthcare. Some information, for example, indicates that a majority of American Indians/Alaska Natives have fewer years of education and are three times more likely to live in poverty and be uninsured than the U.S. general population (The Henry J. Kaiser Family Foundation, 1997). The lack of health coverage was also underscored by researchers ex- amining medical care expenditures. They found that only one in three American Indians/Alaska Natives interviewed had private health insur- ance, compared with 80 percent of whites, 52 percent of African Ameri- cans, and 50 percent of Hispanics (Braden and Beauregard, 1993). Many of those uninsured reported that they depended solely on IHS for their healthcare. Unlike other minority populations in the United States, the federal government has historically had a central role in healthcare delivery for American Indians/Alaska Natives. Currently, IHS reports a service popu- lation of approximately 1.51 million (IHS, 1998, 1999a). The users of IHS services comprise a population that is young, with a median age of 24.2 compared with 32.9 years for the U.S., all races. Despite the young popu- lation, the mortality picture for American Indians/Alaska Natives often indicates diseases experienced by an older population. For instance, the two leading causes of death for American Indian/Alaska Native women are diseases of the heart and cancer; the two leading causes of death for men are diseases of the heart and accidents (IHS, 1998, 1999a). Health disparities for American Indians/Alaska Natives are also re- flected in an array of other mortality and morbidity statistics. For example, the most recent data (1994-1996) indicate the following causes of age- adjusted death rates for American Indians/Alaska Natives that are greater
530 UNEQUAL TREATMENT than for the U.S., all races: 1) alcoholismâ627 percent; 2) tuberculosisâ 533 percent; 3) diabetes mellitusâ249 percent; 4) accidentsâ204 percent; 5) suicideâ72 percent; 6) pneumonia and influenzaâ71 percent; and 7) homicideâ63 percent (IHS, 1998, 1999b:6). While cancer incidences are lower among American Indians/Alaska Natives, five-year survival rates are significantly lower, in part because of stage at diagnosis and problems with access to follow-up care. In 2000, Dr. Michael Trujillo, the director of the IHS, attributed health disparities for American Indians/Alaska Natives to a number of underly- ing causes, including social and cultural disruption of tribal societies, poor education, longstanding poverty, lack of political presence, limited access to health services, and a widening gap in healthcare spending (Trujillo, 2000). The spending gap for healthcare is especially telling when the IHS per capita spending for healthcare is compared with other federal pro- grams. The IHS2 annual per capita healthcare spending at $1,430 is less than one-half that for the general U.S. population ($3,766). This IHS per capita spending is also substantially lower than that for Medicare ($3,369); Bureau of Prisons ($3,489); and Veteransâ Administration ($5,458) (FCNL, 2000). Moreover, when the per capita figures are adjusted for rates of in- flation, the per capita spending for Indian health in real dollars is lower than it was in 1977 (FCNL, 2000). The role of the federal government in the healthcare of American In- dians and Alaska Natives is rooted in history, in federal statutes, and in various treaties negotiated with tribes prior to 1871 (AILTP, 1988). Trea- ties between the U.S. government and the tribes, for example, often in- cluded modest provisions for a hospital, a physician, medical supplies, and furnished housing for the physician. Other than allocation of funds to fulfill specific treaty obligations with select tribes, Congress did not ap- propriate funds for a health program for all American Indians and Alaska Natives until 1832. It was then that monies were allocated for a smallpox vaccination program for tribes deemed friendly to the United States and/ or for individuals who, if they contracted smallpox, would pose a health threat to non-Indians in or near various military outposts (Stern and Stern, 1945). Other similar one-time congressional appropriations for specific health problems dot the history of Indian/federal relationship, but con- cern over poor health conditions was not a major issue for staff employed in the Office of Indian Affairs in the U.S. Department of War, an agency preoccupied with other priorities. In 1849, the Office of Indian Affairs was transferred from the War Department to the newly established Department of Interior, where peri- 2The Level-of-Need Funding for IHS is estimated at $15 billion. The fiscal year 2000 fund- ing level for IHS was approximately $2.4 billion (FCNL, 2000:2).
531 RATIONING OF HEALTHCARE AND HEALTH DISPARITY odic reports by the staff mentioned unhealthy conditions on many reser- vations, but these problems were not addressed, due to lack of authoriza- tion and funding. The harsh living conditions on Indian Reservations, however, continued to exacerbate the declining health status of the popu- lation, fueled directly and indirectly by inadequate nutrition, unsanitary conditions, substandard housing, and lack of healthcare. When these dev- astating health conditions could no longer be ignored, the Secretary of Interior commissioned a study to determine the status of tribes across the country. The Meriam Report, published in 1928, documented the extreme poverty and hardships faced by tribes and issued a number of recommen- dations (Meriam, 1928). Unfortunately, the efforts initiated to correct some of these problems were abruptly halted at the onset of WWII and were never aggressively resumed. The health conditions on most reservations therefore remained de- plorable and periodically rekindled concerns of advocates who lobbied for federal action (Trennert, 1998). In 1954, Congress reacted by transfer- ring the health responsibility from the Bureau of Indian Affairs (BIA) in the Department of Interior to the U.S. Public Health Service (PHS), an agency within what was then called the Department of Health, Education, and Welfare.3 The transfer resulted in additional resources for IHS and provided an opportunity for many subsequent IHS providers to enlist in the PHS Commission Corp with all its military privileges and rank. For American Indians and Alaska Natives, the War on Poverty in the 1960s served as the key staging ground for their quest for self-determina- tion and self-governance. With direct funding from the Office of Economic Opportunity (OEO), some tribes were able to initiate community-con- trolled health and education programs, although most were on a small scale. The success helped mobilize tribal communities across the country to advocate for more local control and for a more active role in the federal programs serving their communities. The mobilization helped build a political voice in the Indian health arena, including fostering a number of national organizations that focused primarily on health, such as the Na- tional Indian Health Board. The chair of this national organization, Sally Smith, an Alaska Native, recently reminded members of the Senate In- dian Affairs Committee that: For American Indian and Alaska Native people, the federal responsibility to provide health services represents a âpre-paidâ entitlement, paid for by the ces- sion of over 400 million acres of land to the United States. In many of the treaties which were negotiated between Tribes and the U.S. government, specific provi- sions for basic healthcare, such as the services of a physician and the construc- tion and maintenance of hospitals and schools were included (FCNL, 2000). 3 Now known as Department of Health and Human Services (DHHS).
