Part 2: Doctors find a way to bridge the cultural gap

SPECIAL REPORT - PART 2
Doctors find a way to bridge cultural gap

Mark Henle/The Arizona Republic

Dr. James Galloway talks with Thomas Tsosie about the serious condition of his heart during an appointment at the hospital in Chinle. An echocardiogram showed that his heart was pumping about 10 percent of the blood it collected.

By Judy Nichols
The Arizona Republic
July 21, 2002

TUCSON - Albert Bighorse is lying on the operating table, his eyes taped shut, a machine breathing for him, another circulating his blood. His chest has been cut open. Inside, his heart lies gray and motionless.

Dr. Jack Copeland's gloved hands are in the chest cavity, gently positioning a vein from Bighorse's leg. The vein, speckled with black where tiny offshoots have been cauterized, will serve as a new route for blood, bypassing blocked veins.

The remarkable meeting of these two men, one a traditional Navajo rancher and medicine man from one of the most isolated parts of the United States, the other an internationally renowned heart surgeon, is the result of the Native American Cardiology Program, a partnership of government, university and private sources.

The program is the lifework of Dr. James Galloway, who saw the explosion of heart disease in Native Americans and found a creative way to help.

Galloway joined the Indian Health Service in the early 1980s as an internist working with the Hopi and White Mountain Apache tribes. For decades, he and others had been told that Native Americans were immune from heart disease, and even into the 1970s the incidence was low. But in the '80s, Galloway saw the beginnings of an epidemic fueled by diabetes, obesity and high blood pressure.

Although heart disease was declining in other populations through diet, exercise and aggressive treatment of high cholesterol and high blood pressure, it was on the rise in Native American populations, only recently exposed to fast foods, high-sugar sodas and sedentary lifestyles.

Some heart disease was hard to detect because diabetes, another epidemic among Native Americans, affects the nervous system, masking the pain normally caused by heart problems.

The Indian Health Service wasn't ready for the onslaught.

"When they started seeing heart disease, they referred it to the private sector," Galloway said. "But there were deficiencies."

It was expensive. Sometimes unnecessary tests and treatments were ordered. There was no continuity of care. If a patient was sent to Phoenix for care, the doctor back home often didn't know what had been done.

"Sometimes we didn't even know if someone had a pacemaker put in," Galloway said. "There would be no discharge summaries, and if the patient spoke only Navajo, they often didn't know exactly what had been done because there was no interpreter. There was no long-term vision, no cultural sensitivity, no prevention activities."

So Galloway decided to change things.

Solution in partnership

Galloway went back to school, to the University of Arizona, to specialize in cardiology.

As he was finishing his studies, he proposed a partnership among the Indian Health Service and the University of Arizona Medical Center, a teaching hospital, and its non-profit Sarver Heart Center.

The result is the Native American Cardiology Program, housed at the Medical Center since 1992. Today, it has four cardiologists, two nurse practitioners, two nurses, two translators and one traditional healer. It has a budget of about $1.5 million, about half of which comes through the Indian Health Service. The rest is paid by the other partners. The program serves nearly 500,000 Native Americans at the center in Tucson and through "house calls" to 38 hospitals and clinics in Arizona, Nevada, Utah, New Mexico and California.

Galloway is setting up a second site for the program at the Flagstaff Medical Center to better serve patients in the northern part of the state.

The team in Tucson performs more than 200 bypasses a year and thousands of cardiac catheterizations, echocardiograms and stress tests. Doctors have done eight heart transplants. The program charges private insurance or Medicare or Medicaid, when applicable.

Long journey

For Bighorse, the journey began in Cameron, about 40 miles north of Flagstaff on the Navajo Reservation, where he has cattle and horses. Bighorse, who has been a dancer in Navajo healing ceremonies, began suffering shortness of breath, coughing and fatigue. Traditional ways no longer were helping him, he said.

Doctors in Tuba City referred him to the cardiology program in Tucson, where he underwent a cardiac catheterization, in which dye is injected into the veins of the heart. It revealed blockages.

Bighorse speaks only Navajo, and Phyllis Sanderson, the program's translator, helped him understand what was going on.

