ALASKA NATIVE PHYSICAL HEALTH
Report of the Health Task Force
|History and Structure||5|
|History of Alaska Native Health and Health Care||6|
|Behavioral Underpinnings and Other Related Factors||8|
|Changes in Public Health for Natives in the 1970s||9|
|Indicators of Current Alaska Native Health Problems||12|
|Physical and Behavioral Health Indicators||20|
|A Summary of the Data||34|
|Population Growth: Alaska Natives in the Year 2000||35|
|Problems in the System||36|
|Confronting Hard Choices: Discussion & Recommendations||39|
|A Communal Problem: A Community-oriented Response||39|
|Knowledge, Attitude and Behavior. Policy Implications||42|
I. History and Structure
By all accounts, the health of Alaska Natives is as poor as, if not worse than, the health of any other group in the United States, but many of the data that would normally be used in the health sciences to substantiate that perception are lacking. Neither the Indian Health Service nor the State of Alaska has gathered or maintained acceptable health needs assessment data in any systematic fashion, and with the exception of a few research studies, the information regarding the state of health of Alaska Natives derives from workload and patient encounter data. Thus, only those who have passed a threshold of some sort and chosen to enter the health care system are counted. Untold others go uncounted. Nonetheless, even in the absence of true health status data, information available from the treatment system show the poor health of the Native people of Alaska when compared to the same kinds of data for other segments of the United States population. These morbidity and mortality figures are presented later in this study.
With the substandard health status, however, comes the other conclusion that in general the situation has improved over the last several decades. Life expectancy for Alaska Natives has risen from 47 years in 1950 to 67 in 1980, marking a significant improvement. In 1950, numerous deaths were caused by measles, whooping cough, rheumatic fever, syphilis, typhoid, and polio; no deaths from these causes occurred from 1980 through 1989.1 Both the number of Alaska Natives and the costs of maintaining the health system to serve them have also increased: the Native population of Alaska rose from 35,000 in 1950 to 85,698 in 1990.2 The most recent complete-year figures show that for the 12-month period ending September 30, 1992, the amount spent by the Indian Health Service in Alaska was $222,462,237.3 To this sum must be added many state-supported services, Medicaid and Medicare reimbursements, and private third-party insurance reimbursements. The monetary aspects of Native health care are a secondary concern of this study, but they warrant considerable attention, given the enhanced importance of cost containment in the medical industry and new initiatives for health care reform.
The Alaska Natives Commission has chosen to focus its concerns on the areas of (a) environmental health; (b) mental health and substance abuse; and, (c) trends in general, physical health. These three primary topics are discussed in this section. Additionally, there are issues related to the allocation of funds, the orientation of both the Indian Health Service and the Alaska Department of Health and Social Services, the need for better data, and changes in the Native lifestyle and their related health consequences. As the data show, there have been substantial swings in the kinds of health problems that Natives present to the health care system of Alaska. Whereas several decades ago the primary problems were due to infectious disease, the primary problems today are due to poor health habits and their consequences, including the high, sad rate of suicide and accidental death. Alcohol abuse and alcoholism are also prevalent in Alaska Native society today.
This study begins with a brief historical perspective of Alaska Native health and the health care system that has been established over the years to provide treatment and rehabilitative services to Alaska Natives. The many problems and issues that are caused by the rural, isolated living habits of many Alaska Natives are, at times, inseparable from other issues, but there are some clear cases in which Native-specific problems do occur as separate from rural Alaska problems. A case in point, "baby bottle tooth decay" is reviewed as exemplary of the underlying factors that are or at least may be involved in some of the new health problems facing Alaska's Native people.
B. History of Alaska Native Health and Health Care
1. Pre-1741 Health Care
Prior to the arrival of Europeans (later EuroAmericans) in Alaska in 1741, Alaska Natives practiced a variety of health care techniques. These varied by Native group, but held in common a close connection between spiritual and physical health.
Even with the variations, health techniques practiced by Alaska Natives prior to 1741 included medicinal remedies, surgery, thermal and massage therapy, and psychological or spiritual healing. Medicinal remedies included the use of plant and animal substances administered orally or applied to wounds or perceived sites of illnesses. Surgery included amputation, bleeding, cautery, dental extraction, removal of arrows and other wounding objects, "piercing" to allow bad humors to escape, and suturing of wounds. Thermal and massage therapy included treatments for internal ailments, joint pains, and skin diseases.4
2. Pre-1867 Health Care
EuroAmerican health care techniques brought to Alaska with the arrival of Russians and other Westerners after 1741 included many of the same techniques being practiced by Alaska Natives. The Western system, however, was more organized and technically advanced due to Western advantages in communication and technology.
That organization and advancement were initially of little use to Alaska Natives. Those qualities were far outweighed by the introduction of strange diseases to which Alaska Natives had not developed natural immunities. Respiratory illnesses, smallpox, syphilis, and tuberculosis were particularly virulent killers. In the early years of the Russian presence in Alaska, ships' surgeons and other medical personnel occasionally visiting the fur trading posts may have sometimes treated Alaska Natives. The Russians set up hospitals at Sitka, Kodiak, Unalaska, and Atka between 1817 and 1821 although a physician was not permanently assigned to the Russian American Company's establishment in Alaska until 1820.5
The first "public health" activities in Alaska probably occurred in response to a smallpox epidemic that ravaged Alaska Native settlements. In response to the epidemic, the Russian American Company inoculated some Russians and Natives in Alaska and continued the program as additional vaccine became available. A limited supply of vaccine, reluctance to accept inoculation, and a scattered population prevented the program from being fully effective. Although the first recorded case of smallpox in Alaska was noted in 1770, it was not until the mid-1830s that the disease became rampant. When that epidemic was over, between 20 percent to 66 percent of all the Natives in southern and western Alaska had died. Many of those who were left were easy prey for other infectious diseases.6
3. Post-1867 Health Care
Availability of Western medicine to Alaska Natives initially did not increase dramatically after the American purchase of Russian interests in Alaska in 1867. During the periods of Army (1867-1877) and Navy (1879-1884) administration of Alaska, service doctors in Southeast Alaska occasionally provided health care for Natives. Revenue Cutter Service medical officers on ships patrolling the Bering Sea consistently gave medical assistance when their vessels touched at Native villages in western and northern Alaska.7
Missionary medical personnel who began to arrive in Alaska in the 1870s also provided health care for Alaska Natives. The Episcopal Church opened the first of eight hospitals that treated predominately Native patients at Anvik in 1887. The Presbyterians Sheldon Jackson School in Sitka, serving a Native student body, established a hospital in 1892. Dr. Joseph H. Romig arrived at the Moravian mission at Bethel in 1896 and became western Alaskas first resident non-Native doctor.8
In the early 1900s, the Department of the Interiors Bureau of Education initiated efforts to improve health care for Alaska Natives. When the bureaus supply ship Boxer made supply runs in the summer, it carried doctors and nurses who held clinics wherever the ship anchored. Itinerant bureau doctors and nurses traveled by dog team to provide health care in the winter.9
Congress appropriated funds in 1915 that allowed the Bureau of Education to build a 25-bed hospital for Alaska Natives at Juneau. Between 1915 and 1930, the Bureau was able to open additional hospitals for Natives at Akiak, Noorvik, Unalaska, and Tanana. When the Bureau of Indian Affairs took over the Bureau of Education's responsibilities in Alaska in 1931, the annual appropriation for Native health care was S168,000. The bureau operated seven hospitals and a boat. Bureau doctors were stationed at each of the hospitals, and part-time contract physicians were employed at Cordova, Nome, and Unalaska. Bureau nurses were stationed at 16 locations throughout Alaska.10
After World War II the Territory of Alaska appointed its first Commissioner of Health. A territorial health program followed. Mobile health units operated on roads and on the Alaska Railroad. Two ships, the Hygiene and the Health. took itinerant. medical care to communities on the Aleutian Islands and to Alaskas western coast. The Yukon Health traveled up and down the Yukon River. Village chemotherapy aides were trained at this time. The territory also opened a 150-bed tuberculosis sanitorium at Seward in 1946. Despite these efforts, tuberculosis continued to ravage Alaska Natives. The annual death rate from tuberculosis for Alaska Natives was 653 deaths per 100,000 at a time when the total Native population was only about 34,000.11
Faced with a Native population being decimated by tuberculosis, Congress in 1949 approved funding for a 400-bed Native hospital in Anchorage that opened in 1953.
In 1955 the United States Public Health Service relieved the Bureau of Indian Affairs of its responsibility for Native health care. It created the Alaska Area Native Health Service to administer these responsibilities. Although the Juneau Native hospital closed in 1958, the Public Health Service opened new Native hospitals at Kotzebue in 1961 and Barrow in 1965. Hospitals at Bethel, Kanakanak (Dillingham), and Anchorage were renovated in the 1960s. Village health aide training continued, and a radio medical network was established so that the aides could consult with doctors when needed.12
Formation of regional health boards culminated in 1969 in formation of the statewide Alaska Native Health Board. This provided a channel for advice to the Alaska Native Health Service and a voice for advocacy of change in Native health programs. The most significant of those changes was what has become known as "638" contracting.13
This landmark in Alaska Native health care was reached in 1975 when the Indian Self-Determination and Education Assistance Act (P.L. 93-638) enabled Native regional nonprofit corporations or health corporations to manage health programs under contract. The corporations could then meld federal and state health care assistance programs By the 1980s regional nonprofit or specially formed health care corporations were managing delivery of health care to Alaska Natives everywhere except in part of Barrow and in Anchorage. In Barrow, the relatively affluent eligible corporation chose to supplement the federal program rather than to manage it. In Anchorage, the statewide nature of services offered by the Alaska Native Medical Center and the technical "638" requirements for village resolutions retarded local management.14
C. Behavioral Underpinnings and Other Related Factors
The shift in many morbidity and mortality statistics, away from infectious diseases and toward increased behavioral problems, can be attributed to some extent to issues related to Alaska Native traditions and values having to do with child rearing and the ways children are taught to behave according to acceptable Native standards. Although there are many differences between the cultural groups in Alaska, one consistent pattern emerges: in comparison to common practices used in EuroAmerican society, Native children are expected to learn from observation more than from direct instruction or intervention.15
Traditionally, a Native child was not instructed how to fish or hunt or trap as much as he or she was expected to observe carefully when parents were engaged in those activities and mimic the behavior until he/she got it right. Habits related to eating, hygiene, and other health topics were to be acquired in the same way. Families tended to be close-knit for survival purposes, and there were few if any distractions for a child to prevent this learning from taking place.16 Over the years, however, with growing Western influence, the traditional ways of the Alaska Native people were increasingly distorted by Russians, missionaries, teachers, and others who brought with them the very direct, controlling manners and mannerisms of the non-Native world, to the point that earlier in this century Alaska Native children were physically punished for speaking in their first tongue or exhibiting any practices that were Native (and thus, by their inherent nature, were seen by these non-Native teachers as evil). Children no longer learned primarily from their parents, and the ways of learning also changed.
Direct instruction and "following orders" replaced observation and assimilation, while other negative changes were also taking place. As the lives and lifestyles of traditional Alaska Natives were increasingly displaced, unhealthy foods, alcohol, and other factors entered Alaska at an alarming rate, concomitant with loss of self-esteem and self-worth and a general sense of wondering what life was all about any more and how it could possibly improve. These rapid changes occurring at a frightening pace to an entire "nation" of Arctic and sub-Arctic indigenous people whose lifestyles had remained relatively unchanged for thousands of years17 produced predictable outcomes, and the health statistics show those clearly.
The shift in emphasis from self-control to a control imposed by powerful others encompassed all realms of Alaska Natives' lives, from governance to health. The insidious effects of this imposition have grown to enormous proportions, as the data show, and must be reversed. As this study will document and recommend, there are ways in which both the state and federal governments can (i.e., have the authority, if not the immediate ability to) change course quickly to prevent further erosion of personal responsibility for one's health. But if changes are not immediately realized, the system as it now stands will cause an even greater level of disability for the Native person, the Native family, and the Native community throughout Alaska.
D. Changes in Public Health for Natives in the 1970s
Three important events occurred in sequence as Alaska entered the last quarter of the 20th century. The first was the passage of P.L. 93-638, the Indian Self-Determination and Education Assistance Act in 1975, the second was the passage of the 1976 Indian Health Care Improvement Act,18 and the third was a less abrupt shift in public health policy toward health education and disease prevention that is, the primary end of the continuum rather than the emphasis on secondary and tertiary care which had historically predominated. Healthy People was published by the federal government in July 1979, establishing a milestone in the growth of the public health system of the United States. The foreword, written by Secretary Joseph Califano, sets the tone:
Let us make no mistake about the purpose of this, the first Surgeon Generals Report on Health Promotion and Disease Prevention. Its purpose is to encourage a second public health revolution in the history of the United States.
Let us make no mistake about the significance of this document. It represents an emerging consensus among scientists and the health community that the Nation's health strategy must be dramatically recast to emphasize the prevention of disease.19
Another significant change in federal policy was brought about by P.L. 93-638, which marked a distinct shift in orientation and philosophy concerning the treatment of Native American people, as illustrated by its preamble:
The Congress . . . finds that (1) the prolonged Federal domination of Indian service programs has served to retard rather than enhance the progress of Indian people and their communities by depriving Indians of the full opportunity to develop leadership skills crucial to the realization of self-government and has denied to the Indian people an effective voice in the planning and implementation of programs for the benefit of Indians, which are responsive to the true needs of Indian communities; and (2) the Indian people will never surrender their desire to control their relationships both among themselves and with non-Indian governments, organizations, and persons.20
The new approach toward serving Natives encouraged tribes to serve themselves, providing assistance in the way of grants to enable subsequent contracting of services from the federal government. Instead of the government delivering services directly, it would shift, according to the Act, to providing the money for tribes to deliver services to their members. Over the 18 years since passage of P.L. 93-638, it appears that in Alaska the change has occurred quite effectively at the governmental and administrative level, with a majority of Indian Health Service programs now administered by tribes and tribal organizations under P.L. 93-638.
