The Long Wait

t's a long drive from the capital of the Cherokee Nation in Tahlequah, Okla., to the rural Indian medical clinic in Nowata, in the northeast corner of the state. You pass through parched farmland and dusty towns that are little more than a couple of modest buildings at a crossroads. You can drive for dozens of miles without seeing a restaurant or a gas station or any public gathering place beyond a country church. Mim Dixon, the newly hired executive director of the Cherokee Health Services Division, made the trip last July to begin her assessment of the tribe's health services.

It was Dixon's first visit and she was eager to greet the staff and make a good impression. Instead, the impression was made on her. "Toilets weren't flushing, water wasn't running in the sinks," she recalls months later, still incredulous. After no small effort on her part-no one seemed to have any alcohol wipes or know where to find any-she located some soap and someone poured water from a jug over her hands so she could wash them before meeting with staff and patients.

"This is a medical facility. I just could not believe we were operating a clinic with no running water. Nobody would believe we're trying to do medicine under these circumstances-in America," she adds.

It was an instructive beginning to Dixon's tenure. Although the water outage turned out to be temporary, the long-standing problems she's since discovered have proved to be a lot more intractable. While most Americans worry about finding new doctors under their ever-changing health insurance plans, most American Indians worry about getting any care from any doctor. Despite a legal obligation to provide health care for American Indians on a par with other Americans, the U.S. government provides them inadequate medical attention at best.

Terry Barnes learned that the hard way. Last year, for the first time, the 45-year-old Cherokee turned to the government for what he had always believed was a promise of health care in times of need. His family tree service and land-clearing business doesn't provide health insurance, but he had always been able to rely on the insurance that came with his wife's job. After she decided to stay home to raise their five sons, including 3-year-old twins, he discovered just how limited the federal Indian health program really is.

Barnes has three bone spurs in his shoulder, pointing straight toward his rotator cuff, a situation he discovered about a year ago when severe pain drove him to seek help at the federal Indian hospital in Claremore, Okla. After performing X-rays, all the doctors could do was to prescribe painkillers and advise him to get the spurs removed-a procedure the hospital cannot perform. The spurs eventually will tear the rotator cuff in half, a serious injury that will require major surgery and likely have lasting health consequences for Barnes.

When the pain medicine interfered with his ability to work, doctors prescribed periodic shots of the steroid Cortisone to control Barnes' pain. It's a temporary solution. Barnes is optimistic that between the tribe and the Indian Health Service, the agency responsible for providing care, someone will find a way to pay for the care he needs. "I just don't know what else we'll do," he says. "Look, I've never even used the health care system before. I always figured it was for other people-you know, there are people here who really need it."

Promise of Care

Barnes is one of thousands of American Indians and Alaska Natives who are routinely denied health care that is by almost any measure critical to their well-being. "We have a totally unacceptable level of care when you look at what we're not doing," says Dixon. At a time of unprece- dented federal budget surpluses, a lack of funding has forced agency and tribal officials to ration health care to an extent unimaginable elsewhere. For instance, certain cancers often go untreated. Orthopedic needs go unmet. "We have people that are out of work because they need knee surgery. If they had knee surgery they could go back to work and be productive-but we can't provide it," Dixon says.

It wasn't supposed to be this way. The federal government is obligated by various treaties, laws and other agreements with tribes dating from 1787 to provide American Indians and Alaska Natives with health care. While such care would seem a small price for the land and resources those treaties guaranteed the United States, the promise never has been fully kept.

The Indian Health Service, the federal agency responsible for fulfilling the government's obligation since 1955, operates a health-care delivery system designed to reach about 1.5 million of the nation's 2.4 million Native Americans. In 1976, recognizing the inadequacy of health services for Indians, Congress passed the Indian Health Care Improvement Act (P.L. 93-638) to provide services "necessary to elevate the health status of American Indians and Alaska Natives to the highest possible level." Congress also encouraged tribes to participate in the planning and management of those services, believing that tribal involvement would improve the system's response to the needs of Indian people at the local level.

Yet very few uninsured Indians get anything approaching the level of care most Americans receive either through employer-sponsored private health insurance or government-sponsored plans like Medicare and Medicaid-a reality measured in mortality statistics compiled by the Indian Health Service. And while the health status of Indians has improved over the last 25 years, it falls far short of achieving parity with other Americans. According to IHS, the death rate for Indians with diabetes mellitus is 249 percent higher than the death rate for all other races in the United States; the death rate from tuberculosis is 533 percent higher; and the death rate from alcoholism is 627 percent higher.