"Navajos have hand tremblers and crystal gazers," Sanderson said. "I tell them the White doctors use different things for diagnosis. The EKG is like a hand trembler, the large crystal is a catheterization and the small crystal is the echocardiogram. Then they understand that nothing will be done until the doctors decide what's wrong."

She tells them the treatments are like the ceremonies and prayers, actions taken to heal.

The translations are crucial, said Dr. Eric Brody, a cardiologist with the program.

"In other places, sometimes patients don't get procedures because they don't understand what's going on and don't give their consent," Brody said. "When they have someone like Phyllis explain things to them, there is no resistance to care or recommendations."

Bighorse said he wants to get better to teach his sons and grandsons and other boys from his community how to handle livestock.

"I'd like to take care of my sheep," he said. "My wife has been doing that. There are horses and cattle that need to be rounded up, branded and castrated. I want to be useful around the house. Right now, I can't walk far or carry a bucket of water or chop wood."

Carol Locust, the traditional healer, walks with Bighorse to the first floor, where nurses wait to prepare him for surgery. Locust says prayers in her native Cherokee language, and uses items recognized by many tribes like eagle feathers, cedar and tobacco to give a blessing before surgery.

Earlier, Copeland, known for using the first artificial heart to keep a patient alive until transplant, reviewed films of Bighorse's heart. In a small notebook, Copeland draws the heart and its spidery vessels, marking blockages with tiny Xs to help him remember which portions to bypass.

Soon, Bighorse is on the table, his heart slowed by cold, saline water, then stopped altogether, the blood routed to the machine.

Heart failure

Edward Setalla, 60, a Hopi from Keams Canyon on the Hopi Reservation in the northeastern corner of Arizona, had the same surgery in 2000. He'd had a cardiac arrest two decades earlier while working as a painter. Earlier this month he was back with a potassium overdose and fatigue.

Setalla said he didn't know how serious his heart problem was when he went to see Galloway in Flagstaff two years ago.

"He had me walk on the treadmill for five minutes," Setalla said. "Then he said, 'You flunked.' He had me lie down on the bed. My wife came in and asked if we could go get breakfast. Dr. Galloway said, 'That's as far as he's going.' "

Setalla's grandfather was a Hopi medicine man, and Setalla said he learned the Hopi religious ways and dances, but gave it up seven years ago when he became a Christian.

"I put my faith in God," he said.

Tsosie Bedoni, 73, of Chinle near Canyon de Chelly on the Navajo Reservation, had a valve replacement and a pacemaker installed.

"I was digging postholes with a pitchfork, and I couldn't finish," Bedoni said. "They cut a big incision in my chest and put a device on my left shoulder."

Despite being told to take it easy, he was back on his horse in two days, said his niece, Ella Singer.

Bedoni sheepishly admits the transgression, but said he "misunderstood."

A mother, daughter

Sanderson said she sometimes has influence because of her relationship to patients through the Navajo clan system.

Bedoni's father is Bitter Water Clan, the same as Sanderson's mother. So others from that clan are parents to him.

"To him I am like a mother," Sanderson says. "He listens to what I say."

Bighorse also is related to Sanderson through the Towering House Clan, the same as Sanderson's father. So, to him she is like a daughter.

The night before his surgery, he didn't want to sleep in a hotel.

"It was overwhelming to him," Sanderson said. "He couldn't register. He didn't know how to order meals, or request the shuttle in the morning. He said, 'Why don't you let me sleep in your sheepskin, daughter. I'm sure you have a corner you're not using.' "

Sanderson took him home, fed him. He told her he slept better than he had in weeks.

Strong, steady beat

In the operating room, at 6:05 p.m., Copeland has finished attaching the vein and has taken off the last clamp. Blood begins to flow through Bighorse's heart again.

Bathed in warm saline, it begins to beat, slowly and somewhat erratically at first, then a strong, steady beat.

Soon Bighorse will return home.

Galloway and Brody both say that, as tribes stress nutrition and exercise, and as doctors aggressively treat high cholesterol and high blood pressure, they expect to see great improvements and lower death rates.