A distinction should be made between the self-determination movement as it relates to federal policy changes and programs brought about by P.L. 93-638, and the acceptance of "self-determination" on a personal and communal level. Both have a bearing on the success of federal health initiatives in Alaska and the current health status of Alaska Native people, even though they represent two different facets of self-determination, as a concept and a policy. There has been a significant alteration in service delivery and funding for Indian Health Service programs since 1975, with most of the Service Units in Alaska having been contracted by tribes and tribal organizations (e.g., Regional Native Health Corporations). The growth in the percentage of health dollars in Alaska controlled by Native groups is incredible, and there have been no retrocessions or failures in any of the Indian Health Service contracts to date. All in all, the implementation of P.L. 93-638 has been and continues to be a success in Alaska.
But, in many respects, the third event, the Indian Health Care improvement Act, holds the most significant, long-range meaning, because it establishes the trust responsibility that the federal government has to provide health care services to Native Americans. Quoting section 3 of that Act:
. . . [I]t is the policy of this nation, in fulfillment of its special responsibilities and legal obligations to the American Indian people, to meet the national goal of providing the highest possible health status to Indians and provide existing Indian health services with all resources necessary to effect that policy.21
This commitment on the part of the government was tested in a subsequent case in the South Dakota Federal District Court, which found that:
The Congress in 1976 stated that the federal government had a responsibility to provide health care for Indians. Therefore, when we say that the trust responsibility requires a certain course of action, we do not refer to a relationship that exists only in the abstract, but rather to a congressionally recognized duty to provide services for a particular category of human needs.
When the Congress legislates for Indians only, something more than a statutory entitlement is involved. Congress is acting upon the premise that a special relationship is involved and is acting to meet the obligations inherent in that relationship . . . We have, therefore, read and construed the Indian Health Care Improvement Act as a manifestation of what Congress thinks the trust responsibility requires of federal officials, with whatever funds are available, when they try to meet Indian health needs.22
The Alaska Natives Commission reminds the federal government of its trust responsibility to provide ongoing health care to Alaska Natives. In these times of budget cutting to lower the national debt, the Indian Health Service and Congress must not lose sight of this fundamental and perpetual obligation to the country's indigenous people.
In this context, recent discussions regarding options for health care reform have occasionally included a proposal to "force" Natives to choose between a coverage plan that would pay for 80 percent of services that they receive while permitting them to choose the provider that they receive them from or a coverage plan that would resemble the current Indian Health Service, with 100 percent coverage but more limited services. The Commission recommends that for the government to fulfill its trust responsibility, consistent with the Indian Health Care Financing Act, Native people should be enrolled simultaneously in both plans, thereby enabling them to receive health care at no cost from the Indian Health Service while having the option of obtaining higher level procedures from private hospitals according to the "80 percent" plan.
II. Indicators of Current Alaska Native Health Problems
A. Environmental Health
There are several different aspects of environmental health that have been brought to the attention of the members of the Commission in hearings held around Alaska. Those that present the greatest health hazards and stand out as the most compelling problems to resolve quickly comprise the primary topics here, but there are others as well. Approximately 48 percent of the Alaska Native population resides in communities that do have running water and flush toilets, but the rest over. half do not. This section of the study deals with the problems faced by rural Alaska Native families that must live in conditions inferior to practically any other segment of the United States' population.
1. Water and Sewer Problems in Rural Alaska
Table 1 presents data provided by the office of Environmental Health and Engineering, Alaska Area Native Health Service, that show the current state of water and sewer systems in 192 rural Alaska villages. (Note: The number of villages in the report from the Alaska Area represents about ten fewer than the presently occupied Native villages contained in the new list of federally acknowledged tribes in Alaska.) Although more than 1.3 billion dollars have been spent building water and sewer systems in rural Alaska, a large number of villages as can be seen have only rudimentary water and sewer utilities.
Table 1(a): Water Systems in Rural Alaska23
The problems related to environmental health have been brought before the state and federal governments over the years. The following quote from the testimony that Ms. Anne M. Walker, Executive Director of the Alaska Native Health Board, offered to the House Appropriations Subcommittee on Interior and Related Agencies in May 1993 is exemplary:
The first issue I wish to bring to your attention is the deplorable sanitation conditions that exist in many Alaska Native villages. There are over 200 Native villages in Alaska, and two-thirds of them are without piped water and sewer systems. Most families do not even have outhouses due to high water tables. Sewage systems instead consist of "honey buckets" five-gallon buckets with toilet lids on them situated inside the home or business. There is no running water to wash your hands with after you use the honey bucket this is true even in many of our health clinics. Everyone agrees that the technology exists to solve this problem, yet our people continue to suffer not just the inconvenience of Third World sanitation conditions but the considerable health risks that accompany poor sanitation. For our people to be subjected to conditions like these in the 1990s is a disgrace, particularly in light of the federal government's trust responsibility for the health and welfare of Native Americans.
a. Public Attention. A series of articles published by the Anchorage Daily News in September 1992 helped to focus the attention of the Alaska public and its legislature on the water and sewer needs of bush Alaska, but beyond rhetoric little has been accomplished as a result of the heightened awareness of the problems. The issues are complex, and potential solutions are very costly. It is the conclusion of the Commission that the most obvious remedy, constructing a water and sewer system in every village, is impractical if not impossible. In some geographical areas of Alaska, the physical conditions (e.g., geography and geology) simply will not permit this solution to be implemented. Villages were not located where they are with thoughts of public works, plumbing, and water treatment in mind; and they were not created with any forecasting of population growth or comprehension of the size to which the community might grow in the 20th or 21st centuries. A village site that was ideal for a small, mobile community two or three hundred years ago finds itself, in 1993, inappropriate for a permanent population 10 to 20 times its original size. Where the geography or geology will not endure the installation of modern water and sewer systems, alternative solutions must be found. Where the land might withstand it but climate makes standard approaches impractical, innovative solutions will be required. The recommendations of the Commission look to address these issues.
Table l(b): Sewer Systems in Rural Alaska24
|Honey Bucket Haul||
|Vacuum Truck Haul||
b. Costs. Estimates for completing the installation of safe water and sewer systems in all the villages of Alaska have reached a billion dollars, but that does not describe the total cost to the government, were it to occur. The Public Health Service has projected that the annual cost of maintaining these systems, once in place, would exceed $40,000,00O.25 The enormous costs that the government may face were brought to the attention of the Commission by Mr. Dennis M. Taddy, an engineer on the staff of Tanana Chiefs Conference, Inc.
The Indian Sanitation Facilities Act, Public Law 86-121, was enacted to "provide essential sanitation facilities" for American Indians and Alaska Natives. Today, over thirty-three years later, we are still working to provide "essential" facilities to Alaska's first people . . .
The IHS [Indian Health Service] FY92 Sanitation Deficiency System for the State of Alaska reported 378 projects with a total cost of over $1,000,000,000. Of those projects more than five-hundred million dollars are to provide or improve potable water systems. In a typical year, 10 to 15 projects will be funded. The State of Alaska Department of Environmental Conservation, Village Safe Water Program (VSW) for the same time period had approximately one hundred grant requests with a cost of over one hundred million dollars to address sanitation facilities projects. The State of Alaska funded approximately $25,000,000 worth of projects. EPA [Environmental Protection Agency] also funded about $9,000,000 worth of projects; part of that funding was for projects in the Lower 48. EPA-funded projects were limited to waste water system improvements.
Given Alaska's dwindling oil revenues and the state of the United States economy, it is unlikely that the funds needed either to install or to maintain these many systems will be forthcoming. However, in the case of at least one village, a local solution has been implemented with great success. The members of the Commission visited Emmonak and were proudly shown the water and sewer systems that this village has created. The Commission feels that this single success story may offer insights for other villages in their search for safe water and sewage disposal and treatment systems.
2. Solid and Toxic Waste Produced in Villages
Water and sewer problems are not the only health hazards that exist in many villages in Alaska. It is not uncommon for "dumps" in villages to have been selected solely for their convenience, and it is even more common for them to have been the receptacle for car batteries and other items containing highly toxic waste. With the tightening of environmental regulations and their legislative enforcement (e.g., the 1984 Hazardous and Solid Waste Amendments to the Resource Conservation and Recovery Act [RCRA]), many, if not most, Alaska Native villages are now out of compliance with the new regulations. More important than the possible legal consequences (which, under RCRA, can be severe) are the dangers that these waste disposal sites and their contents pose to the residents of the villages.
The extreme case of toxic waste that came to light during the Alaska Natives Commission's hearings and has attracted the attention of the press is that of Point Hope, which is adjacent to a nuclear waste disposal area, Project Chariot, that was created as an "experiment" by the Department of Defense in 1962. The federal government has recently spent $6,800,000 to remove the contaminated soil, but many of the Inupiaq residents of the area feel that the damage has already been done. Citing high rates of cancer and abnormalities, they contend that the radioactivity, which now (by government reports) appears to be low, was for many years beyond acceptable limits. At the heart of this issue for the Commission is the disregard that the federal and state governments had for the Inupiat of Point Hope and the other villages in the vicinity of their nuclear "experiment" and the failure of either government to provide convincing evidence that their policies have changed since that time.
Prior to Project Chariot, there were multitudes of other examples of the total disregard for Alaska Natives by the Department of Defense. The most striking, of course, was the relocation of Aleuts from their homes for the ostensible reason of protecting them from the Japanese. The death and destruction that resulted finally led to a Congressional reparation act, decades late and a thousand miles short of repaying the individuals and families who lost everything at the hands, not of the Japanese but of the American government. Many other examples can be offered. From the Aleutian Chain to the North Slope, there are thousands of abandoned barrels and other pieces of materiel left behind by the Armed Forces, from World War II to recent years. Even now, with migrating waterfowl under several layers of protection by governmental regulation and the topic of much concern by Yupiks in Western Alaska who have been prohibited from harvesting these birds in traditional ways, Fort Richardson Army Base outside Anchorage was found to have slaughtered thousands of ducks and geese that had- ingested the poisonous remains of explosives used in target practice. That target practice continues today.
a. Disposal of Oil: Another Toxic Waste Problem. In 1990, the Office of Environmental Health, Public Health Service, conducted a study of 22 rural Native communities in the Anchorage Service Unit of the Indian Health Service to determine how the communities disposed of used oil from diesel generators and found that 14 (70%) were doing so improperly by open burning, dumping in the landfill, etc. Not only were these methods hazardous to the residents, but villages were in jeopardy of being out of compliance with regulations of both the Alaska Department of Environmental Conservation and the federal Environmental Protection Agency. The Office then researched and recommended proper used-oil disposal alternatives and shared the findings with these communities in 1990. A follow-up survey of the same communities in 1992 showed that 50 percent continued to dispose of their used oil improperly.26
Two issues are raised by this study: first is the danger that used oil poses to the health of Alaska Natives residing in these and many other villages. The second is the fact that even after the diesel generator operator and the village council president in each of these communities were informed of the proper way to dispose of the oil, 50 percent continued their practices unchanged. This did represent a reduction from 70 percent in 1990, but it was far from an overwhelming change in behavior on the part of either the operators or the village leaders.
The question must be asked whether this finding is another example of people not assuming or accepting the responsibility for their own healthy futures or whether there were other overriding factors involved. The data are not sufficient to answer the question, but the Indian Health Service is encouraged to pursue both the study of the problem and the endeavor to change the practices of improper disposal in Alaska Native villages.
Beyond the health hazards imposed by unsafe water and sewage conditions and the disposal of other types of toxic waste, problems of insufficient and inadequate housing are pervasive throughout rural Alaska. The severity of these problems varies from region to region. Testimony taken in Nome pointed to the difficulties being faced in the Bering Straits region, where the Native regional non-profit corporation, Kawerak, had recently completed an assessment of needs in the villages that it serves. Ms. Eileen Norbert reported some of the results:
Currently, 47 percent of housing units in the Bering Straits Region are substandard and this comes from our own housing inventory of which 43 percent need repairs and 57 percent need total replacement, as opposed to the national average being 10 percent.
Overcrowding is also a problem: 4.52 persons live in a Native household in this region. Thirty-six percent of single-family homes in the region have two or more families living in the home.27
Housing problems have been the topic of numerous studies over the years. One of the most comprehensive was prepared for the Alaska Department of Community and Regional Affairs by the consulting firm CH2M Hill in 1982, "Alaskan Statewide Housing Needs Study," which in turn referred to studies and reports from many years before.28 Consistent findings reported in these many studies were repeated in a very detailed survey conducted in 1988. Some of the findings from this study are presented below.29
Household size and overcrowding:
The average number of members per household in rural Alaska was 3.70. In comparison, Anchorage households have an average size of 2.72.
The Arctic Slope region had the highest percentage (18.7%) of households with three or more generations per house. Calista region was second with 16.4 percent and Bering Straits had 15.4 percent. Overcrowding conditions appeared to be the worst in the Calista and NANA regions. 29 percent of households in these regions had 100 or less square feet per resident. Nearly 87 percent of houses in NANA region had less than 300 square feet. 81 percent of the houses in Calista region and 72 percent of the houses in Doyon region was less than 300 square feet. In comparison, Anchorage had an average of 600 square feet per resident.
Physical condition of dwellings:
The highest percentage of houses rated in need of replacement by region was Ahtna with 21 percent, followed by Doyon region, 17 percent, Aleut region, 10 percent, and NANA region, 10 percent. A total of 6,740 new houses [was determined to be needed] by consolidating the total number of homes needing immediate replacement with the total number of households with three or more generations. Doyon region alone accounted for 3,169 of the new houses needed.
Significance of findings:
Although conditions vary widely, the inescapable conclusion apparent from the survey results is that . . . rural Alaska has dramatically poor housing conditions in terms of space per resident and state of repair. Crowded multi-generational families occupying dwellings in run-down condition is far too prevalent.