At the root of this health status inequity is a critical funding shortage at IHS. With an annual budget that has hovered around $2 billion over the last decade, IHS runs about 40 hospitals and dozens of health centers and clinics, primarily in the Midwest, western states and Alaska. While the agency has seen modest budget increases over the last decade, those have been more than offset by cost-of-living adjustments in wages, inflation, increased drug costs, and other factors. According to a report by the National Indian Health Board, a nonprofit organization representing all 577 federally recognized tribes in the United States, IHS' actual purchasing power fell 18 percent between 1993 and 1998.

The agency's budget for 2001 is $2.6 billion. While that is a 9 percent increase over the 2000 budget, once inflation and personnel cost increases are factored in, actual spending remains essentially flat, says IHS spokeswoman Dianne Hammack.

A study released in June by the Henry J. Kaiser Family Foundation found that a majority of American Indians-80 percent-do not even have access to the limited care provided by the Indian Health Service. For those who do depend on IHS for care, Oklahoma is about the worst place they can live. Per capita annual funding for Indian health in IHS' Oklahoma Region is the lowest in the nation-$856 compared to $2,760 in Alaska, the best funded of the 12 regional jurisdictions. Oklahoma also happens to have the second largest Indian population in the United States-252,420 according to the 1990 census. Even the state's name is Indian, based on the Choctaw words Okla Homma, meaning "Red Man." Of the 37 federally recognized tribes in the state, the Cherokee Nation is the largest, with membership rolls topping 200,000 people, about half of whom live in the tribe's 14-county tribal jurisdiction service area in the northeastern corner of the state.

The Working Poor

Nobody appreciates the funding disparities at IHS more than Hickory Starr, director of the W.W. Hastings Indian Hospital in Tahlequah, about 170 miles east of Oklahoma City. The 60-bed acute care facility opened in 1984 to serve an annual outpatient population of about 90,000. Last year, the hospital recorded more than 220,000 outpatient visits, more than twice the load the facility is designed and staffed to manage. Hastings, with a staff of 420, including 40 doctors, handles more than 35,000 emergency room visits annually-a workload equal to that of many large urban hospitals. The hospital also has the seventh-busiest maternity ward in the state, delivering more than 1,000 babies a year.

Starr points to a recent e-mail from IHS headquarters announcing the promotion of a colleague. She is moving from a position as chief executive officer at an IHS hospital in Shiprock, N.M., to become director of the Alaska Native Medical Center. The New Mexico facility has a staff of 850 and serves an outpatient population of 50,000-twice the staff and one-quarter the patient load of Hastings. The Alaska medical center is a 150-bed hospital that handles more than 110,000 outpatient visits per year-with more than three times the staff and half the patient load of Hastings.

"You see the picture? How you get people to see that and understand that I don't know," he says. Starr is a blunt-spoken Cherokee with a passion for his job and a tendency to ruffle feathers within both IHS and the tribe. He grew up 30 miles south of Tahlequah on a stretch of road known as "Moonshine Highway." He attended an Indian school in northeast Oklahoma and worked for the governor on Indian issues before he eventually found his way to IHS in 1980. After stints with IHS in Oklahoma and at headquarters in Rockville, Md., Starr returned to Oklahoma in 1995 to run the Tahlequah hospital.

"We here in Oklahoma call it an Oklahoma problem. For some reason, the folks that make decisions apparently have the opinion that Indian people here in Oklahoma have access to the health care system here in Oklahoma better than they have it anywhere else. Well, it isn't true," Stars says. "On paper, it would appear that access is better. We've got more doctors and hospitals in Oklahoma [per capita than other states], but the reality is that 70 percent of the patients we serve here don't have any kind of insurance coverage at all. Even if you live next door to a hospital, it doesn't mean they will let you in the door."

While most of those who qualify for federal income assistance would also qualify for Medicaid insurance, most of the patients who walk through the doors of Hastings are working people who do not have any kind of insurance, private or otherwise. "And believe me, they cannot afford insurance," Starr says.