Earlier this month, Galloway was on the Navajo Reservation, at the hospital in Chinle, where he examined Thomas Tsosie, 56, an electrician having trouble breathing, and swelling in his legs. Sometimes Tsosie's heart races and he wakes up sweating. An echocardiogram shows Tsosie's heart is pumping out only about 10 percent of the blood it collects, compared with about 60 percent in a healthy person. Galloway is worried about blockages in the veins, which can make the muscle weak, and tells Tsosie he should come to Tucson for a cardiac catheterization.

But Tsosie has used up all his sick leave and wonders if he can wait until he gets more in January.

"If you were my brother, I would have you go next week, not January" Galloway tells Tsosie.

"How bad is my heart?" Tsosie asks quietly, his head bowed.

"It is serious," Galloway says, his hand on Tsosie's back. "But there are things we can do."

Reach the reporter atjudy.nichols@arizonarepublic.comor (602) 444-8577.

Indian Health Care...separate/unequal

SPECIAL REPORT - PART 1
Indian health care: Separate, unequal

Photos by Mark Henle

Maxine Gould, a Navajo, and her one-month-old son, Isiah, listen while a public health nurse advises her on child care. The health system has decreased infant mortality but problems remain.

Federal care spending low, death rates high for tribes

By Judy Nichols
The Arizona Republic
April 14, 2002

Native Americans are dying at shocking rates. Of alcoholism, tuberculosis and diabetes. From accidents, suicide and homicide. At rates up to seven times higher than other Americans.

In Arizona, the average age at death for Whites is 72, compared with 55 for Native Americans. That's younger than for residents of Bangladesh.

The federal government, which promised in treaties to provide health care for Native Americans, spends less than half as much per tribal member as it does for programs covering other Americans. Private health plans spend more than twice as much per person.

"If this were happening in any other part of America, there would be Senate hearings, commissions," said Sergio Maldonado Sr., an Arapaho who is a program coordinator in the American Indian Studies program at Arizona State University.

They would be asking, 'Why are these people dying? Is it the water? The air? Anthrax? But because it's Arapaho, Sioux, the border towns around reservations, no one blinks an eye."

Maldonado said the lack of health care and differences in life span are a sign of continuing discrimination.

The leading causes of death for Native Americans are heart disease and cancer, the same as for other populations. But while those rates are closer to the norm, they are increasing as other populations are seeing improvements.

Native Americans die in accidents at more than three times the rate of other Americans, a fact so discouraging that federal officials say facetiously they wish for more disease.

"We'd love to have higher cancer rates," said Alan Dellapenna, deputy director of the Indian Health Service Office of Environmental Health and Engineering in Rockville, Md. "That would mean young people were living long enough to develop those kinds of diseases."

Promise made

In the early 1800s, the push for westward expansion resulted in war between the United States and many Native American tribes. Treaties, which stripped Native Americans of more than 400 million acres of ancestral lands, promised health care, as well as peace.

"When people say, 'You get free health care,' I say, 'Bear sweat,' " Maldonado said. "There's no 'Free.' Blood was spilled."

Today, the Indian Health Service, part of the U.S. Department of Health and Human Services, provides care for about 1.5 million Native Americans, living on or near reservations, some of the most remote and impoverished parts of the country.

But it has never been fully funded.

This year's budget is $3.2 billion. But according to a study conducted by a group of tribal and Indian health leaders, more than $7 billion annually would be needed to provide care similar to that other Americans receive. And $15 billion would be needed to add and improve facilities to make the system equal.

The Indian Health Service spends about $1,920 per person annually. That compares with more than $4,390 that private insurance budgets for most Americans' health plans, or the federal government's $3,859 for Medicaid, $5,600 for Medicare and more than $5,700 that veterans receive.

"Health care for Native people has never been a high priority nationally," said U.S. Sen. Ben Nighthorse Campbell, R-Colo., a Cheyenne chief and the only Native American in the Senate.

Campbell, a member of the Senate Committee on Indian Affairs, said most Americans feel a moral debt of gratitude to veterans, but do not understand the "unique legal, moral and historic relationship with Indian tribes."

Funding also has suffered because of the evolving misconception of the "rich Indian," the mistaken belief that Native Americans were raking in money first from land and oil, and now, from casinos, Campbell said.