Based on the current costs. for rural housing of $116,000 per new house . . ., $781,813,000 will be needed to build the estimated 6,740 houses. If 6,740 were built to provide new housing for homes needing immediate replacement and new houses for the displaced third or fourth generations, overcrowded conditions in rural Alaska would still be a problem. [In order to solve the long-term problem) the combined cost of providing new housing for homes needing replacement; third and fourth generations needing a home; and additions or new homes to alleviate overcrowding at 250 square feet or less per resident was $1,474,056,000.
The costs have increased over the years, and the figures used in the 1988 study's projections were probably low to begin with. There are sizable differences in housing construction costs from one region of Alaska to another. Mr. Jim Stevens, who works for the North Slope Borough Housing Department, testified in Barrow that HUD allocations are far below what is needed to construct an adequate, energy-efficient home:
I would ask this Commission to recommend to Congress that the total development costs be raised to reflect the true costs of construction. As an example, currently on the North Slope, HUD allocates $142,000 per unit. The cost of developing a good house, energy-efficient home, is over $160,000. If we are forced to build a home with less money, the contractors will usually skimp on insulation or foundation, or some major aspect of the home, and the people who are paying for the homes, or actually buying the homes, are paying a larger proportion of their income to heat the home.
The Farmer's Home Administration, in making direct loans to people in rural areas, refuses to accept the fact that we have high construction costs. They only allow loans made directly to individuals, no more than $97,000. So that's another program that we are locked out of.30
The personal side of housing conditions was brought to the Commission's attention during numerous hearings. In Copper Center, for example, Mr. Joe Neal Hicks, representing Ahtna, Inc., explained that the houses are in poor condition not only as a result of wear and tear; rather, many are built that way:
The fact stressed by Mr. Stevens in Barrow that not only a lack of money but federal policy is at the heart of much of rural Alaskas housing problems was also mentioned by Katherine McKonkey of Copper Center:
One thing that the government has been really good at is setting us up for failure. We have federal regulations that govern the Native people and their rights. We have the HUD housing. They have regulations on the Native people and how they get their homes, and so many regulations that they keep throwing up in your face about how we can't do this because federal regulations state this.
Well, federal regulations aren't designed to benefit us, I don't think. They hinder us more than anything. We've been dealing with our bad HUD housing situation up here since 1983. And every time we say, "Well, how about if we do this?["] Well, no, federal regulations, you know. You can't get around that.
So we formed a task force which is the Copper River Native Association and Copper River Basin Regional Housing Authority to look at these issues and how we can change federal regulations to benefit all the problems that we have with these homes. And the only thing that really scares me about that is that the federal regulation book for HUD housing regulations is probably, what, one foot thick? Who is going to have the time to review all of those regulations? And who's going to have the time to help change. those regulations? It's going to take us years, you know, and here we are, already dealing with those houses for 12 years already. Never getting ahead.
The poor quality of housing construction in HUD homes was the topic of a critical review conducted in the Calista Region which led to a lawsuit by residents of Mountain Village and five other villages filed in U.S. District Court, claiming that HUD and the local housing authority were negligent in the construction of 212 houses built in the 1980s. The suit contends that officials of the Association of Village Council Presidents warned HUD before many of the houses were even finished that they were substandard.
Among the problems alleged in the lawsuit: defective and inadequate foundations, bad heating systems, lack of fire escapes, defective floor joists, bad ventilation systems, bad insulation, and defective windows and doors.
Federal law, according to the suit, requires that . . . homes be "durable, safe and economical to maintain, contain such amenities as are necessary to guarantee a safe and healthy family life, be of good design and quality architecture and be energy efficient."
According to James Davis, a lawyer for the Alaska Legal Services in Bethel: "Instead of safe, decent and sanitary homes that the home-buyers thought they were purchasing, (they) received defective and dangerous homes that are ill designed, poorly constructed, expensive to heat and thoroughly unsuitable for persons of low income living in the arctic."31
All of the indications are that throughout rural Alaska the housing situation facing Natives is approaching a state of disaster. Not only are existing homes clearly substandard and generally in a state of disrepair, but every year will bring even further dilapidation. Programs that had at one time been able to stem some of the decline in the conditions of housing, such as the Housing Improvement Program and the Low Income Weatherization Program, have declined over the years as an inverse function of the need for them. And the future prospects for appropriations of sufficient size to ensure repair, replacement, and new construction to meet the growing demands of the Alaska Native population are grim. This reality was punctuated recently in an interchange between administration officials and members of the U.S. Senate Interior Appropriations subcommittee. Officials of the Indian Health Service announced that the proposed 1995 budget includes the suspension of funding for all water and sewer improvements, saving $85 million. When asked by Senator Harry Reid, "How can we build houses without water and sewer in them?" the IHS officials responded that the Department of Housing and Urban Development was also cutting back
money to build Native housing.32 The position of the federal administration appears to be to do absolutely nothing to reverse the trend of deteriorating housing for Alaska Natives, much less improve housing for the future.
The federal government must realize that conditions in Alaska require both more flexibility in regulation and higher levels of funding. Far greater control for developing and implementing housing plans should be placed under the authority of the locally empowered Native government where housing construction needs must be met. Federal regulations prohibiting local design and construction should be replaced. Furthermore, limits, construction standards, energy-related design criteria, and the multitude of policies and procedures that regulate construction standards in rural Alaska should be reviewed and revised by a panel composed mostly of Alaska Natives and others who have experience and expertise in arctic and sub-arctic housing construction.
In addition to policy changes, however, is the unavoidable conclusion that to correct housing inadequacies and to ensure sufficient and better quality housing in the future will require large injections of money. As mentioned earlier, the estimates for meeting the need have ranged to 1.5 billion dollars, and every year those estimates will necessarily be increased by higher construction costs and more expensive repairs needed by existing housing units. Rather than taking the attitude that was recently expressed by the administration that neither water/sewer nor housing needs would be met-at all, in order to save money the unsatisfactory human condition to which rural Alaska Native families are subjected and the trust responsibility of the federal government to improve the health, safety, and well-being of the nation's Native people must be re-examined, and priorities must then be re-established to improve their housing conditions. The Commission calls upon Congress to fund a five-year program that will result in the remediation of the substandard housing for rural Alaska Natives and complete the construction of enough new housing units to eliminate at least 80 percent of the over-crowding conditions that prevail. This activity should be carried out in close coordination with the Alaska state government and with village councils, tribal organizations, and Alaska Native corporations.
B. Physical and Behavioral Health Indicators
1. Comparison of Alaska with Other Indian Health Service Areas
The Indian Health Service is divided administratively into twelve areas, of which the entire State of Alaska is one. In 1992, the Service published a report comparing the areas on a number of different factors and statistics. Although some of the figures are clearly dated (from 1979, for example), they do show the health problems from which Alaska Natives suffer most and unique issues that Alaska Natives continue to face relative to the remainder of the service population.
Reviewing some of the socio-demographic data first, Alaska Natives are second highest in the percentage of their population under the age of five years: 14.5 percent versus the Aberdeen Area with 15.5 percent. At the other end of the age range, however, Alaska is at the median: 5.3 percent of the Native population is over the age of 64 years. Putting these two statistics together shows that the shift in the population is clearly to the younger ages; while the proportion of Alaska Native elders is basically average among the country's Native population (i.e., life expectancy is also about average). There will be a rapidly growing number of children if these trends continue. This projection is further substantiated by the fact that (from 1986 through 1989) Alaska ranked second in birth rate with 35.4 per 1,000 population, compared with 30.3 for the national Native rate and only 15.7 for the U.S., all races combined.33 These figures combine to predict a significant acceleration in the numbers of IHS-eligible beneficiaries as the year 2000 approaches.
There are other telling differences in the socio-demographic data reported by the Indian Health Service. Alaska Natives (1980 statistics) had the lowest number of median years of school completed, with only 9.3, as compared to 12.1 years for the entire Indian Health Service population and 12.5 years for the U.S. population as a whole. Similarly, Alaska Natives ranked lowest in the percent of males aged 20 to 64 years who are employed, with 48.4 percent, compared with 62.8 percent for the national Native population and 80.4 percent for the U.S. population as a whole. The figures for the same-aged females show Alaska second lowest behind Navajo Area, with 41.4 percent employed, compared with 45.8 percent and 56.4 percent for the entire Indian Health Service population and U.S. population, respectively. Alaska Natives (1979 statistics) ranked the highest in median household income: $15,750 versus $11,471 for the national Native average (noting that the national average for all races combined was $16,841). However, over 25 percent of Alaska Natives were below the poverty level at that time, due to the high cost of living here.34
2. Intentional and Unintentional Injuries and Deaths
There are increasing numbers of researchers and health professionals who question the distinction that is customarily made between suicide and many of the "unintentional deaths" logged into the Vital Statistics records of Alaska. There is negligible difference, they argue (with conviction), between a young Alaska Native male losing his girlfriend, getting drunk, and shooting himself in the head (recorded as a "suicide") and a young Alaska Native male losing his girlfriend, getting drunk, and going off into the night to freeze to death on his snow machine (recorded as an "unintentional death"). For this reason, the data depicting the incidence of "unintentional injury and death" must be viewed within a conceptual framework that allows the understanding that many "unintentional" deaths were actually intentional but performed in a less obviously suicidal fashion.
a. Self-Inflicted Injury Death. Mentioned earlier was the lengthening of the expected life span of Alaska Natives over the last 40 years. However, accompanying this has been the dramatic increase in intentional deaths: in 1950, the rate of intentional deaths, which includes both suicides and homicides, among Alaska Natives was 29.5 per 100,000 population, while over the period from 1980 through 1989 (the most recent data published), the rate was 77.9 per 100,000. By comparison, the rate of intentional deaths for non-Natives from 1980 through 1989 was less than one-third the Native rate: 25.8 per 100,000. Of the Native intentional death rate, 49.7 per 100,000 were suicides and 28.2 per 100,000 were homicides.35
The suicide and homicide rates among Alaska Natives have received a great deal of attention in recent years. But the solutions will not be found in the raw data that merely report the deaths. Although beset with reporting problems,36 the data do show villages and regions in which there are repeatedly high rates of suicide and areas that are consistently very low or entirely without suicide. This pattern, which has also been found in other northern Native areas,37 demonstrates the non-random nature of the act and may lead to suggestions for improving "mental health" and reducing intentional injury and death. (For more information on Alaska Native suicide, please see Section Two of this volume.)
b. Unintentional Injury and Death. As the intentional death rate has increased over the years, the rate of "unintentional" (i.e., truly accidental) death has declined slightly among Alaska Natives. "Accidents and adverse effects" rank first among the leading causes of death for the Alaska Area of the Indian Health Service, a characteristic that exists in five of the other 12 Areas. The mortality rate for Alaska Natives was 130.6 per 100,000, compared with 54.2 per 100,000 for White Alaskans.38
Unintentional injuries and deaths among Alaska's children remain high, although the data are rather sketchy due to the lack of an injury surveillance system. Injury deaths of children under the age of 15 between 1980 and 1985 totaled 248, the highest rate in the nation. Drowning was the number one cause of unintentional deaths, at a rate of 6.8 per 100,000 children per year, also the highest in the United States. Many of these could have been prevented had the use of personal flotation devices been more widely promoted.
3. Health Problems Related to Sexual Practices
a. Teenage Pregnancy. The estimated rate of pregnancies in 1985 (the most recent data available) was 81 per 1,000 Alaska Native females aged 17 and under versus 71 per 1,000 females of the same age in the United States as a whole.39 The rate of births per 1,000 females aged 15 through 19 in 1988 was 111.3 for Alaska Natives, compared with 44.9 for White Alaskans and 43.7 for White females in the United States as a whole.40 A survey of rural Alaska Native school students conducted in 1989 found that almost 60 percent of all the 10th grade students questioned reported that they had had intercourse, and by the 12th grade 81 percent of the females and 68 percent of the males reported that they had had intercourse. Asked if they worried about getting pregnant or, for males, getting somebody else pregnant, 21 percent of the sexually active males and 33 percent of the sexually active females responded that they did. Yet, of these same sexually active students, 22 percent reported that they or their partner do not use any form of birth control, and 19 percent of the females reported that they have become pregnant at least once. In comparisons made by the study, the statistics show that sexual activity and probability of or actual pregnancy are higher among Native students than among non-Native students.41
b. Sexually Transmitted Disease. A study of 1,126 Alaska Native women (average age 28.3 years) conducted between 1988 and 1990 found that 70.6 percent were positive for a present or previous sexually transmitted disease.42 The number of Alaska Natives seeking treatment for gonorrhea throughout the Alaska Area Native Health Service has declined significantly over the years from a rate of 3,829 per 100,000 population in 1979 to 624 per 100,000 in 1990, but that rate is still much higher than among non-Native Alaskans (282 per 100,000) and other U.S. citizens (221 per 100,000).43
c. HIV and AIDS. The Section of Epidemiology, Alaska Department of Health and Social Services, has published statistics on AIDS cases diagnosed through June 30, 1993, which show the continuing increase of the disease in Alaska. As of that date, a total of 180 people had been diagnosed, 100 of whom have died; for the first six months of calendar 1993, there have been more cases of AIDS than in all of 1990.44 Of the total number of AIDS cases, 14 percent are Alaska Native, which represents the approximate proportion of Natives in the state's population.45 Data from state laboratories show that 57,435 Alaska residents were tested for HIV between May 1985 and June 1993. Of that number, 12,041 were Alaska Natives, 69 of whom (0.6%) tested positive. This is to be compared with 0.9 percent for Whites, 1.3 percent for Blacks, and 2.4 percent for Hispanics. The risk category with the highest percentage of positive tests was homosexual/bisexual males.46 It appears that the incidence of HIV and AIDS among Alaska Natives today is no worse than among non-Native Alaskans, based on the sample who have been tested. The Commission supports aggressive health education campaigns specific to avoiding HIV and AIDS with increased targeted programs in school districts of the state.