532 UNEQUAL TREATMENT In contrast to the conviction shared by many tribal leaders, the federal government has maintained that federal support for health services for American Indians/Alaska Natives is not an entitlement but is voluntary (or discretionary). The government argues that health service is not man- dated under the federal governmentâs trust responsibility to the tribes and that funds appropriated for Indian health are public monies and not treaty or tribal money (OTA, 1986). The federal government, however, also ac- knowledges that the courts have relied on trust responsibility to construe treaties or statutes in favor of tribes and that the Supreme Court has ruled that special programs for American Indians and Alaska Natives are not racial in nature, but are based on a unique political relationship between Indian tribes and the federal government (OTA, 1986). Although the health services are not considered racially based, there are strict eligibility requirements for those who access the Indian Health Service. The general definition of who is eligible includes a number of criteria, not least of which is the requirement that the individual be of Indian descent, be regarded as a tribal member by his or her tribe, has some legal evidence of tribal enrollment or a Certificate of Indian Blood, resides on or near his or her federal reservation, and/or meets other local requirements (OTA, 1986). Generally, those who meet these eligibility re- quirements are not subjected to an economic means test in order to re- ceive service, although most American Indians/Alaska Natives served by the federal IHS or tribal health programs are three times more likely to live in poverty than other Americans (The Henry J. Kaiser Family Foun- dation, 1997). Because federal funding for Indian healthcare has historically been discretionary, improvement in healthcare resources for American Indi- ans/Alaska Natives has continued to be piecemeal and void of consistent longrange planning. Even when Congress passed the Snyder Act in 1921 (the first legislation to recognize a need to provide some ongoing federal healthcare resource), the language remained broad and vagueâfor the ârelief of distress and conservation of health and for the employment of physiciansâ (OTA, 1986). The Act did not encourage long-term planning, nor did it provide resources based on need, but it did establish an annual discretionary appropriation. The appropriation, which has fluctuated an- nually since the 1920s, has also produced a rationed healthcare system that continues today. In an attempt to understand the piecemeal approach, one former BIA employee posited that the vague federal commitments were most likely influenced by the prevailing attitude of the 19th century that American Indians and Alaska Natives would eventually vanish or disappear into the American mainstream as they became âcivilizedâ and assimilated. Ei- ther outcome promised to help relieve the federal government of its trust
533 RATIONING OF HEALTHCARE AND HEALTH DISPARITY responsibility and/or its involvement in the âIndianâ business (McNickle, 1973). The circumstances of dire health and poverty faced by most tribal communities, however, overshadowed any large-scale motivation for as- similation. Infectious diseases and poor sanitation continued to plague the communities, although a number of these diseases and health condi- tions such as tuberculosis and trachoma were targets of special govern- mental interventions at various times. The special interventions, however, left other dismal health conditions unchecked (Trennert, 1998). For ex- ample, the maternal mortality rate for American Indians/Alaska Natives hovered near 82.6/100,000 live births between 1955 and 1982, a rate that was nearly three times that for other women in the United States. This rate declined significantly by 1991, but still remained higher than the U.S. all races rate (The Henry J. Kaiser Family Foundation, 1997:5). Few would question the fact that mortality and morbidity statistics declined after the transfer of the IHS to the US Public Health Service. This has been credited to aggressive public health programs that pro- moted immunizations and improved sanitation, as well as to other de- velopments such as the introduction and use of antibiotics and the in- creased health resources and manpower brought about by improved funding (Rhoades et al., 1987). An 82 percent decrease in infant and ma- ternal mortality by the 1980s has been used to underscore these two im- provements (Rhoades et al., 1987). Other observers of Indian health sta- tus, however, attributed the improvements to a national trend (Kunitz, 1983; Kunitz, 1996). Following the Snyder Act, the next major legislative milestone aimed at addressing health disparities for American Indians and Alaska Natives was vested in the passage of the Indian Health Improvement Act in 1976 (re- authorized and amended since its passage). The intent of the statute was clear on two points: a) Federal health services to maintain and improve the health of Indi- ans are consonant with and required by the federal governmentâs histori- cal and unique legal relationship with, and resulting responsibility to, the American Indian people, and b) A major national goal of the United States is to provide the quan- tity and quality of health services which would permit the health status of Indians to be raised to the highest possible level and to encourage the maximum participation of Indians in the planning and management of those services (Bergman et al., 1999:591). This legislative action provided much needed funding by: 1) improv- ing health services; 2) improving the health infrastructure; 3) providing
534 UNEQUAL TREATMENT scholarships to train more American Indian/Alaska Native healthcare providers; 4) allowing for Medicare and Medicaid reimbursements to IHS or to tribal health programs; and 5) formally recognizing the healthcare needs of tribal members living in off-reservation or urban areas (OTA, 1986). The Act also called for maximum participation of Indians in the plan- ning and management of healthcare services, reinforcing an earlier stat- ute: the Indian Self-Determination and Education and Assistance Act of 1975. The Indian Self-Determination Act and its subsequent amendments have allowed tribes to take over all or partial management of Indian programs operated by the federal government under two alternativesâcontracting or compacting. Under the former, tribes can negotiate to take over and manage existing programs without making substantial programmatic changes. Compacting, however, gives tribes more flexibility in re-priori- tizing or changing the program to meet what they perceive to be the most urgent healthcare needs in their communities. Changes in the Healthcare Arena The passage and the results of these two pieces of legislation have substantially decreased the role of IHS as more and more tribes assumed the management and delivery