"These headline-grabbing myths lead policymakers to conclude that most Native Americans do not need federal assistance for health care," Campbell said. "Of course, the opposite is true. The vast majority of Native Americans remain mired in poor economic conditions and continue to suffer from significant health problems."

Sen. Tom Daschle, D-S.D., whose state has some of the highest death rates for Native Americans, is so concerned that he plans to request an additional $4.4 billion for the Indian Health Service this year.

"While Congress debates how to allocate trillions of dollars, medical treatment for American Indians and Alaska Natives is being rationed," said Daschle, who called the situation inexcusable.

Dr. Craig Vanderwagen, chief medical officer for the health service, acknowledges that the system is seriously flawed.

"We don't feel good about the number of patients who need care who are rejected because their problem is not life-threatening," said Vanderwagen, based in Rockville, Md. "It's rationing. We hold them off until they're sick enough to meet our criteria. That's not a good way to practice medicine. It's not the way providers like to practice. And if I were an Indian tribal leader, I'd be frustrated."

But there is little or no support from others in Congress, said Dr. Stephen Kunitz, a professor of community and preventive medicine at the University of Rochester School of Medicine who worked for IHS and has studied it for many years.

"Virtually no one has an interest in funding it except the Indians themselves," Kunitz said.

The bulge was small at first. Just a bump, really. Sticking out near Felipe Robles' backbone. But it grew. It grew until it was the size of his fist. Until he had to struggle to get out of bed. Until he couldn't stand without his carved rattlesnake-head cane.

At first, doctors thought it was cancer. They were wrong.

The disease lodged in his spine, gnawing away at his vertebra, was something you expect to see in someone's lungs: tuberculosis.

The rate of TB in Native Americans is more than five times greater than for other Americans.

"I got it three years ago, when I was in jail," said Robles, 46, a Pima. "I was stuck in a cell for three days with a guy who was coughing a lot. I finally asked him what was wrong and he told me he had TB. I called the guards and they pulled me out of there, but I guess it was too late."

When the lump appeared, Robles went to a clinic in Guadalupe, but was turned away because he had no insurance. Eventually, he ended up at the Phoenix Indian Medical Center, where his name is on a growing list of patients who are closely monitored, watched each time they take their medication, for one year. Any less, and the TB might not die, might spread to someone else.

Robles can't work any more and may need surgery to stabilize his spine.

"I'm scared," Robles said. 'I'm afraid a slight move in the wrong direction and I'll be paralyzed from the waist down."

For now, he spends his days reading the Bible at the Phoenix halfway house where he lives.

"I'm not proud of my past," said Robles, who has been in prison for drug charges. "But I'm born-again now. I'm trying to do the right thing."

The first health care for Native Americans, provided by the U.S. Army, was designed to protect Whites from uncontrolled epidemics of smallpox, measles, diphtheria and malaria. The diseases, brought by Whites, devastated the Native populations, which never had been exposed, and threatened to boomerang into the ranks of the military and the settlers.

Eventually, health care was taken over by the Bureau of Indian Affairs, then moved to the U.S. Department of Health, Education and Welfare, now Health and Human Services.

Model of efficiency

The blueprint for the Indian Health Service is seen as a model of efficiency, studied by countries around the world. It offers cradle-to-grave care and one-stop shopping at its hospitals, where medical, dental, podiatry, psychiatry, optometry and even pharmacy services are available. And its public health arm builds water and sewer systems on far-flung reservations.

Through efforts to reduce infectious disease, increase immunizations and improve water system, the service greatly upgraded Native American health in the 1950s and '60s, significantly reducing infant mortality rates and deaths from gastrointestinal diseases.

The system has been less successful dealing with behavioral health problems like alcoholism, drug abuse and obesity.

Native Americans have the worst diabetes rates in the world, nearly four times greater than other Americans, and the worst alcoholism rates in the country, more than seven times greater.

"When you're dealing with these conditions - consuming food, alcohol, tobacco - you're dealing with people's beliefs, values and behaviors," said Kunitz,of the University of Rochester. "It's very hard for the health system to address these as effectively as they could address the contaminated water supply."

Some Native Americans say they must do more for themselves, eat right, exercise more, restore balance, all teachings of their elders.