The Commission recommends that aggressive health education campaigns specific to avoiding HIV and AIDS be initiated and that a curriculum addressing the disease be established in schools statewide. From the evidence that is available, AIDS is just beginning to spread among Alaska Natives, and there are dire predictions about the extent of that spread unless health patterns change.
All educational, health, and social service agencies should act now to prevent another major epidemic of a deadly disease among the Alaska Native people. The environmental conditions of Alaska Natives are more conducive to contagious disease than are the environmental conditions of most non-Natives. Furthermore, alcohol and drug abuse has been shown to affect judgment and increase the transmission of sexually transmitted diseases, of which HIV is one. Thus, among Alaska Natives, substance abuse and other health problems lower resistance and further enhance the probability of the acquisition of HIV. All ages should be included in the HIV/AIDS education and prevention efforts, not just the youth.
The Commission feels that educating and raising the awareness of parents, and helping them to help their children, is an essential element of a successful anti-AIDS campaign.
4. Cancer, Diabetes, and Tuberculosis
a. Cancer. For many years, Alaska Natives experienced cancer rates that were below the rest of the nation, but that situation has clearly changed. The following discussions highlight some of the new findings related to the increase in cancer among the Alaska Native population, based on the limited research that has been accomplished to date.
Alaska Native women experience higher invasive cervical cancer incidence and mortality rates than U.S. Whites, despite a long-standing cancer screening program.47 This is apparently due to the high rate of sexually transmitted disease mentioned earlier:
Human Papillomavirus (HPV) is now considered to be among the most prevalent and rapidly increasing sexually transmitted diseases in the United States today. It has become strongly associated with invasive cervical cancer and the preinvasive histologic changes that herald this disease thereby permitting successful treatment . . . During the period 1969-1983, 83 invasive cervical cancers were diagnosed for an age-adjusted rate of 28 per 100,000, 2-3 times higher than that of U.S. white women. During this interval, incidence rates increased 335 percent while rates for both U.S. whites and blacks decreased over 40 percent. The decrease is thought to be secondary to appropriate screening and treatment. Despite screening programs for Alaska Native women over the last 30 years, the mortality rate in this population is over three times higher than U.S. whites.48
All types included, cancer has become the leading cause of death in women in Alaska and the third leading cause in men. Lung cancer is the predominant cause of cancer death in both Alaska Native men and women and accounts for over 30 percent of the cancer deaths; 90 percent of lung cancer is directly attributable to smoking. The alarming increases in lung cancers that have occurred among the Alaska Native population in recent years have prompted officials of the Alaska Area Native Health Service to emphasize greater prevention activities, as can be seen in these comments of Dr. Anne Lanier:
From the perspective of cancer prevention, the data clearly indicate that at least one-third of new cancers and cancer deaths are tobacco related. Clearly, eradication of tobacco use from this population will have the most profound effect on cancer incidence and mortality, and, of course, result in marked improvements in morbidity and mortality from nearly every other major cause of death and disability (e.g., cardiovascular and cerebral vascular disease, chronic bronchitis and emphysema, pregnancy outcome, SIDS, respiratory disease in children and adults, etc.).49
The importance of health education, prevention activities, and early screening must be stressed. The high incidence of and death rate from cervical cancer among Native women continues even though Pap smear testing has been available for many years. On the other hand, mammography for screening breast cancer has been available on a limited basis only (the four mammography units in the Alaska Area are located in Anchorage, Bethel, Nome, and Sitka). Given the remote residences of much of the Alaska Native population, the costs of providing adequate access to screening until a more mobile system is devised have been estimated to range from $1,500,000 to $3,000,000 per year.50 Nonetheless, the Commission encourages the Alaska Native Health Service, as well as the Alaska Department of Health and Social Services, to aggressively pursue new approaches to increasing screening and diagnostic capabilities while at the same time offering greatly enhanced health education and risk prevention activities for Alaska Natives.
b. Diabetes. The dissolution of the Soviet Union has opened new opportunities for comparative studies of Alaska Natives and the Native people of the Chukotkac Region of Russia across the Bering Straits. Most notable are recent studies of the eating habits, lifestyles, and health consequences of Siberian Yupik who had, until the erection of the Iron Curtain in 1948, been united as one group; many families separated at that time, some on St. Lawrence Island in Alaska and others on the Chukotka mainland, were re-united in the last two years.
Studies by Nobmann and others at the Alaska Area Native Health Service have revealed major differences between the Russian Yupik and Alaska Yupik after fewer than 50 years of separation. One characteristic of the Alaska Yupik, compared with their Russian relatives, is the high rate of diabetes: approximately 9.7 per 1,000 population as opposed to 1.0 per 1,000 on the Russian side of the Straits, only 40 miles away.51 Researchers attribute these differences largely to differences in diet which, they hypothesize, is the same cause for the increases in diabetes among Alaska Natives throughout the state. Statewide rates for Alaska Natives are, in fact, higher than for the Bering Straits region. From 1985 to 1989, the rate of diabetes for Alaska Natives rose from 15.7 to 18.2 per 1,000 population.52
c. Tuberculosis. In Alaska, tuberculosis is far from eradicated, even though the frightening statistics from 40 and 50 years ago are no longer prevalent. Alaska Natives still have an incidence rate of 92.2 per 100,000 population, which is almost ten times higher than the U.S. rate of 9.3 per 100,000. This is significantly lower than the record-breaking rates of the 1930s and 1940s (incidence of 10,280 per 100,000 and death rate of 655 per 100,000), but it is still excessive.53 Recent rates of new tuberculosis cases reported reveal that Alaska Natives recorded 60.7 per 100,000, the highest among the Indian Health Service Areas and 5.9 times higher than the U.S. rate (10.3 per 100,000). The second highest Area, Nashville, reported 43.3 new cases per 100,000 by comparison, and the Indian Health Service average is 25.7 per 100,000.54
5. Substance Abuse and Related Health Issues
a. Alcohol and Drugs: General. Alcohol abuse, alcoholism, drug abuse and addiction are the topics of a separate section and will be addressed here only in passing, looking more at the costs involved in providing intervention and treatment for substance abusers.
During the federal 1993 fiscal year, the Indian Health Service allocated approximately $5,670,000 in alcohol and drug abuse funds in its contracts with Alaska Native regional corporations and tribal contractors under P.L. 93-638 and P.L 99-570; in addition, the Alaska Area Native Health Service maintains a staff in its Alcohol Program Office which is also supported by federal substance abuse funds. Within the U.S. Department of Health and Human Services, the Center for Substance Abuse Prevention and Center for Substance Abuse Treatment both have several grants in place in Alaska, with a combined total well in excess of $1,000,000 per year. And even more program funding is derived from the state legislature's appropriations to the Alaska Department of Health and Social Services, Division of Alcoholism and Drug Abuse.
During the current fiscal year, approximately $6,568,000 in state funds have been awarded to Alaska Native regional corporations and tribal substance abuse programs in Alaska, with an additional $925,000 for the Rural Human Services System which offers substance abuse and mental health services in a total of 50 Alaska Native villages. Altogether, the annual costs of offering substance abuse programs for Alaska Natives total approximately $13,163,000 without calculating in Medicaid, Medicare, or other third-party reimbursement for treatment. Considering the fact that there are about 60,800 Natives in Alaska 15 years of age or older,55 this amounts to a cost of about $217 per adult per year in revenues just to support substance abuse programs. Yet, with this continuing "investment," it is clear that the situation has not significantly improved. The findings of the Commission support two conclusions, both of which lead to recommendations that are presented later. First, the current treatment system is not very effective in producing "clean and sober" individuals and healthy families. Additional options must be considered and greater emphasis must be placed on primary prevention. Second, there is no strong evidence that the type of alcohol abuse that predominates among Alaska Native people is best characterized as "alcoholism" in the same sense that alcohol addiction presents itself among non-Native drinkers. The issue deserves further study.
At every hearing held by the Commission and its task forces, alcohol was consistently raised as a major problem. There is a need for new, and perhaps dramatically different, approaches to be devised and implemented. The Commission is certain that only by attacking substance abuse at the family and community levels (rather than individually) will change ever occur.
b. Substance Abuse: FAS and FAE. One entirely preventable impact of the use and abuse of alcohol and drugs is collectively referred to as "Alcohol Related Birth Defects" (ARBD), the two best-known and documented types of which are Fetal Alcohol Syndrome (FAS) and Fetal Alcohol Effects (FAE). Since the mid-1980s, the high rates of FAE and FAS among Alaska's Natives have received considerable attention from the Alaska Area Native Health Service and the State of Alaska's Division of Alcoholism and Drug Abuse. In some parts of Alaska, the statistics are staggering. In the Copper River Basin in the late 1980s, for example, it was found that the FAS rate was over 350 per 1,000 live births, which means that 35 percent of the births among the Natives of that region suffered from discernible FAS. The statewide incidence of FAS among Alaska Natives born between 1981 and 1988 averaged 4.2 per 1,000 live births.56 Programs designed to alert pregnant women to the dangers of alcohol and drug use, combined with new treatment options in Alaska, have apparently been the cause of a significant reduction in FAS among the Alaska Native population. Recent reports indicate that the rate for 1989-1990 was 2.1 per 1,000 live births, which is still over four times higher than the rate for the state as a whole, 0.5 per 1,000.57 Thus, although gains have been made, there is much left to be accomplished, and the proposed strengthening of health education and attitudes will help accomplish the objective of eliminating FAS and FAE in the Alaska Native population. (For more information on FAS and EAE, please see Section Two of this volume.)
c. Substance Abuse: Tobacco. The general shift during the 20th century from infectious disease to negative health consequences of behavior among the primary causes of morbidity and mortality for Alaska Natives has produced new targets for the health system to address. Among these, one of the first is lung disease due to smoking. Cigarette smoking is the single-most preventable cause of death and disease; it is a risk factor for five of the ten leading causes of death. The prevalence of smoking among Alaskan adults is 25.9 percent, and it is estimated that 38.6 percent of Alaska Native/American Indian adults smoke, compared with 25.1 percent of White adults.58 Other data report even higher figures (as high as 60% among Native adults according to one study).
The extent of the health crisis resulting from smoking and smokeless tobacco use is evident in a number of sources, one of which, published by a member of the medical staff of the Alaska Area Native Health Service, is quoted here:
Excess use of cigarettes among Alaskan and Canadian children as well as adults is well documented. Some evidence is also available to show that Alaska Natives begin smoking cigarettes at an earlier age than non-Natives. Finally, data also show high rates of smokeless tobacco use among Alaska Native school children with rates approaching 50 percent in the older age group [i.e., grades 7-12].
High rates of use are occurring among Native youth despite the fact that knowledge of adverse effects exists. In a school survey [conducted by the Alaska Native Health Board] in which high rates of use were documented for both cigarettes and smokeless tobacco, nearly all children who were questioned responded that they knew tobacco products were harmful 89 percent and 72 percent for smokeless tobacco and 99 percent and 97 percent for cigarettes.
We are in the midst of an epidemic. Both lung cancer rates and tobacco use rates are excessive in the North. We do not know how long these high rates of tobacco use have been present. Since a latent period of 20 or more years may exist before the adverse effects of tobacco are fully apparent, the Northern populations may not yet have experienced the maximum adverse effects of tobacco use.59
In addition to the consequences that befall the tobacco user, the new concern about second-hand smoke and its effects on children has only begun to produce data, but it is obvious even without research that with the excessively high prevalence of smoking among Alaska Natives and the large number of children who live in smoking households (i.e., the average Native household in Alaska is 3.66, compared with 2.75 for the United States as a whole), negative health consequences, including respiratory disease, will accelerate.
In federal FY 1991, the last year for which data have been reported, the second-most frequent reasons for pediatric (0-14 years) outpatient visits within the Alaska Area Native Health Service system were diseases of the respiratory system (21,457 visits) surpassed only by ear diseases (due to the prevalence of otitis media). Other consequences of tobacco use should also be considered: for example, the relationship between the Sudden Infant Death Syndrome (SIDS) and smoking has been established, and the excessive rates of neonatal and post-neonatal deaths among Alaska Natives are discussed on the next page.
d. Lack of Consistent Data. The Alaska Department of Health and Social Services and the Alaska Area Native Health Service have recently combined forces to assemble a single Management Information System to collect admission data, some treatment data, and discharge data for Alaska Natives receiving substance abuse services. However, the same cannot be said for needs assessment data, which would inform both the federal and state governments about the incidence and prevalence of alcohol and drug use, and abuse, among Alaska Natives. Also missing is a method for collecting information regarding changes in alcohol and drug abuse behaviors and information relative to perceptions of Alaska Natives as to the ways that local and statewide programs can impact substance abuse. The last systematic effort to collect such information on a statewide basis occurred in the 1980s.60
Another set of data related to substance abuse among Alaska Natives measures the effectiveness of the current system to achieve its goals of reducing, if not eliminating, alcohol and drug abuse, even though many millions of dollars continue to flow through that system each year. In February 1993, the Alaska Office of the Ombudsman, responding to a complaint that had been filed about the operation of the Division of Alcoholism and Drug Abuse (ADA) of the Alaska Department of Health and Social Services, published a report that found, among other things, that "ADA does not have a clearly articulated strategy (i.e., system of mission, goals, and objectives) for reducing substance abuse" and that "ADA fails to ensure that the programs it funds are effective." One of the recommendations of the Ombudsman was that ADA should use the next planning cycle to develop outcome evaluation strategies.61
Based on these and other indications that data are lacking, the Commission has determined that a high priority for change must be the immediate establishment of policies and procedures that will ensure: (a) consistent gathering of needs assessment data related to the incidence and prevalence of substance abuse among Alaska Natives (and to ensure a cost-effective approach among all other Alaska residents at the same time); (b) routine sharing of data between the various agencies of the federal and state governments that collect information about substance abuse; and, (c) the establishment of a consistent evaluation methodology assessing the performance of programs that receive funds from the state and federal governments to fight the substance abuse problems that have become endemic in Alaska Native communities. To this end, state and federal agencies must clearly define their objectives in operational terms; otherwise, as noted by the Ombudsman, there is no way to measure whether those objectives are being met. This conclusion is represented among the Commission's recommendations and applies to all future programs, particularly those instituted in response to the Commission's recommendation for a major shift in treatment approaches. That is, the entire approach to "treating" alcohol and drug abuse must shift from the secondary and tertiary emphasis that has prevailed in Alaska to one that concentrates on primary prevention, community development and empowerment programs, and highly focused activities for Alaska Native youth.