of direct healthcare. At the present time, the tribes manage 13 hospitals, 158 outpatient health centers, 158 village clinics in Alaska, 76 health stations, and five school health programs (http://info.ihs.gov). According to the National Indian Health Board, the redistribution of healthcare management has been primarily in compact- ing. The Board reported in 1999 the following percentages under the three types of healthcare management: 45% compact, 30% under contract, and 25% IHS. In addition, the Board predicted that these percentages in the next six years would further decrease the role of IHS, and they predicted the following breakdown by percentage: 56% compact, 38% contract, and 6% IHS (NIHB Reporter, 1999). Currently, IHS continues to operate approximately 36 hospitals, 63 health centers, 44 health stations, and five school health programs nation- wide (http://info.ihs.gov). With the exception of three large hospitals (the Alaska Native Medical Center4 in Anchorage, Alaska; the Gallup Indian Medical Center in Gallup, New Mexico; and the Phoenix Indian Medical Center in Phoenix, Arizona), other hospitals throughout the country have 4 The Alaska Native Tribal Health Consortium assumed management of the Alaska Na- tive Medical Center in 1999. The 150-bed hospital serves as the key hospital for the statewide network of 15 rural native health facilities serving over 200 tribes.
535 RATIONING OF HEALTHCARE AND HEALTH DISPARITY less than 50 beds and most do not provide surgical or obstetric services. Other services offered by IHS, albeit on a decreasing scale include public nursing, a public health sanitation program, environmental health, dental and optometry services, etc. Although the passage of the Indian Healthcare Improvement Act permit- ted some federal support for urban-based Indian health programs, most of these clinics were previously created as not-for-profit storefront urban clinics. The clinics survived on donated medical equipment, supplies, and volunteers until eventually some became more firmly established and managed to secure funding from a variety of sources (Grossman et al., 1994). One funding resource was made possible by the passage of the In- dian Healthcare Improvement Act. Today, approximately 36 urban Indian health programs in over 40 locations nationwide are now partially sup- ported by IHS (IHS, 1998, 1999a). The types of healthcare services pro- vided by the urban clinics differ from location to location. Some offer only referral services, while others operate comprehensive outpatient clinics that may include dental care, mental health services, substance abuse treatment programs, etc. (Namias, 2000; OTA, 1986). The current users of these urban clinics continue to be families or individuals who are on public assistance or who are either unemployed or are employed in low wage jobs that do not include health benefits. Currently, as increasing numbers of American Indian/Alaska Native health programs come under the management of tribes or native organi- zations, there is some fear that the decentralization of IHS will eventually benefit only those tribal communities or organizations able to garner ad- ditional resources needed to augment the dwindling federal health dol- lars. One Indian physician noted âthat unless there is continuing congres- sional and political support, the realization of self-determination by tribes may make it easy for the federal government to terminate its federal re- sponsibilityâ (Bergman et al., 1999:601). Whether they live in urban or rural communities, healthcare ser- vices for American Indians and Alaska Natives eligible for Medicare or Medicaid are another new problem for IHS and for other health pro- grams intended to serve Indians. In a number of places, IHS, tribal, and urban programs find themselves in competition with Managed Care Organizations (MCOs) for American Indian/Alaska Native ben- eficiaries. While space does not permit lengthy discussion about the challenges MCOs pose for Indian health programs, it is worth noting that the growing competition may force changes in the future, such as capitated fees or other payment arrangements (The Henry J. Kaiser Family Foundation, 1997:13).
536 UNEQUAL TREATMENT Healthcare Dollars Over the decades, the existing healthcare system, whether managed by IHS, tribes, or urban programs, has had to broaden its base of financial support in order to respond to the needs of the growing population of American Indians and Alaska Natives. Financing and paying for patient care by private or non-IHS or non-tribal facilities or providers is partially possible with funds allocated under Contract Health Service (CHS).5 De- spite periodic increased funding, however, CHS dollars are generally de- pleted by IHS and tribal providers before the end of the fiscal year (The Henry J. Kaiser Family Foundation, 1997). Although they provide service to American Indians/Alaska Natives, most urban programs do not receive CHS funding. All three types of providers (IHS, tribal, and urban), however, are able to tap Medicaid and Medicare. In 2000, Congress enacted a bill allow- ing these entities to bill directly for services provided to Medicaid and Medicare beneficiaries after a few demonstration sites documented that it improved cost recovery and lessened the bureaucracy. In the 1990s, IHS, tribal, and urban-based programs also won the right to be included with other Federally Qualified Health Centers, a designation that enabled them to bill Medicare and Medicaid for actual and not fixed fees (The Henry J. Kaiser Family Foundation, 1997). Access to Medicaid remains a problem for tribal members at many other places, including the cities. As part of her testimony before the Sen- ate Select Committee, Barbara Namias, the president of the National Council of Urban Indian Health, recently recounted the barriers in access- ing Medicaid faced by people who live in the city. Some of these barriers include applicantsâ inability to understand the Medicaid application pro- cess, lack of required documents such as a driverâs license (especially if the person does not own a vehicle), and/or being denied Medicaid be- cause the applicant is unable to verify a current address (Namias, 2000:19). She noted that many of these applicants remain highly mobile, frequently in search of affordable housing. Namias also informed the Committee that securing Medicaid coverage in urban communities does not guarantee access to medical service, as many providers refuse to accept Medicaid patients. The underutilization of Medicaid by American Indians and Alaska Natives has been documented elsewhere. For example, although not all states collect or report Medicaid participants by race, statistics from a 1995 report by the Health Care Financing Administration (HCFA) found that 5In Fiscal Year 1997, $133.4 million was allocated for CHS, with 18% of that earmarked for tribes who contract or compact their healthcare (Schneider and Martinez, 1997:3).