Constant Pain

Hastings' annual operating budget from IHS is about $17 million, a fraction of what the hospital needs to maintain what Starr considers a barely acceptable level of service. To offset declining purchasing power, the staff has become aggressive about billing and collecting from third-party insurers where patients are eligible for coverage. By investing about $700,000 thus far in new billing and cost-reporting technology, training staff and hiring insurance benefits experts, the hospital has been able to generate an addition $1 million a month. In 2001, Starr expects third-party revenues to match the hospital's IHS contribution. "We've gotten a lot better at what should have been done all along. We've become much more efficient," he says. But it's an ongoing battle, he adds. As health care costs continue to rise, health care providers and facilities, both public and private, aggressively compete for insured patients. Oklahoma officials recently mailed information to residents regarding a state managed-care program for the poor that falsely implied beneficiaries could not use providers in the Indian health system. IHS and tribal leaders must constantly work to keep patients informed of their options in the face of such misinformation, Starr says.

Many of those folks who end up at Hastings and Claremore Indian Hospital, the other IHS hospital in the Cherokee Nation, are like Mike Harrison. For three years now, Harrison says, his left shoulder has been "bothering him." In fact, he cannot lift his left arm high enough to comb his hair because of excruciating pain. Because of funding constraints, he was unable to get authorization from the Indian health care system to have diagnostic work done to determine the cause of his pain.

Then last year, his arm went completely numb. Given his worsening condition, his doctors were able to get approval for an MRI. Unfortunately for Harrison, the test and other subsequent diagnostic work only pointed to the need for more tests.

"The doctors think there's some nerve damage, but they'll need to do more tests to know what they can do about it," the soft-spoken Harrison says. The Indian health system won't pay for those tests, however, and Harrison's doctor, a contractor with the Indian Health Service, won't perform them without a deposit from Harrison of several hundred dollars. "I don't remember how much money it is," he says. "It didn't really matter because I don't have it." Harrison doesn't qualify for the federal Medicaid insurance program for the poor. He works as a laborer at a funeral home, although he says it is becoming increasingly difficult to work. Setting up headstones and lifting bodies is hard work under normal conditions, yet he continues to work as much as possible to support his wife and two daughters. While the numbness in his arm has subsided, he manages the constant pain with anti-inflammatory drugs provided through the Indian health system.

Dr. John Farris, director of the medical staff at Hastings, says funding shortfalls have forced the tribe and the hospital to prioritize treatment for patients. Adult orthopedic problems and kidney stones are only a couple of the conditions Hastings cannot afford to treat. In addition, patients don't always receive the newest, most effective medications because of the prohibitive cost of prescription drugs.

"People just don't get the care they would get elsewhere," Farris says. Nonetheless, he says the medical staff does an outstanding job under the circumstances. "Our staff are here because they want to be, because they want to serve Indian people. They could all go and work someplace else." Farris, a Cherokee himself, returned to Oklahoma four years ago to practice medicine with IHS after working for years at a Veterans Administration hospital in South Dakota. The biggest difference between practicing medicine at VA and practicing medicine at IHS, is that "at VA, I never had to tell a patient [who needed treatment] 'no,' " he says.

Health Crisis

The resource shortages that plague Indian health are plainly visible at the Nowata clinic, a small, cramped, modular facility in an industrial park. Doctors and nurses are crowded together in shared offices that double as patient examination rooms. Closets have been turned into offices; the small reception area doubles as the pharmacists' counseling area, with no room for privacy. The clinic's three doctors serve an active patient load of 8,600.

It's hard to pinpoint the most significant needs, says Chris Walker, the clinic administrator. Space is at a premium and not ideal at that. When a train roars down the track a couple hundred yards from the clinic, conversations pause until the noise subsides. Employees are overworked, lack resources and are poorly compensated for what they do. And the workload is growing. "We add about 80 new patients a month," Walker says. Nowata is one of six rural outpatient clinics operated by the tribe. By and large, the facilities are outdated, too small and inadequate. Shawn Terry, the administrator at a clinic in Salina, Okla., has taken to holding community meetings in an unfinished portion of his new clinic to quietly make the point that, finished or not, he needs the space.

Construction on the clinic stopped three years ago when funding ran out. As a result, the optometry office is housed in a trailer that, in addition to being inaccessible to wheelchairs, must be closed during high winds due to safety concerns.