6. Childrens Physical and Emotional Health Issues
a. Infant Mortality. The Infant Mortality Rate (IMR) for Alaska Natives is consistently higher than the IMR in the United States as a whole, as Table 2 shows for the period from 1977 through 1987. The Alaska Native IMR, shown as the number of deaths per 1,000 births, is a sliding three-year average, to correct for the variability caused by the relatively small population.62
Differences between Alaska Natives and White Alaskans are shown in the table. Even though there are slight improvements in the mortality rate over time (noting that these are sliding five-year averages which, due to their calculation, show slower and more even changes than yearly averages would), there is an inescapable need for further progress in reducing infant mortality among Alaska Natives.63
Table 2: Alaska Native Infant Mortality Rate (Deaths per 1,000)
b. Child Nutrition. Iron-deficiency anemia has long been recognized as a problem among Alaska Native children. Tests conducted between 1983 and 1985 by the Alaska Area Native Health Service showed a prevalence of anemia (defined as hemoglobin < 11 g/dl, hematocrit < 34%) ranging from 22 percent to 28 percent in children under five years of age. Subsequent surveys of school-aged Alaska Native children and adolescents have shown an anemia prevalence of 10 percent or greater, which is to be compared with rates for the United States as a whole of four percent for children three-to-five years old; three percent for children six-to eleven years old; and four percent for children aged 12-17 years old.64 The causes of iron-deficiency anemia in Alaska Native children are not fully understood. The traditional Native diet is rich in iron, and the high anemia prevalence may be due to the decline in traditional foods and replacement by non-Native "junk food," which continues to become more readily available in rural Alaska and more popular among the youth. Thus, the changing diet may account for both iron-deficiency anemia and diabetes.
Data accumulated over the last few decades have consistently shown a positive correlation between the health of an infant and breastfeeding, and both the U.S. Department of Health and Human Services and the Alaska Department of Health and Social Services have established objectives for the year 2000 to increase the prevalence of breastfeeding, especially among low-income and minority women.65 A statewide survey of 1,125 Alaskan mothers conducted in 1990 found consistent differences between Alaska Native mothers and White Alaskan mothers, both in the percentage who were breastfeeding upon discharge from the hospital following the birth of their child and in the length of time those who did breastfeed continued before quitting and switching to a commercial formula or milk. At hospital discharge, 74.4 percent of Native women and 85.7 percent of White women breastfed their infants. Although both figures are substantially higher than the national average of 51.5 percent, the percentage of Native women was lower than that for White women in Alaska.
Native women also tend to stop breastfeeding earlier than others. By the end of the third month, 70 percent of Native mothers have stopped, compared to 55 percent of White mothers.66 Education and instruction of Alaska Native women (and prospective fathers) should be enhanced, beginning no later than during pre-natal care to increase the prevalence and duration of breastfeeding and thereby improve childhood health.
Although there are many anecdotal accounts of the decline in Alaska Natives' nutrition due to the introduction and adoption of Western "junk food," at least one report has shown that, in fact, the typical Alaska Native diet is nourishing. Reporting the results of 907 interviews conducted with 359 Alaska Native adults aged 21 to 60 years old, Nobmann concluded:
We found the current diet of Alaska Natives to be neither totally traditional nor totally westernized. It was, on the average, a nourishing diet with many positive aspects which should be continued and promoted. The high intake of fish, water, margarines, poultry, and other low-fat meats is desirable. Meat protein, Vitamin C, and iron intakes for men were good. Alaska Natives in the regions surveyed can feel good about their diets. Yet there were other aspects which could be improved. Intake of fruits and vegetables and whole grains could be increased. The frequent intakes of coffee, sugar, soft drinks, cured meats such as hot dogs, and canned soups could be reduced. Calcium intakes and the iron intake of women could also be improved.67
One of Nobmann's recommendations is that an ongoing diet-monitoring system for Alaska Natives be established "to help measure our progress in reducing the dietary risk factors known to contribute to five of the eight leading causes of Alaska Native deaths."68 Justification for the establishment of a diet-monitoring system is further demonstrated by data reported in the previously mentioned survey of Native school students in rural Alaska. That survey asked students about their intake of the various food groups and disclosed that 50 percent of the Native boys and 57 percent of the girls were found to have a nutritionally inadequate diet in one or more of the food groups, and 71 percent ate "junk food" on a daily basis.69 Given the variability in the reports and the data, as well as the differences that exist among regions, the Commission recommends that the diet-monitoring strategy should be incorporated into the comprehensive health status and health needs assessment data system proposed by the Commission.
c. "Hib." A series of letters that is well known to many Alaska Natives and practically unknown in the Lower 48 is H-i-b, for "Haemophilus influenzae type B," the most common cause of meningitis and a leading cause of other invasive infections in children. It is a deadly disease: despite therapy with antibiotics, the mortality of Haemophilus influenzae type B meningitis remains high, at approximately five percent of the cases, and serious neurologic sequalae occur in as many as 25 percent of the survivors. "Hib" has been the subject of studies by both the Indian Health Service and the National Center for Infectious Diseases' Arctic Investigations Program (AIP), which provided the following:
Studies conducted by AIP have characterized the epidemiological features of disease in Alaska Natives and defined the epidemiology of Hib disease in all population groups in the state. During 1980-1982, 287 confirmed episodes of invasive Hib disease occurred. For children under 5 years of age, the incidences for Eskimos, Indians, and non-Natives were 705, 401, and 129 cases per 100,000 population, respectively. The Native population represents only 16 percent of the population of Alaska but has 51 percent of all invasive Hib discase.70
A concerted effort on the part of the Indian Health Service to immunize Alaska Native children against Hib has shown marked improvement in rates over the last three to five years, as will be discussed in the subsection on Immunization. The Commission notes with admiration those who have aggressively pursued the eradication of this disease and, with its emphasis on health promotion, encourages further anti-Hib efforts.
d. Dental Disease and Related Problems. Baby bottle tooth decay (BBTD) is a specific type of preventable, rampant decay that affects very young children soon after tooth eruption. BBTD results from one or a combination of the following feeding patterns: (a) prolonged bottle feeding, characterized by the use of a bottle beyond the first year of age; (b) inappropriate bottle feeding, such as giving a child a bottle with milk or other sweet beverage in it when he/she is put to bed or at-will bottle feeding during waking hours; or (c) inappropriate breast feeding (e.g., at-will nursing for prolonged periods of time usually during sleeping hours). Studies conducted by the Alaska Area Native Health Service Dental Program in 1991 and 1992 have showed that the rate of BBTD among Alaska Natives exceeds 24 percent, compared with four percent for the United States population as a whole. In other words, the rate among Alaska Natives is estimated to be 480 percent that of the general population. One of the studies also found that Alaska Native children residing in villages had higher rates of dental cavities than did urban Native children.71 A survey of all Alaska Native children residing in Barrow and the seven villages of the North Slope Borough produced the following results:
In this survey, Baby Bottle Tooth Decay (BBTD) was defined as two or more decayed (or missing due to decay) maxillary incisors. Sixty-five percent of the children in Barrow and 74 percent of the children in the villages have BBTD. This is rather shocking when one recalls that the prevalence of BBTD is only four percent in the U.S. child populations.72
The question these data pose for the Commission is this: Do parents and other care givers not know what to do to prevent BBTD and other dental disease in their children or, alternatively, do they know but fail to act for some other reason? The answer will suggest ways to eradicate this and other health problems.
c. Immunization. As mentioned earlier, an aggressive immunization program initiated by the Alaska Area Native Health Service several years ago has produced a significant reduction in the number of Hib cases among Alaska Native infants and children. Prior to universal Hib vaccination, there were 80 cases of Hib disease in the state of Alaska annually, and half of the cases were in Native infants. In 1992, there were only two cases of Hib. Hepatitis B immunization results are similar. For example, prior to universal Hepatitis B immunization, there were 2.2 cases of symptomatic Hepatitis B infections for every 1,000 Yukon Kuskokwim Delta residents, but now the rate is less than 1.0 in 10,000.
The distribution of responsibility for administering vaccinations to Alaska Natives has been shared between the Alaska Department of Health and Social Services and the Alaska Area Native Health Service. In 1990, the latter conducted a study of on-time immunizations in Anchorage and the regions of Bristol Bay, Yukon-Kuskokwim, and Maniilaq. The results showed "strikingly lower on-time immunization rates (within 30 days of recommended immunization) and two-year-old immunization rates" than had been assumed; it also revealed that the P.L. 93-638 contractors were providing more than half of the immunizations in most regions. A subsequent reduction in state funding for the Public Health Nursing program led to memoranda of agreement signed between five of the regional health corporations and the State of Alaska to enable Community Health Aides to administer immunizations. Table 3 shows the current immunization rates for two-year-old children in eight of the service units of the Alaska Area Native Health Service.
Table 3: Immunization Rates for Two-year-olds (FY 1993)
|North Slope Borough||
|Yukon-Kuskokwim Health Corporation||
|Norton Sound Health Corporation||
|Bristol Bay Area Health Corporation||
|Aleutian/Pribilof Islands Association||
|Tanana Chiefs Conference||
The Alaska Area Native Health Service had set, as its objective, that at least four of eight service units would show immunization rates above 80 percent. As the table indicates, that objective has been reached. The Commission urges the Alaska Area Native Health Service to continue to set its objectives to higher rates of immunization in order that by the end of the century all Alaska Native children throughout the state will be age-appropriately immunized.73
The Commission suggests several programmatic changes to help accomplish this objective. The record-keeping and data systems used by the State of Alaska and by the Indian Health Service to document and track immunizations should be combined or, at a minimum, coordinated. At the present time, there is insufficient communication between state and federal health providers, and in many regions the responsibility rests solely with the parents to retain records of which inoculation or vaccination was provided at what time by different providers. A single, automated tracking system accessible by all health providers would simplify record keeping, while not removing the responsibility for a child's care from the parents.
f. Child Abuse and Neglect. The prevalence of child neglect, child abuse, and child sexual abuse in Alaska is high and continues to grow. The total number of reports of harm to children, including abandonment, mental injury, sexual abuse, physical abuse, and neglect, has grown steadily from 7,876 in 1989 to 11,509 in 1992. This represented a 42 percent increase in reports of sexual abuse, 59 percent increase in reports of physical abuse, and 33 percent increase in reports of neglect.
Over 30 percent of the victims of these reported types of child abuse were Alaska Native, and of the total number of reported cases substantiated by the Department of Family and Youth Services, 35 percent were Native. Thus, Alaska Natives are over-represented in cases of child abuse by a factor of two-to-one: the percentage of substantiated cases of abused children is over twice what would be expected based on the overall percentage of Alaska Natives in the population. The sources of the reports of these various types of child abuse include the police, health practitioners, social service agencies, and others who are required by law to report suspected child abuse. But almost 25 percent of the cases are reported by family, friends, and neighbors of the victim. Another 20 percent are reported by school staff.74
Those professionals charged with intervening in and treating cases of child abuse typically project far more instances of actual child abuse than those reported. The aforementioned adolescent health survey conducted in rural Alaska schools in 1989 revealed that 28 percent of girls in grades seven through nine and 37 percent of girls in grades 10 through 12 reported that they had been sexually abused, and 25 percent of those who were abused reported that they had never told anyone. Physical abuse follows similar patterns: 27 percent of the Native girls and 10 percent of the boys reported having been physically abused, but of that number 26 percent of the girls and 52 percent of the boys said that they had not discussed the abuse with anyone.75 It behooves all state and federal agencies and the regional Native non-profit corporations to educate and promote awareness and the importance of disclosure and intervention. A reluctance has surfaced within some communities to expose instances of child abuse. However, the product of child abuse and domestic violence of any sort is the continuation of physical pain and deep-seated psychological damage from generation to generation. Another product is the large number of Native children placed in foster and adoptive homes. In 1992, over half (53 percent) of the adoptions in Alaska were Native, approximately 3.4 times the percentage of Natives in the Alaska population. Whites constitute only 23 percent of the adoptions, although the large majority of Alaska's population is White.
With limited support from the Bureau of Indian Affairs, the Indian Child Welfare Act has been implemented in Alaska and has assisted IRA and traditional councils to intervene in foster placements and adoptions. However, during the last year funding for Indian Child Welfare Act grants has been cut drastically and the Bureau of Indian Affairs has recently proposed that funding be terminated altogether. In Alaska, the results of such unnecessary and untimely cuts could be disastrous since without the Bureau's support there is practically no funding available at all for Indian Child Welfare Act staff to be retained. The thrust of this important program has been the development of activities that are designed to reduce child abuse, offering training in parenting skills and working with troubled families often intervening in cases of a parent's substance abuse before violence erupts.
The Commission strongly opposes both the present reduction in federal funding for Indian Child Welfare Act grants and any plans for the eradication of that important program. The Commission recommends that funding be reinstated to the 1993 level. Further assistance to tribes and tribal organizations in their efforts to eliminate child abuse and its consequences among Alaska Native people should be offered.
The Commission recommends that all agencies handling cases of child neglect and/or child abuse share data. Roles and responsibility, especially between the Division of Family and Youth Services, the judiciary, Indian Health Service, regional health corporations and other tribal contractors, and federally recognized IRA and traditional councils need to be clarified. All agencies must renew their efforts to eliminate these tragic instances of child abuse among Alaska Natives.