537 RATIONING OF HEALTHCARE AND HEALTH DISPARITY American Indians/Alaska Natives were least likely of all racial groups to access Medicaidâonly 65% of eligible Indians have Medicaid coverage compared with 82% for African Americans, 83% for Asians and Pacific Islanders, and 91% for Hispanics (HCFA, 1995). The participation of American Indians/Alaska Natives in Medicare also has its share of problems. The National Indian Council on Aging (NICOA) reported that out of 112,588 American Indians/Alaska Native Medicare beneficiaries in a study they conducted by linking and match- ing IHS identifiers with Medicare recipients, 85% were racially mis- classified (NICOA, nd:4). The Tribal/Consumer Perspective Although cautious and concerned about both the possible impacts of MCOs and the threats to self-governance, most tribal health leaders, American Indian/Alaska Native health professionals, and the leadership of the urban and village-based health programs are not pessimistic. A study reported by the National Indian Health Board in 1999 found that a majority of the 210 tribes and health organizations they surveyed support local control of health services and self-determination. In addition, many articulated a number of health improvements they had been able to ac- complish under self-governance, including the fact they were able to re- spond to local needs and to find various resources to expand their health services to meet those needs (NIHB Reporter, 1999). Others interpreted this model of health delivery as essential to improving quality of health services, in that they are able to re-focus on disease prevention and/or provide culturally relevant options, such as the inclusion of traditional tribal healing resources. Those surveyed also expressed a need for more research on the effects of tribal health management on Indian health, while others wanted more political action to ensure future protection of tribal sovereignty (NIHB Reporter, 1999). Dwindling funding resources or insufficient funding were also common problems shared by many of those who participated in the NIHB survey. Some of the consequences of insufficient funding included problems such as the inability of the programs to offer competi- tive salaries and benefits to health professionals (The Henry J. Kaiser Fam- ily Foundation, 1997; NIHB Reporter, 1999). The increased local control also appears to satisfy many consumers of these health services, although there are few published reports about con- sumer satisfaction with Indian healthcare other than those available from focus groups or other anecdotal sources. One preliminary study con- ducted in the early 1970s found that people with more schooling tended to express greater satisfaction with the healthcare they received at IHS
538 UNEQUAL TREATMENT facilities than those with less schooling. The latter often experienced more dissatisfaction, some of it due to language differences, high provider turn- over, and cultural insensitivity. Some consumers attributed cultural in- sensitivity to the lack of adequate ongoing or systematic orientation for the ever-changing cadre of providers (Kekahbah and Wood, 1972). In a recent focus group conducted in Albuquerque, New Mexico, American Indian consumers echoed some of the same issues raised by consumers in the 1970s, but a number of these participants also voiced a greater appreciation for the cultural understanding and non-discrimina- tory healthcare provided them by IHS or tribal health programs. There was even a strong vote of confidence for IHS providers when one partici- pant remarked: âIâm happy with IHS. Iâve got Medicaid for my children. Iâm happy with the doctors that my children see there. The only one that gives me a hard time is that receptionistâ (Grady and Edgar, 2001). The Albuquerque group directed much of its dissatisfaction and concern over cultural insensitivity and discriminatory behavior at healthcare providers from the private sector rather than at IHS or tribal providers. When dis- cussing the lack of understanding of traditional tribal healing by provid- ers outside IHS and/or tribal health programs, one participant added that she would like these providers to also âunderstand how traditional medi- cine can lead to healing [for] the [Indian] patientâ (Grady and Edgar, 2001). While most IHS providers understand and/or are aware of the tradi- tional tribal healing practices, most providers in the private sector are less likely to know about these practices or their value for Indian patients fac- ing serious health problems. IHS facilities and its leadership in many communities have always allowed patients and their families either time or a place (in the clinical setting) to consult with tribal healers or practitio- ners. The services provided by most of these tribal healers or practitioners are seen as complementing modern medicine and provides a source of spiritual help for many patients. The role of traditional tribal healers is more widely accepted and uti- lized now, especially as tribal health programs attempt to address health problems such as diabetes and other conditions that cannot easily be remedied by modern medicine (Joe, 1994). The role of traditional tribal healing is especially important in health promotion because the concept of health for most tribes is wellness centered, enforced by social rules of behavior and taboos intended to help prevent illness or misfortune. Use of traditional tribal healing and its practitioners, however, was not always accepted by non-Indian healthcare providers. In fact, some healing prac- tices were outlawed by the federal government in the late-nineteenth century at the urging of missionaries who deemed such practices as
539 RATIONING OF HEALTHCARE AND HEALTH DISPARITY barbaric and un-Christian. It was not until the mid-1930s that ceremonies such as the Sun Dance could be conducted without fear of reprisal. One other notable difference between consumers surveyed in the 1970s and those who participated in the recent Albuquerque focus group is the difficulties with healthcare financing. The delays and frustrations experienced by consumers were frequently mentioned by participants in the Albuquerque focus group, especially the delays due to limited Con- tract Health Service (CHS) resources and/or the reluctance of Medicaid to assume fiscal responsibility for Indian patients (Grady and Edgar, 2001: 176). Consumers who have either private insurance or Medicare seemed to have fewer difficulties in accessing healthcare in New Mexico. The Interviews In the present study, we sought to qualitatively assess current think- ing from a cross-section of tribal health leaders, consumers, healthcare providers, and urban healthcare administrators on such topics as health disparities, quality of healthcare, healthcare financing, local management of healthcare, and issues of discrimination. To accomplish this, we con- ducted approximately 22 telephone interviews (including one telephone conference call with 