"We have a moral imperative to take care of ourselves," said Maldonado, of ASU. "We can't point all the fingers at the Indian Health Service."

Inequalities exist in the system, sometimes for logical reasons, sometimes because of politics. For example, in Alaska, where it costs more to deliver care to remote Native villages accessible only by plane, IHS spends more than $6,080 per person annually for health care. But in the Kayenta area of the Navajo Nation, it spends only $766 per person.

The limited funding, isolated locations and lack of support staff all make it difficult to recruit and retain doctors, nurses, dentists, pharmacists and other health professionals.

Many in the system call the pay abysmal, offering examples like ophthalmologists, who make $100,000 at IHS, but can make twice that in private practice. And there are high vacancy rates - 17 percent for nurses at Phoenix Indian Medical Center.

"The people who are here are not here for the money," said Dr. Ken Steward, head of the Emergency Department at the Gallup Indian Medical Center. "They're hardworking, conscientious. Money is a secondary consideration."

The tight budget also forces the system to focus on primary care. Patients needing specialists, for things like heart operations, hand surgery and neurology, must be referred to doctors and hospitals in the private sector. The service has limited funds for this "contract" care, however, and the money runs out each year.

So the service often guarantees payment only for people who may die. Others must pay for the care themselves, or qualify for Medicare, Medicaid or other private insurance.

Lita Piffero quit worrying about her dignity long ago.

"I was down there at the clinic crying, literally begging for help," said Piffero, 48, who lives in Southern Bands, near Elko, Nev.

When Piffero's 14-year-old daughter hurt her foot in gym class in November, Piffero took her to the Indian Health Service clinic near Elko because there are no IHS hospitals in Nevada.

An X-ray revealed a deformity of the bone, Piffero said, and the doctor recommended magnetic resonance imaging, possibly surgery, services not available through the Indian Health Service. Piffero was told her daughter was being referred out, but that the service wouldn't pay for it. Piffero, who is unemployed, was told to apply for Medicaid.

"Medicaid took the full 45 days to decide," Piffero said. "We had to wait."

Her daughter limped through school on crutches.

When Piffero finally was approved for Medicaid, Piffero said the private doctor refused to do the MRI, saying he would lose money on a Medicaid patient. He referred them to Elko Hospital. Piffero said they still are waiting for an appointment. "I worry about what else they won't do because it's Medicaid," said Piffero, crying.

"She's only 14. She doesn't deserve to be treated any less than anyone else. This is her foot. I don't want her to be deformed.

"It just seems like unless you're on your deathbed, you can't go for services."

Her legs, which peek out from her traditional three-tiered calico skirt, are wrapped in cotton stockings, but they're still cold. She has high blood pressure and thyroid problems, but otherwise Nettie Yazzie, 92, who lives on the Navajo reservation, is remarkably healthy.

She gets B-12 shots from a public health nurse who visits her home, and occasionally sees a doctor for a check-up. But she attributes her longevity to eating lots of corn, the symbol of life for many Native Americans, and childhood visits to medicine men who taught her to make medicinal teas from herbs.

In fact, Native civilizations had extensive knowledge of diseases and medicines, knowledge that has contributed to Western medicine. And many still use a combination of Native and Western medicine.

As part of a move toward self-determination, many tribes are taking over their own health care, running their hospitals and clinics and deciding how to spend federal dollars.

More than 40 percent of the system now is run by tribes or the non-profit groups they have hired. In February, the Navajo Nation rejected a takeover of its $500 million system, but is considering running the programs in three small communities.

"IHS is going to continue to exist," the University of Rochester's Kunitz said. "What is unclear is whether it will increasingly be a pass-through program or continue to be a provider of services."

Either way, more money is needed.

Although the Native American population served by the Indian Health Service is growing by about 2 percent each year, and medical costs are rising at about 10 to 12 percent a year, the agency's budget has remained nearly flat, which means services fall farther and farther behind.

"If Congress in its wisdom, or malevolence, or thoughtlessness holds funding constant or at a 1 to 2 percent increase, things will get worse," Kunitz said.

Reach the reporter at mailto:judy.nichols@arizonarepublic.comor (602) 444-8577.

CheyFire