C. A Summary of the Data
Several factors must be considered in summarizing data presented thus far. Information has been gathered from multiple sources, including small-sample research studies and extrapolations of large data bases maintained by the State of Alaska. The topics chosen for mention here were selected more for their having data available than they were as indicators of the most severe problems facing Alaska Natives. Exceptions include water-sewer issues and substance abuse, issues that stand out in any review of Alaska Native health and have repeatedly been brought to the attention of the state and federal governments. Topics of discussion are neither all inclusive nor exclusive. They have not been included here simply because they demonstrate the negative health status of Alaska Natives to the exclusion of other data that showed, for a particular indicator, that Alaska Natives had superior health. The Commission included every potential health problem for which information was available and accessible, and the only health issue that showed a lower incidence rate for Alaska Natives than for some other non-Native sub-populations in Alaska was HIV/AIDS. For that disease, the data are based only on those who have been tested and, because there is no way to factor in the variables that would lead to an Alaska Native or a non-Native receiving a test, it is not possible to draw any conclusions about the under- or over-representation of Alaska Natives among those with HIV in the Alaska population as a whole.
The Commission concludes this review of health problems and health issues with one summary statement, which is that the municipal, state, and federal governments need to recognize that the health system is suffering from a dearth of consistent, comprehensive health status data. Until the absence of such a data base with continuous updates and public reports no less often than once every five years has been remedied, the situation will remain as it is today. It is suggested that, as an integral part of the new data base and processing system, "wellness indicators" (e.g., numbers of Native youth completing high school) also be incorporated to enable positive change to be measured directly.
The milieu in which the Commission makes its recommendations for a significant "overhaul" of the health care system for Alaska Natives, emphasizing health promotion and risk and disease prevention, is encompassed by the new federal administration's platform for change. Within this context, it would be an unprincipled decision on the part of governmental agencies charged with bits and pieces of the data-gathering effort not to develop a coordinated and refined statewide survey. As the Commission's findings and recommendations demonstrate, there is an urgency to the establishment of a health assessment and status data bank.
D. Population Growth Statistics: Alaska Natives in the Year 2000
Census data show the increases in the number of Alaska Natives in Alaska over the decades, an increase that is due to many factors. These are briefly reviewed here and establish the basis for some predictions about future increases in the Native population and their continuing migration into more urban areas of the state.
1. Fertility and Birth Rates
There are wide variations in birth rates between the different regions of Alaska, but altogether the rates are high. For example, in the NANA Region, the Native birth rate is 38.4 per 1,000 compared to the state's overall rate of 21.6 per 1,000 during the period from 1988 through 1990.76 The fertility rate for Alaska Native women has increased slightly over time, while the fertility rate for White Alaskans has decreased. As would be expected, the birth rates show similar trends. In 1987, the rate for Alaska Natives was 36.0 per 1,000 population compared to 18.6 per 1,000 population for White Alaskans.77
2. Increases in the Numbers of Urban Alaska Natives
Another trend warranting consideration is the migration of Alaska Natives from the rural villages to the urban centers of Alaska. Too often the public equates Alaska Native health problems and needs with rural health problems and needs. In fact, Alaska Natives residing in Anchorage, Fairbanks, Juneau, and other urban areas share most, if not all, of their rural relatives' health problems.
The population changes between 1980 and 1990 show the extent of the migration mentioned above. While the Native population in some regions, such as Ahtna, grew by a minimal amount (1.4%), the Municipality of Anchorage grew by 70 percent, and the Matanuska-Susitna Borough just north of Anchorage expanded by 182 percent.
Many Natives move to Anchorage in search of employment opportunities that they find don't exist once they arrive. The extent of stress created by this situation, combined with the loss of a sense of community and an introduction to anti-Native sentiments and discrimination that many have never experienced before, leads to family problems and behavioral health needs that have a character somewhat different from those found in the villages. The movement of Alaska Natives from the villages to the urban areas has increased over the last several years and, because of the problems that village families encounter once they arrive, there are remarkable increases in the numbers of homeless Alaska Natives in Anchorage and other urban areas.
Governments must be made aware of the physical and behavioral health needs of Natives who have chosen to relocate to the urban areas of the state. The Alaska Native Medical Center will have increased pressures placed on its service delivery systems as the population of Anchorage Natives grows.
Consistent with suggestions made by other groups, the Commission recommends approaches that the Alaska Area Native Health Service should implement to ensure accessible and available primary care for urban Native residents. Strategic planning on the part of the Alaska Area Native Health Service and the Alaska Native Medical Center should incorporate the population growth in Anchorage and the Matanuska-Susitna Valley. The feasibility of opening additional primary health clinics or centers both in downtown Anchorage to coincide with the relocation of the hospital to Tudor Road in 1996 and in the Matanuska-Susitna Valley to respond to the emerging need should be studied.
Another urgent problem is the continuing substance abuse among the Anchorage Alaska Native population. The visible alcohol problem has been a target of much talk and varied strategies "to solve the problem of the Fourth Avenue Natives" that go back into earlier decades.78 Unfortunately, the focus of those early strategies were oriented towards satisfying the profit-oriented needs of downtown merchants more than it was to help the Alaska Natives. The results of those misled strategies have produced negligible results. Though somewhat less visible than a decade ago, there are too many still suffering, at the Saint Francis Center and along many avenues and alleys in Anchorage.
Statistics from the Community Service Patrol consistently demonstrate the extent to which substance abuse is pervasive among the Alaska Native street population. "Blue Ribbon Commissions" and other task forces have been assembled to find solutions to the problems resulting from substance abuse among Alaska Natives in urban areas. The Alaska Area Native Health Service has contributed funds to implement different attempts to resolve the problem. Sleep-off centers have been built and detoxification programs expanded. But the problem has not been eliminated. The Commission contends that, as with programs to help improve the health status of Alaska Natives living in the rural areas of the state, programs in the urban centers must also focus on the community. To date, however, the sense of a "Native community" in Anchorage often called Alaska's largest village has been lacking and has hampered attempts to organize and implement such community-based ideas.
Even though the Native community of Anchorage is composed of many different cultural and tribal groups compared to more homogeneous village communities, if the goals are established to benefit all Alaska Natives, it should be possible to bring the different groups together. That this has been accomplished on a statewide level (e.g., the Alaska Inter-tribal Council, the Alaska Native Health Board, etc.) validates the objective and its ultimate accomplishment. The Commission recognizes the importance of this and the influence that community development processes among the Alaska Native residents of the urban centers will have on ensuring the success of health promotion and education programs. It is, therefore, recommended that the state, federal, and municipal governments combine their efforts and work more closely with existing Native groups, corporations, and agencies to support and engender the development and recognition of Native communities within Alaska's urban areas.
E. Problems in the System
1. Patient Travel
Numerous pleas have been made to the federal and state governments to provide relief of some sort for Alaska Natives who reside in isolated, rural parts of the state and must travel by airplane to their nearest Indian Health Service provider for any malady that cannot be remedied by the local Community Health Aide. In January 1991, the Alaska Native Health Board published Access to Care: Crisis for Alaska Natives, which detailed the depth and breadth of the problem that Alaska Natives face when they must travel to a "hub" or to Anchorage for necessary medical care. Reporting that "the patient is the most frequent source of payment for travel,"79 Access to Care projected the budget that would be needed both to ensure that rural Natives would have assistance for transportation to reach health care facilities when they were needed and to ensure that individuals would be better able to seek help early in the course of a disease than is now often the case, noting that a substantial proportion of those who were surveyed in the study had delayed seeking medical help because of lack of travel funds.
As a result of Access to Care, Congress authorized increased support for travel in the Indian Health Care Improvement Act, but the appropriations have not to date matched the authorization. The Commission asks Congress to respond to this great need.
The Commission also notes that if the entire health care system is effectively shifted toward primary prevention and if health education programs are significantly increased, along with the much-needed empowerment of the village communities to respond to their own needs, the demands for travel money (which, almost exclusively, is required for obtaining secondary and tertiary care) will decline. Thus, the recommendation incorporates a timely response to the immediate need for patient travel and the long-range projection that the occasions requiring such travel will diminish as the health care system and tribal governance move toward enhanced empowerment and health promotion.
2. Orientation of the System toward Secondary and Tertiary Care
A review of IHS 1993 program funding shows that of a total of about $114 million distributed in Alaska through P.L. 93-638 contracts, only $404,198 is dedicated to health education; this represents four-tenths of one percent of the support. Is it any wonder that there are so many obvious indications of the lack of appropriate health education and health promotion for Alaska Natives? Changing behavior requires both sufficient knowledge about good health and an attitude steeped in the acceptance of one's responsibility for acting on that knowledge. The evidence from funding allocations alone show that IHS cannot do its part to ensure that health education is taking place.
This has been brought to the attention of the Indian Health Service repeatedly. For example, the Alaska Native Health Board presented its position papers to the Indian Health Service at the tribal consultation meeting held in Sacramento in 1992 in which the board requested that "by [the year] 2002, 20 percent of funding will go towards addressing national preventable illness priorities, thereby reducing the drain on the overall cost of care."80 The Commission notes that if this objective were met, it would represent a five hundredfold increase in support for health education in Alaska. The Commission strongly endorses prior recommendations that the Public Health Service augment funding and support for health education and promotion programs.
Not only has the federal government been remiss in advancing health promotion programs, but the Alaska Department of Education has, it seems, failed to ensure proper health education throughout the state, permitting local school districts to decide, unilaterally, not to require health education classes for its students. The North Slope Borough offers a case in point. Recalling data reported earlier showing that 74 percent of the children of that Borough had (easily preventable) baby bottle tooth decay, which is 18.5 times higher than the rate in the Lower 48, it is remarkable that the Borough's School Board and administration have established a curriculum that permits high school students to avoid the sole health education course offered by taking a Physical Education class instead.
It is incumbent upon all levels of government and the entire educational system of the state to revisit the need for health education for all Alaska Natives: children, youth, adults, and elders. If the health status data presented do not decry the failure of the system to inform Natives of healthy choices, promote their making those choices, and engendering a communal commitment to good health through local empowerment, then no data can.
3. Federal Resource Allocation
Over the years, the Department of Health and Human Services has adopted and adapted an allocation methodology for distributing Congressional appropriations across the 12 Areas and then :across the Service Units within each Area (called the Service Unit Resource Allocation Methodology, or SURAM). A number of variables have been used in these formulations with the goal of devising a fair method, but the great diversity within the Indian Health Service system, the wide range of costs incurred to deliver the same service in different locations, and many other factors render any formula vulnerable to complaint from within one sector or another, and such has been the case for Alaska. The system now in place, known as the Health Services Priority System (HSPS), is similarly flawed, and the flaws have been brought to the attention of the Indian Health Service by Alaska tribal contractors, tribal leaders, and health boards for several years.
Requests for the federal government to change the HSPS have been made repeatedly by the Alaska Native Health Board. In 1990, Resolution No. 29, passed unanimously by the Alaska Caucus at the National Tribal/Indian Health Service Consultation Conference held in St. Paul, Minnesota, asked that the HSPS be revised, noting that it "is primarily influenced by population, largely ignoring other more important factors which determine true need for resources in a particular IHS Area, such as the absence of non-IHS health care resources, remoteness, and accurate measures of health status."81
The request to change the current system was repeated in Resolution No. 16 the following year. Although only the first step in remedying the situation, the Indian Health Service has formed a working group to study the problem. The Commission hopes that the group will solicit input from and listen to Alaska's tribes and contractors in evaluating the HSPS and devising revisions to that system that will better acknowledge the needs of Alaska Natives and result in a shift in funding priorities toward primary prevention.
The resource allocation used by the Indian Health Service is important because it drives the funding process and, thus, the programs. Only if the HSPS "rewards" successful health education and disease prevention programs with increased funding will the health care system become realigned toward the primary prevention end of the continuum. Twenty years ago health professionals made the same recommendations, which were invariably countered with the argument that one cannot possibly take money away from those who are sick and dying just to begin some prevention program or another. Yet had just that occurred 20 years ago, there would be far fewer sick and dying individuals today continuing to require extremely expensive forms of secondary and tertiary treatment. If only on a pilot basis in one segment of the Indian Health Service, the reformulation of funding needs to be made. The Commission offers that Alaska is the most appropriate place for a pilot project of this nature bemuse it ties in with the other part of the changes that need to occur here which center on community development and empowerment.
III. Confronting Hard Choices: Discussion & Recommendations
A. A Communal Problem: A Community-oriented Response
Justice Thomas Berger, who conducted many hearings in Alaska for the Alaska Native Review Commission, authored Village Journey in 1985 to report his findings of those hearings. Showing his immense compassion for and understanding of the health and behavioral health problems facing the Native people of the Arctic and sub-Arctic, Berger gave the keynote speech to the Eighth International Congress on Circumpolar Health held in Whitehorse, Yukon, in 1990. His insights, derived from visiting over 60 villages in Alaska and all of the northern villages in Canada, support and substantiate the perceptions of this Commission which visited, years later, many of the villages that Justice Berger had visited and heard the testimony of those who had also testified before him. The fact that little has changed for the better can be seen as indicting the processes of the past for their inherent shortcomings. Hopefully, this revelation will carve out a more effective means for creating change in the future.