7 providers) over approximately 21/2 months, between late June and early September 2001. Initially, a list of approximately 25 potential interviewees was de- veloped in consultation with a number of sources. Each potential inter- viewee was contacted by telephone, by email, or by letter. The invitation included a cover letter with a brief description of the study as well as a list of proposed questions, which were also developed in consultation with several healthcare providers. The 22 participants represented IHS (12), tribal and urban health programs (8), and tribal leaders (2). The following sections contain the questions and the responses obtained from the interviews. Do Tribal Communities Receive or Not Receive Quality Healthcare? The responses to the first part of the question were mixed. Some par- ticipants indicated that tribal members were receiving quality care but qualified their responses by saying that while this was true in their own facilities, they did not think patients received quality care when referred to providers in the private sector (non-tribal or non-IHS facilities). Al- though they were not asked to discuss how quality care was determined, some of the interviewees referenced certain criteria they used to make this judgement. For example:
540 UNEQUAL TREATMENT [Retired CEO for Regional Health Organization]: I would say yes, but ser- vices are not always accessible. Some of our villages are comprised [sic] of islands with no road connections, and healthcare providers have to fly in to give care (EL 10/4/01). [Provider]: I have two part answers for this question. The first part is yes, I believe overall that tribal members in our area are receiving quality care given our limited resources. The second part is I do not believe tribal members are getting good preventive services, and the limited CHS (Contract Health Service) dollars prevents many from getting needed care (JY 6/22/01). [Tribal leader/consumer]: It seems persons with chronic health problems like diabetes probably get quality care. Those with acute or emergency problems are often taken to non-IHS facilities, and they are less likely to get quality care (JR 6/24/01). [Provider]: Our ability to provide quality or preventive care is hampered by not having legislative authority. For example, CMS [Center for Medicaid and Medi- care Services, formerly HCFA) is able to negotiate or set rates for medical ser- vices they purchase for the poor or the elderly (JY 6/22/01). As noted above, providers generally reported that their tribally man- aged, community controlled, or IHS health facilities provided quality care, despite limited funding. Others identified ways they try to maintain qual- ity care, such as retaining providers who provide quality care. In one tribal community, for example, a tribal leader reported that her tribe was able to retain providers by supplementing their salaries with income from the tribeâs gaming operation. Others point to various facility accreditations (e.g., JCAHO) as their evidence of providing quality care. Only one re- spondent indicated that her local program conducted on-going consumer satisfaction surveys to gauge the communityâs satisfaction with the health- care services provided. She reported that so far consumer satisfaction has remained high, although she did not elaborate on types of questions asked and/or how frequently the surveys were conducted. There were a number of significant responses about barriers to the delivery of quality healthcare. Funding limitations and under-funding that has forced rationing of healthcare were the most frequently men- tioned barriers. It should be noted, however, that while fiscal handicaps are well known to the providers and program administrators, consumers appear to have difficulty understanding why some people are denied ser- vices or why some patients experience lengthy delays before they get approval to be seen by specialists or to receive diagnostic services. For example, one mother who participated in the focus group held in Albu- querque, New Mexico, remarked: Right now Iâm having a lot of trouble with Medicaid and the Indian Hospital fighting with each other [over] whoâs going to pay. They [Indian Hospital] donât
541 RATIONING OF HEALTHCARE AND HEALTH DISPARITY want to pay because they think Medicaid should pay. Medicaid donât want to pay because they think PHS [IHS] should pay. Like I said, in the meantime my little girl has to wait until they make up their mind, and this takes months and months (Grady and Edgar, 2001:185). This mother added that she has no choice but to wait, because she has no other alternative. Both consumers and providers express frustration over their rationing of medical care. One IHS health program administra- tor noted: âWe are rationing healthcare, and depending on what medical services are needed, some individuals might not be able to receive the type of care needed directly in our facilitiesâ (JY 8/31/01). Another provider stated that unlike other large federal health pro- grams, healthcare rationing is necessary because the federal Indian health appropriation is not based on need. He said that other major federal health providers of entitlement programs have more budget flexibility and pur- chasing power. IHS, he notes, does not have similar legislative authority or other provisions that would give the agency the purchasing power to negotiate a reasonable price for pharmacy products and to establish set rates with the private sector for medical services purchased for Indian patients. It is not surprising that concerns about limited resources and the ra- tioning of healthcare loom large. A number of the respondents spoke to the fact that the IHS funding level is only at 60 percent, a continuing situ- ation that has forced the agency to limit or dispense with a number of valuable public health programs in order to sustain primary medical care services. The 60 percent funding level has also been affected by the in- creasing number of contracts or compacts that IHS has had to fund. Ac- cording to some providers, this diminishing role of IHS has had a nega- tive impact on staff morale and increased the uncertainty about future employment among the remaining cadre of IHS providers and its other federal employees. Most providers also could not talk about rationing healthcare without referencing the severely underfunded Contract Health Service. While some reported that they are able to âstretchâ their CHS allocation by uti- lizing the Catastrophic Health Emergency Funds (CHEF),6 this option does not prevent most of them from exhausting both resources before the end of each fiscal year. The situation is more urgent, according to provid- ers and program administrators from Oklahoma, where CHS is the sole source for 11 of the 35 tribes that do not have clinics and therefore must rely on CHS dollars to pay for primary and emergency healthcare. 6In Fiscal Year 1997, Congress authorized $12 million for CHEF to supplement CHS.