The needs are so great within the Indian health system that providing basic patient care is a continuing struggle at most facilities. Services are in such demand, and the capacity to serve patients is so low, that too often, an individual's health has to deteriorate to an alarming degree to trigger care, according to those who work in the system. For instance, most diabetics (nearly 10 percent of the Cherokee Nation population has diabetes) must be on the verge of losing a limb, a kidney or their eyesight before the system kicks in to cover the needed care.

"If you had the staff and the funding you could take care of the situation so that it never gets to that point," says Starr. "If you could give all [diabetics] test strips, so they could test their glucose levels regularly, if you could give them the latest drugs, if you could set up diets and work with them, they might never reach that point of renal failure. But the reality we work with is that they have to reach a point where their health is going to just go totally down the drain."

'A Hungry Tiger'

Indian health care is not an entitlement program like Medicare or Medicaid, the federal health insurance programs for the elderly and the poor. IHS receives appropriated funds through the Interior Department, although it functions as an operating division within the Health and Human Services Department. IHS disburses funds to its facilities and sometimes directly to tribes, where tribes contract with the agency to operate facilities under tribal self-governance laws. Some tribes manage their own health care programs; other tribes rely entirely on IHS to manage their services and facilities.

The Cherokee Nation has a hybrid health-care system. IHS runs two hospitals in the Cherokee Nation's 7,000-square-mile tribal jurisdiction service area (Oklahoma tribes, for the most part, do not live on reservations), while the tribe operates six outpatient clinics and other health services, some of which are run out of the two IHS hospitals. Coordination between the clinics and hospitals is often inadequate, both tribal and federal officials say. Funding is so limited that the two entities tend to eye each other's spending programs suspiciously. The structure is such that the hospitals can blame the tribe for problems in the health care system and the tribe can blame the hospitals, says Farris.

Starr describes the relationship with the tribe as "living with a hungry tiger." Because under tribal self-determination laws passed since 1975 the tribe could take over the hospital at any time, the wariness among hospital staff is palpable.

"Our working experience has never been quite what both groups have expected or wanted it to be," Starr says. "The past director, I'm not sure what his agenda was, but he kept us in turmoil out here by threatening to take over the hospital time after time. That scares [employees] to death." Starr is wary, but optimistic the situation will improve with Dixon now heading up the health service for the tribe. While Starr is critical of some decisions the tribe has made regarding health care priorities, "The tribe has done what I would consider a very credible job" managing health care programs under the circumstances, he says. Health care providers on both sides desperately want to improve care, he says.

"Eventually, I imagine the tribe will take over operation of the hospital-and it probably should, at some point," he says. But he believes tribal officials have little appreciation for the complexity of hospital management. "There's a lot more involved than they realize. I'm not saying they shouldn't do it, I'm saying they should understand it."

Not all tribal officials and health care providers believe the tribe should take over management of the hospitals. Portia Kelley, director of behavior health services at Claremore Indian Hospital north of Tahlequah and a tribal employee, worries that if Congress is willing to severely underfund IHS hospitals, lawmakers would be even less generous with hospitals run by the tribes.

The corners Claremore is forced to cut because of underfunding would be unthinkable at a private hospital. Louella Standingwater, a registered nurse at Claremore, says she must be extremely conservative in her use of basic supplies, such as bandages, because there just aren't enough to go around.

The housekeeping staff was recently cut, which means some health care providers take out their own trash and clean their own offices, Kelley says. Because security is not affordable around the clock, maintenance employees are sometimes called upon when dangerous situations arise. Given the level of alcohol and drug abuse and related medical problems in the community, she says, security is a serious issue. She recalls a recent standoff with a knife-wielding patient in the emergency room. It happened when a security guard was on duty; nonetheless, it took staff from maintenance and housekeeping, along with the security guard and medical personnel, an hour and a half to deal with the situation.

Setting Priorities

Despite resource shortages at IHS and tribal facilities, the worst crisis in Indian health care is in contract health services-referrals for specialty care and medical procedures not available at IHS hospitals and tribal clinics.

The Cherokee Nation created a priority list for contract health services. On the outpatient priority list, for instance, there are 22 categories. However, funding is available for only the first six categories. Referrals in category No. 7-urgent diagnostic studies, initial consults and urgent follow-up visits ordered by direct-care providers-are reviewed for coverage on a case-by-case basis. Categories No. 8 through 22 are automatically denied, although cases will be reviewed if appealed. But the unfunded categories would hardly be considered elective in any other health system. Category No. 8, for example, is "Other Cancer Treatment," such as chemotherapy, surgical therapy, or radiation therapy that can't be performed at IHS hospitals.