Acknowledging that there have been reductions in some infectious diseases, they have "to some extent been replaced by new ones, less deadly but nonetheless debilitating," Mr. Berger offered an insightful explanation for the sad state of the northern Natives' health and attitude:
That has come about, if I may be permitted to say so, because we of European descent whose institutions have pervaded the whole earth, we decided that the Native people should adopt our religion and give up theirs. We decided they should be educated in our schools and not by their Elders and by their own people. We decided they should speak our languages and only our languages, not theirs. We decided they should learn about our history and not their own. We decided they should be integrated into our culture and that theirs should be regarded as a relic of the past. Those attitudes, sometimes well-intended, had a devastating effect on the peoples of the circumpolar region. I think I can safely say that the experience we have had here and I've been speaking of the policies adopted by Canada that the policies adopted by the United States are very, very similar.82
Justice Berger's perceptions of both the problems and some of their root causes help frame the Commission's recommendations calling for fundamental changes in the way the state and federal governments establish policy and introduce programs to "serve" the Alaska Native people. The following segment from Justice Berger's speech sets the stage for those recommendations:
The values of white people working on the frontier are often opposed to and inconsistent with the values that are imbedded in Native tradition in the villages and settlements in the north. The community life of Native people emphasizes sharing and cooperation. In the north, the Native community has a profound sense of its own permanence . . . The frontier that we know so well, on the other hand, encourages and indeed depends upon a footloose work force, mobile capital, and all their ideological concomitants. It is not any particular location that is important but the profitability of an area. Attachments are to reward, not to place, people, or communities. Individualism, uncertainty, and instability are part and parcel of the frontier.
It is by the expansion of the industrial system that we in metropolitan North America have thrived and prospered. But when you seek to reproduce Main Street here in the Arctic and sub-Arctic regions, you affect the complex links between the Native people and their past, their culturally preferred way of life, and their individual, familial, and political self respect. We should not be surprised to learn that the economic forces that have broken these vital links caused serious disorders, frustration, confusion, and indignation.83
Justice Berger went on to refer to the works of physicians and psychiatrists who have, over the years, grappled with the same kinds of health issues and the same indicators of health problems that Alaska Natives are grappling with now, as evidenced by the discussions and findings in this study. And, in his review of others' work and their conclusions, we begin to see a thread, perhaps, that may lead to positive recommendations for change.
Quoting Dr. Robert Evans, a professor of health economics at the University of British Columbia and Director of Population Health Programs for the Canadian Institute for Advanced Research, Justice Berger continued:
"Without looking at just disease, without looking at the medical labels that we put on all of these things, could I suggest one or two things that you might want to think about?" He [Dr. Evans) emphasized the importance of self-esteem, that it has much to do not only with mental health, but also the physical health of any community or any people. He said, "If we look at Japan today, we find rapid increases in health status. Life expectancy is increasing rapidly in Japan, and infant mortality is way below the Swedes."
. . . These health statistics are moving upward and that they now have an infant mortality way below the Swedes and getting better, it seems to be correlated with some kind of rapid increase in wealth, some kind of rapid sense of national coping ability, a general sense of feeling good about oneself.84
The importance of "self worth" and its relationship to health emerge from these and other sources:
Dr. Evans says that there is a lot of evidence to suggest it is not just a question of poor people who don't have enough to sustain life; it's a question of a gradient pattern which applies across the whole population and it's not just food maybe it isn't food at all. It is certainly not medical care. It's not just public health in the usual sense. We're not sure what it is, but whatever it is, it seems to be pretty important. [Evans] referred to a study done in the United Kingdom of civil servants. Now these people are all sitting behind a desk in London, and they're all cared for by the National Health Service. Dr. Evans asked, "What does the examination of their health status show?" And he said, "It showed that those who were administrators had better health than the people working for them, and the people working for them had better health than the people working for them. So you got down to the lowest grade of clerks and their health was the worst of all. I guess this means if you are in circumstances where you cant control your environment or the stress patterns come at you and you don't know how to deal with them and you dont have the means to deal with them and people beat on you all the time, that apparently is a good deal more destructive in a direct and physiological sense.", 85, 86
Thus, the overriding condition that appears to have the greatest influence on the health of a group is its ability to control its destiny, in a broad sense. If the group is powerless perceives itself to be powerless not-only is the mental health of its members lowered but the actual physical health declines as well.
No one who travels today in the Arctic and sub-Arctic can be unaware of the social pathology that disfigures northern life: family violence, alcoholism, and, most tragic of all, suicides by young people often in their early teens and twenties and usually males. I believe that these lamentable statistics are the tragic outcome of the policies that we pursued for so many years.
In the midst of this pathology, social workers, nurses, doctors, and counselors . . . do the best they can. The fact is, however, that the causes are not treatable by a short stay in a detoxification centre, by counseling, or by any conventional means. They stem from individual demoralization and the demoralization of whole communities. Too often in the past . . . the representatives of powerful social and economic institutions, the government administrators, and representatives of industry, missionaries and clergy, policemen, social workers, and teachers, supplemented by invasions of academic and commercial scientists in season, were united in their dismissal of Native languages, cultures, and traditions and in their condemnation of ways of life different from their own. Young Natives were taught to reject their own people, their own past, their own sense of identity. Young Natives were inadequately educated to enter a white, middle-class world that is in any case largely closed to them. They may feel cornered, frustrated, and hostile; and most often they have turned their violence inward against themselves. The fact is that the intrusion of large-scale frontier development among Native people, without consulting them, without being concerned about them, without enabling them to participate in any meaningful and constructive way, has led to the aggravation of the cluster of social pathologies so familiar in the north.
One of the causes is, I think, the loss of self-esteem, both individual and collective. It may be no exaggeration to speak of despair that has overwhelmed whole families and even whole villages. It seems to me that this point is integral to many of the social pathologies of northern people, and the problem must be faced if we are to develop a rational social policy for the future of the north.87
Solutions to the health problems of Alaska Natives lie, then, not simply in health care but more generally in empowerment and involvement of Alaska Native communities in the design, implementation, and control of their own programs subsistence, governance, education, employment, economic, social, and health that will enable them to regain control of their collective futures. Only by means of re-establishing community control and empowering local decision-making can the responsibility for ensuring healthy lifestyles be regained by the community; only through this process can the individual and the family be reached in any meaningful way that will turn the tide of deteriorating health status among Alaska Native people. In order to accomplish this, the Commission recommends that federal policy be established that will encourage the regional nonprofit corporations that now hold the P.L. 93-638 contracts to relinquish their control of those contracts and assist the villages in their respective regions to assume local control for and provision of health services.
This recommendation of the Commission stems from not only the previous research mentioned here but also the testimony of many individuals who came to hearings held around the state. The consistent themes, whether addressing subsistence, health, governance, or any other aspect of Native life, were those relating to self-determination, empowerment, and control at the village level. Only by establishing a valid and enduring sense of a Native community's ability to control its resources and many other aspects of its members' lives can self-esteem be regained, which can then be shared and enjoyed naturally and by traditional means by all individuals and families within that community.
The question is not whether this must be accomplished. It is, rather, how it can be accomplished. The Commission offers its recommendations for making systemic and systematic changes within the U.S. Department of Health and Human Services and the Alaska Department of Health and Social Services as well as many other agencies of government and Alaska Native organizations and corporations that will re-establish local control and, thereby, improve the self-esteem of the Native people, whether they are located in isolated rural villages or living in metropolitan Anchorage. These will set the "frame" for the picture that will include changes in the educational system, a fundamental re-orientation of the health provider system toward prevention, a shift in the fund allocation used by the Indian Health Service, a recognition on the part of the State of "tribal" (local) control on the part of the State, and the need, which is both overriding and technical, for a coordinated data system that will periodically collect data related to the actual health status and health needs of the Alaska Native people.
B. Knowledge, Attitude, and Behavior: Policy Implications
In the "science" of health programming and its evaluation, a widely accepted approach entails looking at three separate but interconnected phases in reaching individuals, families, and communities in order to reduce health problems and improve health status. They are "Knowledge, Attitude, and Behavior." In order to alter behavior, knowledge must be imparted and attitudes changed, after which behavioral change will likely follow. Without both appropriate information and a conducive attitude, however, it is doubtful that behavior will change without serious external pressures or restraints.
The health data that have been reviewed in the Commission's work have shown consistent unhealthy behavior on the part of many Alaska Natives, in the face of a health system that spends millions of dollars each year to improve health status and reverse the negative trends that continue to be reported throughout the Alaska Area Native Health Service. Questions have been raised in preceding pages whether the primary source of the health problems is the failure of the systems to educate Alaska Native people, the failure of Alaska Native people to act on the information that they have, or both? Any of these possible causes will explain the generally unhealthy status of Alaska Natives compared with the non-Native population of the state.
For almost 30 years, research has been conducted on the extent to which individuals believe that they are "in charge" of their futures in this case, their health or alternatively believe that it is largely out of their hands, either because it is up to fate or because others have and will continue to take care of them. This belief in control is not dichotomous but rather, it appears, is distributed across a continuum, and it may depend to a very large extent on the way one is raised.88
It is the position of the Commission that programs need to be executed by the Indian Health Service and all others who are involved in improving the health status of Alaska Natives for the purpose of reaching the young that they, themselves, hold the key to their future health. Far too many Alaska Natives presently believe that they do not have control over their futures. This belief has been conditioned over many decades of well-intended public health efforts that have, by and large, promoted the message that "we will take care of you." To reverse this will take a concentrated effort that must involve village empowerment on many different levels.
1. Endorsing the State of Alaska's Plans for Water and Sewer Programs
The Commission endorses the recommendations that have been made by the Alaska Sanitation Task Force.89 Briefly stated, these include the following:
Involving communities in the planning, design, and construction of their sanitation utilities;
Eliminating honey buckets by providing waste storage under homes and building boardwalks, driveways, etc., to provide vehicle access for hauling, and improving utility roads in approximately 100 communities for handling water, sewage, and solid waste;
Requiring minimum standards for in-home water use, including a minimum 200-gallon water storage tank for each home;
Expanding the Remote Maintenance Worker program to ensure certified, trained operators for all sanitation systems; and,
Modeling future programs after the local utility matching program established by the Northwest Arctic Borough and awarding direct grants only to those communities providing at least 10 percent of the total project costs (or equivalent in-kind services).
Although priorities should be established to help those villages first that are able and willing to help themselves, there is a residual responsibility to address the needs of villages that are, at present, incapable of helping themselves (e.g., insufficient economic activity for villages to afford support). It will be incumbent upon both the state and federal governments to assess that capability carefully in order to avoid either real or perceived favoritism in the allocation of new funds to develop water and sewer utilities. The involvement of village councils and the long-term commitment of the residents to participate in the monetary support of the system should be key to approval of the development.
2. Alcohol and Drug Abuse: The Family and Community
The pervasiveness of alcohol abuse, alcoholism, and drug abuse and addiction in the Alaska Native population is a contributing factor to many of the other health problems that have been reviewed. Substance abuse is both a symptom and a cause. It is a symptom of the sense of powerlessness and frustration that many Natives feel as a result of their culture and traditional way of life having been so quickly removed without being replaced with a viable alternative that protects roles and engenders pride. It is the cause, directly or indirectly, of other diseases, unintentional injury and death, and high-risk behavior.
Although it is estimated that over $15 million is spent in Alaska every year for services to substance abusers, there has not been an obvious reduction in the phenomenon. It is time for IHS, the Alaska Department of Health and Social Services, and others who provide funds for substance abuse prevention and treatment to conduct an outcome evaluation of the effectiveness of current programs and, when unsuccessful approaches are found, redirect funding to fill in the gaps in the treatment system. New and different methods to reduce the incidence and prevalence of substance abuse should also be implemented.
In acknowledgment of the fact that many years of study have repeatedly shown that in many instances Native drinking differs significantly from that of the chronic alcoholic even though the entire treatment system of the State of Alaska continues to be oriented toward that type of client the Commission asks the Alaska Department of Health and Social Services and the Alaska Area Native Health Service to join together and support research into the types of binge drinking that is common among Alaska Natives and to evaluate treatment approaches attuned to the needs of that type of client. The results of the study should be disseminated for the purposes of incorporating alternative techniques into existing treatment regimens. This recommendation is not intended to deflect the attention of the government from actively pursuing family- and community-oriented alternatives as well; rather its purpose is to encourage the expansion of options to turn the tide of this enormous problem for Alaska Native people.
It has become clear over the years that although the local option law has had a positive effect in some villages, in others the impact has been minimal, due either to a vacillating vote or to the continuing problem of bootlegging. The Commission feels that the most effective techniques result in the reduction of demand, and only if demand-reduction accompanies the interruption of supply will any long-lasting result be affected. Consistent with the orientation that the Commission has taken throughout its work, the emphasis in all substance abuse prevention and treatment efforts must be the community, and within the community, the family. Family-centered and family-life techniques that have been developed and implemented elsewhere have produced very positive results. Alkali Lake is the most widely known, and there are other models that have been shown to be highly successful elsewhere but have not yet been adopted in Alaska.
a. The Kakawis Centre. Located on Meares Island, which is a 15-minute boat ride from Vancouver Island, British Columbia, the Kakawis Family Development Centre emphasizes cultural and traditional teaching and values to Native families (eight at a time) who reside in their own apartments during their six-week stay at the Centre. As a highly successful alcohol treatment program, it deserves an in-depth study for possible adaptation in Alaska. The entire focus of the program is the family, representing the core to building a strong community. Sobriety issues are targeted early in the six-week program, followed by family healing and the development of healthy lifestyles.
The intention of the staff at Kakawis is to "walk with" families in their recovery rather than playing the role of "expert helper," which has become all too common in Alaska's approach to treatment. Intrusive methods are avoided, and clients are regularly reminded that they are responsible for their own process; the program is described as being a "time out of time," during which clients and staff come together for a healing journey. Each family bring to Kakawis its own unique blend of life experiences, abilities, beliefs, strengths, and aspirations. In short, the elements and processes needed to build a strong, healthy family are already there; the Kakawis staff help facilitate growth and reestablishment of strong Native values to bring and hold the family together.