542 UNEQUAL TREATMENT Elsewhere, the CHS dollars are reserved primarily for life-threatening emergencies that might involve automobile accidents or other major acci- dents or situations that may result in permanent disability or loss of a limb. Decisions as to who will receive CHS coverage are handled in a number of ways, depending on the location. Sometimes the decision is made administratively, but in other places, a committee of providers might meet weekly to make these decisions. One IHS health administra- tor who has responsibility for the CHS program in one IHS area in the Southwest commented that âone or two major automobile accidents can wipe out a CHS budget in one month,â and added: âCHS is expensive, and rationing care does not save the agency dollarsâ (JY 6/22/01). Along similar lines, IHS providers in Oklahoma noted that, âOnce CHEF is depleted, the local facility often has to decide if it can absorb a medical bill for $300,000â (9/4/01). In some cases, a critical diagnostic procedure such as an MRI is denied when CHS dollars are low, and the procedure may be delayed for as long as six months. According to one of the interviewees, the cost-cutting efforts have also resulted in the purchase of cheaper treatment alternatives. He notes: âSome Indian patients with cancer do not get aggressive treatment be- cause it may be too expensive, but have to settle for less aggressive treat- ments that may be less likely to be successfulâ (NC 6/12/01). Besides CHEF, tribes who have other resources also report other ways they try to supplement their CHS dollars. Tribes with gaming or other business enterprises, for example, encourage their employees to take ad- vantage of a tribal benefit package that includes health insurance. One physician who works with some of these tribes, however, reports that the need for CHS often exceeds these and other financial supplements. Some tribally managed health programs also report that they are forced to âstretchâ their CHS dollars by limiting eligibility to individuals who are members of their immediate tribe. Non-tribal members in these communities have to seek other resources, including care from an urban- based Indian health program. While the influx of reservation patients to urban programs has yet to be overwhelming, one urban Indian health program administrator stated: â. . . they [reservation patients] come with- out insurance, without Medicaid, or any other resources. We try to help them get enrolled in Medicaid, but it can be costly for our programs tooâ (RF 8/28/01). Access to CHS even during times of emergencies is not without prob- lems for the patients. For example, Indian patients who utilize a non-tribal or a non-IHS facility during a medical emergency have only 48 hours to notify their respective IHS facility and/or appropriate tribal health ad- ministrator to be considered for coverage under the CHS program. Those who fail to notify the appropriate facility are told they are personally re-
543 RATIONING OF HEALTHCARE AND HEALTH DISPARITY sponsible for any medical bills associated with the emergency care. More- over, it is not unusual for many of these non-IHS or non-tribal facilities to also deny services to Indian patients unless they receive prior authoriza- tion. Staff at one tribal program reported: A tribal member was referred from one of our tribal clinics to a non-Indian facility for diagnostic testing. He was kept waiting for hours when the referral facility demanded visible, not verbal, verification of coverage. When the referral facility finally got a copy of the written authorization, instead of examining the patient, the patient was told to schedule an appointment for another time (HN 9/3/01). Rationing healthcare and the restriction of CHS resources also affects non-tribal members, including those married into the tribe. For example, as one provider notes, if an Alaska Native woman is married to a member of a tribe in Southwest, the woman is eligible to receive basic health ser- vices at the local tribal or IHS facility. However, should she need care aside from pregnancy-related care provided by a non-tribal or non-IHS provider, âshe has to seek CHS coverage from her respective health facil- ity in Alaska, a situation that requires her to travel back to her home com- munity to be considered for CHS coverageâ (NC 6/12/01). In addition to rationing care, other factors also hamper the delivery of quality healthcare in many communities. A number of the interviewees reported that increasing numbers of tribal and IHS health programs have difficulty attracting and keeping good providers. One tribal leader indi- cated that her community would like to hire an American Indian physi- cian, but that they have not been able to recruit one. âThere are too few of them,â she adds (JY 6/24/01). In other areas of the country, access to health facilities remains a key problem. One provider remarked: âSixty percent of the Indian people in our geographic area live [far] away from Indian Health Service and tribal health program sites. . . . Transportation is a barrier and if people cannot access our services, we cannot count them as a part of our user popula- tion. . . . Our funding is based on user populationâ (KA 9/7/01). Has Compacting/Contracting Improved Quality of Care? While some of the problems delineated in the previous section re- main endemic, some interviewees saw quality healthcare improvement as tribes have assumed local control of health programs by contracting or compacting. For example, one IHS provider noted: My sense is that on balance, contracting and compacting has improved health- care services. In Alaska, where healthcare has been compacted for the last 4-5
544 UNEQUAL TREATMENT years, there are improvements in clinical care. If you walk into the Alaska Na- tive Medical Center today, you get treated today, whereas under the old system, sometimes it was a couple of weeks before you could get an appointment (NC 6/12/01). A director of one of the tribal health programs also reported positive trends under compacting. She noted that they have been able to build two new clinics and to increase the range of services offered by the tribal com- munities. Other tribal health program administrators also report that re- cent policy changes that allowed for indirect costs have strengthened their local health program infrastructures. Another tribal health provider who agrees that quality of care has improved added that compacting has also helped improve continuity of care. This individual thought that tribally managed health facilities are more responsive to local needs. These non-federal facilities, he added, are also free to keep or let go of employees who are not delivering quality care. Another provider cautioned that not all tribally managed programs have been progressive. He thought that how well a tribe managed its health programs was dependent on the stability of its political or other infrastructure such as its board of directors. He lamented that in some communities, after each new election, the health program focus may sud- denly take a new direction, a direction that may not necessarily result in positive outcomes. Another note of caution was voiced by one tribal leader whose com- munity was studying whether it will contract with IHS. She remarked: I am a [tribal] council member and donât know how I will vote [on contracting] until I have more information. We have recently contracted and took over some of the BIA functions, and itâs working fine. But it is one thing to run out money to buy salt for the road and another thing to ration healthcare because there is no money (JR 6/12/01). This council member concluded by saying that until she gets further assurances, she is still skeptical about the federal push to encourage tribes to take over management of the federal program. She said she feared that self-determination could be the beginning of termination7 or the end of federal obligations. Most interviewees agreed that the quality of healthcare is improving under local control, but most also noted that financial shortfalls plague all of these programs, forcing them to ration care. Most also agree that the quality of care received or not received by tribal members is influenced by 7Termination of the federal governmentâs trusteeship.