Between Oct. 1, 1999, and Aug. 1, 2000, the tribe and IHS denied 1,484 referral requests in category No. 7, which includes bone scans, and diagnostic tests, such as biopsies for cancer. "We don't even track what we're not doing below this level, and that includes cancer care, among other things," says Dixon.

In response to an epidemic of diabetes among American Indians, a grant from IHS allowed the tribe to begin a diabetes treatment program in which patients willing to sign a contract pledging compliance with doctors' orders would receive specialized care-a level of care most private health insurers routinely provide, IHS health officials say. Participating patients receive glucose test strips to monitor their blood sugar levels, have access to the latest drugs and receive counseling for making changes in their diets and lifestyles.

But the demand has been so great, and the cost of drugs so high, that the tribe may be unable to continue the program, leaving nearly 4,000 patients in limbo. Also, there is no money left for prevention programs, which many believe are critical.

"Do we back out of the contract [with the patients] and not give people the drugs? Do we not put any more people under contract, even though the need is there? What do we do? We're faced with these horrible choices," Dixon says.

The tribe's inability to pay for emergency treatment at non-Indian hospitals also frustrates Dixon. She recounts the case of a woman who had a stroke while driving her car. An ambulance took the woman to the nearest hospital, as required by law in life-threatening cases. Unfortunately, it was a private hospital. While they treated the uninsured Indian woman, they also billed her for the treatment, which she cannot afford. It's the kind of story that's repeated over and over again in conversations with health care workers and the people who depend on them for care.

"There is not an HMO in this country that could get away with not paying for these services in an emergency. I'm talking about life-threatening emergencies. And I get these appeals, and I have to say, 'It's not on our priority list,'" says Dixon.

"I don't think Americans know this. I don't think members of Congress know this. I just don't think they would allow this to happen if they understood the level of suffering that's here," she says.

Chronic Underfunding

In 1998, IHS convened a group of 15 tribal representatives to come up with an acceptable methodology for measuring funding shortfalls and distributing resources more equitably. The Level of Need Funded Workgroup set out to determine what it would cost to give Indians the same health care services found in typical health insurance plans.

Using the Federal Employees Health Benefits plan as a benchmark, the workgroup found, after adjusting for differences in the populations, that the federal government would need to spend $3,391 per capita to achieve parity with health care received by the general U.S. population. A mainstream package of health care services for all 2.4 million American Indians and Alaska Natives would cost about $7.4 billion. The cost for providing a mainstream health-care package to IHS' 1.34 million population would cost about $4 billion--assuming about 25 percent of costs were paid by third-party payers, such as Medicare, Medicaid and private insurance. Overall, IHS provides less than 60 percent of the funding needed to put Indian health care on the same footing as the Federal Employees Health Benefits plan. Just to bring the neediest facilities, including those in the Oklahoma service area, up to the 60 percent level would cost $260 million. In response to the IHS study, Congress appropriated an additional $10 million in 2000 to be distributed to the most poorly funded facilities.

In the 2001 budget, Congress approved an additional $30 million to help boost the funding levels at the poorest facilities. While $30 million is a fraction of what IHS estimates it would need to bring parity for Indian health care, few are willing to complain too loudly.

"It is the best budget we've had in a number of years," says Cliff Wiggins, a senior operations research officer at IHS headquarters. "For the first time, we can look at some expanded services. Nevertheless, when you look at the need for more than a billion dollars, well the need is still there."

As a result of the budget increase, it appears that IHS will be able to slightly boost funding for contract health care as well, Wiggins says, although it's unclear how much of that increase will end up in Oklahoma. Any additional funds would be welcome, Dixon says. Beside her desk is a print she bought for her office when she moved in last summer. It depicts the infamous Trail of Tears-the tribe's forced march beginning in 1838 from its aboriginal lands in Georgia and South Carolina to Indian Territory, what is now northeast Oklahoma, during one of the coldest winters on record. Thousands of Indians, weakened by hunger and disease, died on the march, making it one of the ugliest chapters of American history.

Now when Dixon looks at the print, instead of seeing Indians walking the Trail of Tears, she sees all the people she's turning away from the health care system: "To me, it's another trail we've got going here."