Quoting from an extensive evaluation of the Kakawis Centre:
The strength of the program appears to lie in its flexibility and, particularly, in the strength of its counseling approach . . . allowing counselors to meet the needs of the people, rather than vice versa. It is not the goal of the program to change anyone, but rather to hold up a mirror from different angles so that a client has a fuller awareness and understanding of who he/she is and how he/she affects other people. The responsibility for any subsequent choices is given to the client, in much the same way that the early founders gave the responsibility for the development of Kakawis to the native leaders. The program at Kakawis supports the transfer of personal autonomy and freedom to the Native Indian peoples.90
Two years ago an attempt was made to develop a family residential program in Alaska, to be modeled fundamentally in the principles proven to be successful at the Kakawis Family Development Centre. Funding, though authorized by Congress, was never actually appropriated. The Commission offers a strong recommendation to the Alaska Department of Health and Social Services and to the Alaska Area Native Health Service to use existing funds to support the establishment of an Alaska Native Family Development Center, monitoring and evaluating its effectiveness over time for possible expansion. The failure of the current substance abuse treatment system in Alaska to improve the lives of Natives is glaring, and there is no acceptable excuse not to explore different approaches.
b. Half-way Houses and Continuum of Care. A second gap existing in the current treatment system is the insufficient number of half-way houses, the total absence of quarter-way houses, and weak aftercare opportunities, particularly to support those who have completed some form of treatment away from their home village and then returned to their previous living environment. As the state and federal funding agencies review the effectiveness of the current system, policymakers and program staff need to look toward shifting funds to fill this gap and to provide a true continuum of care.
The emphasis of the Commission's recommendations remains primary prevention and health promotion, but at the same time, for those who are in treatment now, effectiveness must be enhanced. Continuing to support the revolving doors that too many substance abuse treatment options become is not an effective use of limited funding. New strategies must be implemented. It is essential that half-way houses be established at the local level and significantly greater support for in-village aftercare be provided by both the Indian Health Service and the Alaska Department of Health and Social Services.
3. Preventing Suicide and Other Self-destructive Behavior
Following a study of suicide in Alaska conducted for the Alaska Senate Special Committee on Suicide Prevention in 1988, the Alaska State Legislature, at the urging of Senator Willie Hensley, appropriated funds to begin a new community-based suicide prevention program, administered by the Alaska Division of Mental Health and Developmental Disabilities. Founded on the principles and practices of community development, the program has empowered a number of villages to implement projects that they have designed locally, based on their own assessment of community strengths, weaknesses, problems, and visions. Starting with 48 projects in 1989, the program has grown to include 60 projects serving 63 communities in 1993. Of the original group of 48 grants, 25 (52%) programs are still functioning. There are emerging indications that these projects are, in fact, resulting in positive change in the communities.
A recent evaluation of the program has found that village projects serve as catalysts to advance other important community-based responses to self-destructive behavior. These include the development of crisis intervention teams, establishment of support groups, and organization of local action groups. Many of the projects have also brought young people together with elders, focusing on traditional crafts and other cultural activities that lead to restrengthening Native values and building stronger communities. As a group, the communities that have implemented their own suicide prevention projects with state funding from this program have shown a 51 percent drop in suicide.
The essence of the approach chosen by the state in the community-based suicide prevention program is dramatically different from other state-funded behavioral health programs which uniformly strive to put into place replications of existing community mental health centers and intermediate care facilities. Not only are communities encouraged to develop their own projects and then empowered to implement them with state funding, but the program offers community development specialists who help communities formulate their plans and express them in proposals. This minimizes competition and practically removes the instances of well-intending communities failing to receive funds due to some technical problem with their proposal. The Commission recommends that the program stand as the model for the development of additional government-supported endeavors, upholding its goal of empowering communities to design, implement, and be responsible for their own creative solutions.
4. Resolving the Need for Better Data
Information necessary for governments to make informed decisions about reforming the health care system for Alaska Natives and to enable future evaluations of change, including those changes recommended by the Commission, is lacking. The Commission recommends establishment of a coordinated data system integrating the efforts of IHS, the Centers for Disease Control and Prevention, the State of Alaska, the Veterans Administration, Native health corporations, and all other agencies involved in gathering data related to the health of Alaska Natives.91 Rather than create a new office for this purpose, the duties to develop and maintain this data clearinghouse should be assigned to the Alaska Area Native Health Service's Division of Planning, Evaluation, and Health Statistics or the Office of Epidemiology within the Alaska Department of Health and Social Services. Alternatively, if the 1992 amendments to the Indian Health Care Improvement Act are fully implemented and new Epidemiology Centers are established in Alaska, these could consolidate data systems at the Service Unit level.
The Commission recommends that funds currently spent on the diversified data gathering that now occurs be focused to support a comprehensive statewide health-needs and status-evaluation survey of Alaska Natives. The survey should include behavioral-health risk assessment information and wellness indicators to provide direction to the new health promotion and disease/risk reduction programs recommended by the Commission. The study should be designed by health statisticians and providers who are already involved in such data collection, but it should also include the input of and consultation with Alaska Native residents of both urban and rural areas to ensure meaningful results.
The Commission recommends that this new system be put into place as soon as possible and that a report be published no later than October 1995 presenting the results of the statewide health-needs and status-evaluation survey of Alaska Natives.
5. Shifting Resource Allocation toward Primary Prevention
As a result of the foregoing recommendation, reliable information will be available to both state and federal agencies. They can then look not only at the demands for treatment, but, more importantly, at the needs for services through the continuum of health care that includes prevention, intervention, treatment, and rehabilitation. The new system will avail itself to the Alaska Area Native Health Service and to the Indian Health Service headquarters as a means to revise or replace the Health Services Priority System (HSPS). The HSPS favors those who are already sick and those who care for them, as opposed to offering incentives to those who are successful at implementing primary prevention. The use of "YPLLs" (Years of Productive Life Lost) offers a case in point. At the present time, the HSPS is weighted to reward (by increasing the proportional share of funds) Areas and Service Units that have a high YPLL, while the Areas and Service Units that have excelled at establishing health promotion, early diagnosis, intervention, and the other kinds of services resulting in a lowering of their YPLL are effectively penalized by their funds being taken away and allocated to high YPLL Areas and Service Units.
With the implementation of the Commission's recommendations, much of the residual programmatic priority to fund the most unhealthy by taking from those who are best maintaining their health will be reversed over time. This is consistent with the finding by the Commission that educating and influencing attitudes about health are the two most important goals that government policymakers can set for the next five years.
The Commission's recommended data systems and periodic health needs and status surveys should be correlated to these recommendations to shift the funding from secondary and tertiary care to primary prevention. The IHS resource allocation methodology should be tied to the data system in such a way that the prevention of disease and health problems will elicit increased funding. The present system artificially pushes the money toward the secondary and tertiary end of the continuum because the people who are at the more serious end of health disability are the costliest to care for. By adjusting the system to weigh the need for financial resources in such a way that preventing disease and behavioral health problems is more important than serving those who are already sick, it will be possible to strengthen self-determined positive health behavior without irrevocably removing funds from the treatment end of the continuum.
This recommendation is coupled to the earlier request that Congress increase travel reimbursement for Alaska Natives in order to ensure that rural residents are able to heed the early signs of illness and participate in the re-oriented health system. The recommendation also depends on enhancing the capability of the Indian Health Service to make effective and timely diagnoses so that when Alaska Natives do seek help in response to early signs of illness, they will be rewarded with appropriate intervention and care in time to prevent more serious consequences.
6. Healthy Start for Alaska Native Children
A program instituted in 1985 in several Hawaiian hospitals that assesses each mother at the birth of her child for the risk of child neglect and abuse, assigns those scoring high on the risk-assessment tool to a group for whom home visits are offered (and, with rare exception, accepted). This program, known as the "Hawaii Model," was found to be extremely effective in practically eliminating instances of child neglect and abuse.92 It has evolved into the "Healthy Start" program which is now being advanced throughout the United States by the National Center for the Prevention of Child Abuse.
A modification of the Healthy Start program has recently been implemented by the North Slope Borough Department of Health and Social Services with the support of a grant from the U.S. Department of Health and Human Services. The modified Healthy Start program conducts the risk assessment at the time a woman first enters the health care system for pregnancy testing or any other event related to her pregnancy. At that point, women who score high on the risk assessment are encouraged to participate in the home-visitation program. With home visits continuing through the important pre-natal period, the birth of the child, and the first year of life, the consequences of substance use and abuse, poor nutrition, improper parenting, deficient hygiene, and a multitude of other possible inadequacies on the part of the parents are prevented or reversed. The approach is nonpunitive in orientation and steeped in the philosophy of "gentle" reaching, a practice attuned to the culture of the region.
The Healthy Start program, with modifications, will soon be implemented in Anchorage by Southcentral Foundation, the regional nonprofit health corporation operating under the tribal authority of the Cook Inlet Region, Inc., with partial support from Blue Cross through the Catholic Social Services. The Commission recommends that if the evaluation of these programs reveals an improvement in the health and welfare of Alaska Native infants and children and a strengthening of the family, the Healthy Start program should be implemented statewide. Given the high rates of FAS and FAE, child neglect and abuse, and the numerous other problems reviewed previously, the failure to implement a program such as this could not be easily justified. The orientation of the Commission's recommendations have consistently aimed at primary prevention and helping families and communities learn to take control of their own health destinies. Starting this effort even before the next generation of Alaska Natives is born will help reverse the negative health status and trends that the Commission has repeatedly encountered in its work.
7. Support for the Community Health Aide Program
The Community Health Aide Program (CHAP) is unique to Alaska, extending primary care to Alaska Natives living in isolated rural villages which, with rare exception, have no other local health care available. Community Health Aides (CHAS) are employed by regional Native non-profit corporations or other tribal contractors under P.L. 93-638. In many villages there is a single CRA, and that one individual is effectively on call 24 hours a day for every day that she/he is there. Medical supervision is provided by the regional health corporation or the Indian Health Service, and the duties and responsibilities of the typical CHA are diverse and demanding. The value of the CHA program to Alaska Natives is immeasurable. Quoting from Alaska Community Health Aide Program in Crisis, prepared by the Alaska Native Health Board:
The CHAs have become an indispensable, important component of health care for rural Alaska Natives. They [CHAsl ensure that basic primary care services are available, accessible, continuous, acceptable to the population, and cost effective. Although little known, the CHAP is one of the most successful models of integrated primary care in the world, particularly for regions or communities that are rural and remote.
The importance of this program cannot be over-estimated. In FY '87 the CHAs had 208,501 patient visits. For rural Alaska Natives the average cost of round-trip transportation for a visit with the nearest physician is $175.00. Since the majority of patients exist below the federal poverty level, without the CHA many Alaska Natives would not have access to health care.93
In FY 1992, the number of Community Health Aide patient visits had increased to 263,320, representing an increase of 26.3 percent in only five years. 94
The Commission asks that Congress and the Clinton Administration recognize the critically important role that Community Health Aides have in the provision of primary care in Alaska and safeguard the continued funding for this program, increasing wages over time to ensure the continuity of the program and reduce turn-over among CHAs. The Commission also asks that the State of Alaska not only continue its involvement in the program by providing training funds and other support, but also that it seek to coordinate and strengthen additional training opportunities for CHAs.
At the same time, the Commission urges that CHAs consider the importance of their positions within the Native community and demonstrate healthy lifestyles. If CHAs are known to smoke or use alcohol or engage in other unhealthy behavior, they are, in effect, making a statement to the rest of the community, a statement which is, by appearance, endorsed by their regional nonprofit corporation and the Indian Health Service from which the funds originate to support them. An awareness of the important role models that they offer should be an integral part of their work. Consistent with the fundamental mission of "public health," the Commission encourages all Alaska Natives and those who work for and with Alaska Natives to strive to engage in healthy lifestyles and to demonstrate to everyone else in the statewide Alaska Native community that a return to harmony with oneself, one's family, and one's community, however large, begins with small steps and small choices. By accepting the responsibility for those choices and acting accordingly, each of us can make a change and, at the same time, instruct the younger members of our society, setting examples of healthy behavior and the positive consequences that result.
D. Concluding Comments
The Commission concludes this section by stressing the fundamental recommendations made in the preceding pages. First, the entire health care system for Alaska Natives must be re-oriented to emphasize primary prevention. Although it is inevitable that there will be stresses for awhile, the shift to primary prevention must occur now. For too many years, health providers have acknowledged the importance of this change but avoided it because it would take funds from those who are sick. Through strategic planning for the future health care of Alaska Natives, it will be possible to strike a phased compromise with scheduled reductions, over time, in funds available for secondary and tertiary care accompanying increases in health education, health promotion, and disease and risk reduction.
Second, every primary prevention program must concentrate on families and communities, not on individuals. Consistent with Alaska Native traditions and the incredible survival that the tribal groups of Alaska embody, harmony within the community is predominant. From prehistoric days, each group has had its own way of living and adjusting to its climate and harvest, but in recent years the age-old ways have fallen to more modern habits advertised on television and encouraged by non-Native residents who often have held influential positions. In order to reverse the negative trends that have begun to characterize Alaska Native health, communities must change. They must be empowered to do so free of burdensome programs that seek to do that for them.
Third, the need for a comprehensive data system that gathers and maintains health status data for Alaska Natives, including a periodic statewide health needs assessment and other problem-specific components, has been stressed. This is a long-acknowledged, fundamental need of the health care system for Alaska Natives. It is time now for all agencies to break down their respective barriers and begin work on building the system which should be established no later than October 1995. The importance of this recommendation is far reaching: not only will information be available to all health providers for ensuring that services are meeting the needs of the community, but data will be readily available to measure the consequences and effectiveness of changes in the health care system as well.
Many other recommendations can be found in the preceding pages. It is the hope of the Commission that readers will realize the critical nature of these recommendations and the urgency that exists in their implementation. The trends in the health status of Alaska Natives though based on limited data are clear, and they point to a deterioration that cannot be absorbed by this minority of Alaska's current population. To honor the integrity of the cultural groups of Alaska and to prevent the eradication of Alaska's indigenous people, all those who are involved in the provision of health care must act in a consolidated and coordinated way. The communities themselves must, of course, act as well for it is only within the families and communities that change will ever be realized and the future secured for a healthy next generation of Alaska Native people.