545 RATIONING OF HEALTHCARE AND HEALTH DISPARITY racial discrimination or the lack of cultural sensitivity, especially by providers or employees in the private sector. The next section highlights some of these observations made by interviewees during the telephone interviews. Does Discrimination Affect Quality of Care for Tribal Members? The responses to this question were varied, and the examples offered tended to be anecdotal. For example, one tribal leader said it was her ex- perience that when she and other tribal leaders lobby for increasing healthcare dollars for Indian health, some legislators fear that if they sup- port these efforts, their other constituents will think that Indians are get- ting something for nothing or that Indians will have a special advantage over other Americans. An urban health program director said that discrimination was a ma- jor problem in his state but is not being addressed, even by state leaders. He reported that there have been efforts by tribal leaders and others to have the state legislature examine discriminatory practices such as police profiling, but to no avail. Other observations offered by the interviewees tended to reflect expe- riences or examples that have happened at the local level: [Tribal leader]: Discrimination is a problem on two levelsâone is that a lot of our people donât have private insurance, except Medicare and Medicaid. Some- times there are different attitudes by university or private hospital staff towards these individuals because they have limited English-speaking skills or are timid. When clerical staff at these facilities do not get our people to answer fast, they can get nasty, rude, or become patronizing (MB 8/20/01). [IHS Health Administrator]: There are some biases, stigmatization, and stereo- typing that goes on, especially in the private sector. There is always an assump- tion made [by non-Indian providers] that any illness presented by an Indian patient is alcohol-related or other forms of substance abuse. Sometimes the ste- reotyping is further complicated by the fact that some Indian patients lack so- phistication in dealing with majority culture (JY 6/12/01). [Tribal leader/consumer]: Private hospitals tend to place Indian patients in char- ity rooms or cubicles in hospitals, rarely in a room with a window, with a private bath or nice surroundings. I have accused the hospital of placing our tribal mem- bers in these âIndian beds,â but they denied it. I know because my husband was hospitalized a number of times at this hospital, and he was always placed in one of these âIndian bedsâ (JR 6/24/01). [Tribal health staff]: Providers in the private sector sarcastically refer to our tribal health insurance program as âcasino insuranceâ and will frequently deny service to those on Medicaid or Medicare because they do not have âcasino
546 UNEQUAL TREATMENT insuranceâ .... Whether an Indian patient gets health service in the private sector is often dependent on stereotypical views held by these providers (HN 9/3/01). One of the staff members on the conference call went on to indicate that the ability to pay or the possession of a bonafide authorization does not always translate into quality care for Indian patients. Another tribal health program staff member elaborated: Even [our] tribal members with insurance do not receive quality care in the private sector because of cultural insensitivity and racism. If you look like an Indian, some facilities will not make you feel welcomed (HN 9/3/01). A majority of those interviewed indicated or provided examples per- haps indicating that Indian patients are more likely to experience discrimi- nation by providers or employees working in non-IHS or non-tribal health facilities. Comments by a number of the interviewees, however, did not distinguish between outright racial discrimination and situations where providers might refuse to treat all patients with Medicaid or Medicare insurance. One tribal leader, for example, defined a situation as discrimi- natory when a fellow tribal member referred for knee surgery was re- fused by a specialist because the tribal member was on Medicaid. Other examples were more specific and linked to racial discrimina- tion. For example, one provider in Oklahoma reported that compared to non-Indian clients, Indian clients placed in a nearby psychiatric facility under Emergency Detention Order either did not receive immediate evaluation or were not immediately transferred to an appropriate treat- ment facility. He reports that Indian clients are kept much longer in the locked facility before they are evaluated or are referred to other treatment facilities. Other examples also give glimpses of discriminatory action, at least from the view of the Indian patients. One longtime urban health program administrator reported that a considerable number of Indian patients they refer out to the private sector for specialty care or x-rays may not receive the service because the patients either do not feel welcomed or are treated with disrespect. He concluded that some patients are âtold directly they cannot be served, while others are kept waiting for so long that they get uncomfortable and just leaveâ (RF 8/28/01). Another IHS provider cited the results of a study that indicated a form of discrimination in providing treatment. The study examined the kinds of breast cancer treatments received by Indian women in one region of the Southwest. The study team found that compared with non-Indian women, Indian women are more likely to undergo a radical mastectomy rather
547 RATIONING OF HEALTHCARE AND HEALTH DISPARITY than breast conserving therapy, even for early stage cancer. As a clinician himself, he speculated that the surgeons might opt for mastectomy be- cause of a stereotypical view of Indiansâthat Indian women, who often live miles away from the treatment facilities, may be lost to follow-up because they likely will not return for the series of radiation or chemo- therapy treatments. The interviewee continued: I donât think itâs malicious or negative stereotyping, except in the sense that the surgeons donât quite trust the Indian patient to be as compulsive about follow- up as their non-Indian patients. They [surgeons] may be doing a disservice to a number of Indian patients who would be perfectly good at finding their way for follow-up (NC 6/12/01). Lack of cultural sensitivity or stereotyping has also been presented as another form of discrimination or as contributing factors to discrimina- tion. One provider, for example, notes such insensitivity has led to label- ing Indian patients as âdifficult,â especially when an Indian patient may want to withhold making an important health decision until theyâve con- sulted with family or kin. In contrast, noted the interviewee, âdecision- making about the treatment process by healthcare providers tended to be unilateral rather than bilateral.â He also noted that most non-Indian pa- tients tend to have more knowledge about their health problems than ex- pected and may, in many instances, already have decided on an expected course of treatment. A few of the respondents also mentioned that some Indian patients also want extra time to consult or to seek the services of their traditional tribal healers before consenting to a major treatment plan. The services of a traditional tribal healer, for example, may be sought by the patient and the patientâs family to help ensure a successful outcome of the treat- ment being proposed by physicians or specialists. Such requests are familiar and frequently honored by providers in IHS or tribal or urban based health programs, but are not familiar to providers in the private sector. Providers and administrators of the urban programs, however, find it difficult to provide patients in the cities with access to traditional tribal healers due to distance and differing intertribal needs for this service. Some of those interviewed also described ways they have attempted to address discrimination. One IHS director of a consortium of tribal health programs in the eastern United States reported that they constantly try to educate agencies or entities that deny services to Indian patients to teach them that as citizens of their respective states, Indians are eligible for state, county, or local health resources. He admitted, however, that the educational efforts are difficult because his organization has to work with
548 UNEQUAL TREATMENT 14 different eastern states and across four different federal regions (MT 8/ 31/01). Other tribal health program administrators said they attempt to lessen the blow of discriminatory practices by having Community Health Representatives (paraprofessionals) escort patients to non-tribal or non-IHS facilities. The escorts are asked to help with translation or to serve as patient advocates. In another region of the country, communi- ties were able to vote in a tribal member to the local non-Indian hospital board, and once on the hospital board, the representative (despite strong objection by fellow board members) was able to convince the hospital to hire tribal persons to help coordinate care for Indian patients referred to that hospital. What Is Being Done to Address Health Disparity? The bottom line about health services for American Indians/Alaska Natives, according to one provider, is that most of the health programs do not have adequate funding or resources to reduce health disparities. One noted exception mentioned by a number of individuals interviewed has been the recent special congressional five-year diabetes prevention initia- tive that has funded a number of communities to initiate diabetes preven- tion programs. IHS providers also recount a few longstanding efforts to address health disparities, such as their ongoing aggressive immunization pro- grams, efforts to improve sanitation and water supply for tribal commu- nities, improvement in standards of care for clinical patients through chart audits, and increased screening for a number of preventable mortalities, such as diabetes, cancer, heart disease, etc. Tribally managed programs that are able to tap into other resources also mentioned a number of programs that they have initiated, such as wellness programs, adolescent treatment programs, substance abuse treat- ment, integration of traditional tribal healing practices, and disease pre- vention programs. In general, most agreed that closing the gap on health disparities for this population would require a national and federal recommitment, es- pecially in the form of increased federal funding that would allow pa- tients to have access to specialty care. There was also consensus that there should be renewed interest and resources for disease prevention, devel- opment of culturally relevant interventions (such as inclusion of tradi- tional tribal health resources), more resources to conduct meaningful health research, and diversifying avenues that will allow more American Indians/Alaska Natives to enter health professions.
549 RATIONING OF HEALTHCARE AND HEALTH DISPARITY Summary Unlike other racial or ethnic minority groups, the federal government (through IHS) is responsible for delivery of health services to federally recognized American Indians and Alaska Natives through IHS, tribal, and urban-based Indian programs. For several decades, the goal of the federal government has been to raise the health of this population to the highest level in order to lessen the gap of health disparities. The road taken by tribes and the IHS to accomplish this goal continues to be fraught with difficulties and detours. The difficulties in closing the gap of health disparities continues to be underscored by a number of indicators, including mortality statistics for specific diseases that significantly exceed those in the majority culture. Numerous factors have been identified as contributing to these dispari- ties, including, but not limited to, poverty, access to healthcare, years of neglect, diminishing resources for disease prevention, longstanding so- cial and cultural disruptions, and a widening gap in healthcare spending that forces rationing of healthcare. The gap in healthcare spending is es- pecially significant when the annual per capita spending for Indian health is less than half that per capita for the nationâ$1,430 compared to $3,766, respectively. The inadequate funding of CHS and CHEF contributes to the most severe form of healthcare rationing. This funding gap results in delaying treatment or diagnosis, compelling patients to accept cheaper and less effective treatment interventions, to go without treatment, and/or to be denied services. Moreover, some patients are unable to receive timely care due to jurisdictional and bureaucratic disputes over which agency is the first party payer. Racial discrimination and stereotyping of Indian patients, especially by providers in the private sector, is commonplace. Its consequences have left patients without care, with inadequate care, or in some instances, with inappropriate care, such as radical mastectomy for early stage cancers. Lack of adequate funding ripples into all aspects of the healthcare delivery systems, which has affected the ability of the Indian health pro- grams to recruit and hire staff, to commit to long-range health planning, to target resources for prevention and research, and to ensure culturally appropriate healthcare. Tribal and urban-based Indian health programs have developed strategies to off-set the ever growing financial hardships, but they, along with IHS, are now facing other new challenges, such as managed care.
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