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Three Tribes, a Dam and a Diabetes Epidemic

 

Herbert Wilson came to North Dakota's Fort Berthold Indian Reservation in 1954, to a tiny town called Elbowoods, tucked above the Missouri River in a bucolic patchwork of riverside willows, cottonwoods and fields. A Vermont-bred 33-year-old, fresh from Harvard and a tour as a WWII bombardier, Wilson was the new, sole doctor for the reservation's three tribes, which had spent the years since white colonization the same way they had spent the preceding millennia -- raising corn, beans and squash in the Missouri's fertile floodplain.

"Very few people were overweight," recalls Dr. Wilson. "There was no welfare, no commodity food, and did I mention there was no diabetes?"

But even as Wilson and his wife unloaded their four small children and cat from their 1946 Hudson sedan, the disease that has become the hallmark of the Native American health crisis was on its way. The recently constructed Garrison Dam would soon flood Elbowoods and seven other Native communities along a 30-mile stretch of the Missouri, ushering the resident Mandan, Hidatsa and Arikara people to high, barren ground and the end of their farming traditions. The move triggered unemployment, poverty, and a five-decade descent into obesity, hypertension, and diabetes, conditions that are linked to each other and to nutrition. Ironically, the flood would drown the only hospital the reservation has ever had.

Dams aren't the only way to destroy indigenous lifestyles. The health history of the Fort Berthold people differs from that of other tribes only in the details. After white settlement, Native Americans from California to New York were cut off from their land and their way of life. Like the Fort Berthold tribes, they became more sedentary, relied more on cheap food -- often from the federal government -- and received worse health care than any other group of people in the country. Nowadays, Indians suffer more diabetes than any other racial group. They are 2.2 times more likely to get it than non-Hispanic whites and three times more likely to die of it than non-Indians. A new $20-million clinic will open on Fort Berthold later this year, but it will take a lot more than that to turn the tide of the health crisis inundating this and other reservations.

Says one local,  "You see all these young people, and they're all sick, and you wonder, 'God, what's gonna happen to them in 10 more years?' "

Relations between the U.S. government and the people of Fort Berthold began harmoniously. The Mandan lived in villages with the Hidatsa, in lodges walled thick against raiders.

"We grew large gardens," says Marilyn Hudson, great-great granddaughter of Mandan chief Cherry Necklace and the tribes' ad hoc historian. "We had a very organized society, which was similar to the white European societies. There were systems of law and order, food distribution. ... I think it made the people here more compatible with Europeans because they were farmers."

When the Indian Wars began in the second half of the 1800s, the Mandan and Hidatsa -- along with the Arikara, with whom they allied in 1862 -- signed on as government scouts. In 1870, the land that the Three Affiliated Tribes had occupied for centuries was designated as the Fort Berthold Indian Reservation.

The people ran small farms, sent their children to school, attended church and took pride in serving in the United States armed forces. Women and children cultivated beans, potatoes, carrots and beets, storing them for winter, and harvested wild juneberries, chokecherries, buffalo berries and prairie turnips, the same fare they shared with Lewis and Clark in the long winter of 1805. The men used horses to sow corn and cut hay; families also raised cattle, pigs and chickens. "Almost everything grown in the garden was consumed by us and our livestock," remembers Hudson, 74. "The only thing we bought from the store was sugar, coffee, salt."

And then, in the mid-1940s, the U.S. government decided it needed a dam.

"Of all the variable things in creation," wrote the editor of the Sioux City Register in 1863, "the most uncertain are the actions of juries, the state of a woman's mind, and the condition of the Missouri River."

In 1943, the restive Missouri had jumped its banks three times, inundating Iowa and Nebraska and angering precisely the wrong person -- Col. Lewis Pick, the short-fused regional director of the Army Corps of Engineers. "As the floodwaters rose in the streets outside his offices, Pick jumped up on a desk and bellowed at his subordinates: 'I want to control the Missouri!' " wrote Paul VanDevelder in Coyote Warrior, a history of the Garrison Dam and its effect on the tribes.

President Franklin Roosevelt ordered Pick to hammer out a plan with the Bureau of Reclamation. It called for a series of dams on the Upper Missouri, with, at its center, a 200-mile-long reservoir. The new Lake Sakakawea would flood 436 of Fort Berthold's 531 homes, as well as every square foot of the enviable farmland tilled by the tribes.

The tribes fought back. When Pick, who was now a general, appeared at an Elbowoods hearing in 1946, Thomas Spotted Wolf, a rancher with a third-grade education and a full-feathered war bonnet, stood up and stuck his finger into Pick's face.

"You have come to destroy us!" he shouted, according to his grandson, Jim Bear. "If you look around in our town, we build schools, churches. ... We're becoming civilized! We're becoming acculturated! Isn't that what you white people wanted us to do? So we're doing that! And now you'll flood our homeland?"

But the government was determined to tame the Missouri, no matter the cost. VanDevelder reports that of the 800 square miles of rich bottomland lost to dams above Yankton, S.D., about three-quarters was Indian land.

In the end, the tribes accepted the U.S. government's offer of $5 million in exchange for their land. At the signing ceremony on May 20, 1948, in Washington, D.C., the bureaucrats were straight-faced. The suit-clad tribal chairman, George Gillette, stood just to the right of Interior Secretary Julius Krug, sobbing into his hand.

Most Elbowoods government offices, including the Bureau of Indian Affairs, moved their operations to the rolling, mostly treeless prairie, to the aptly named hamlet of New Town. Dr. Wilson set up shop on Main Street. Today, North Dakota's longest bridge stretches nearly a mile across the white-capped water of Lake Sakakawea toward Four Bears Village and a 17-year-old casino -- one reason reservation unemployment has dropped from an estimated 80 percent after the flood to about 30 percent today. Fort Berthold is on much firmer economic ground than many other High Plains reservations, although not nearly on a par with the rest of North Dakota, which enjoys the country's lowest unemployment rate at 4.2 percent. A rich oilfield was recently discovered under the reservation, and oil rigs now dot the landscape like oversized praying mantises. The boom has generated much-needed revenue for the tribe, supplemented by the casino and a 1993 settlement for dam-caused damages that provides $8 to $9 million annually to community programs. Still, for years people have complained that the federal government never made good on its promise to replace the flooded hospital at Elbowoods. And although the oil boom has brought money, it has also brought an increase in traffic deaths and social tension, along with environmental concerns so profound that some wonder if the reservation will be habitable in 20 years.

But that's getting ahead of the story.

Back in the mid-1950s, after the floodwaters covered his house, Thomas Spotted Wolf sat down on a piece of driftwood log. "He was singing a song, and he had tears coming down," says his grandson, Jim Bear. "I didn't have to ask him what was wrong. ... After that, my grandfather just went downhill. He didn't have anything to live for any more."

Marilyn Hudson's father, who had also poured his life into fighting the dam, died just a month short of his 58th birthday. Other tribal members seemed to wither away as their farms disappeared. "Our neighbor to the north, Judge Wolf, he would hold court right in his house," says Hudson. "He was very adamant -- 'I love this land, I will not leave this land.' And he didn't leave. He died. I'm thinking he wasn't any more than in his 50s."

"The lake forced us into a cash economy," says Leo Cummings, the tribal administrator of employment training. "A lot of people lost their lives in downtown New Town, lost their self-esteem and drank themselves to death." Some found low-paying government or service jobs. Others took the bus to distant cities like Los Angeles or Chicago as part of the Urban Indian Relocation Program.

In the early 1970s, less than 20 years after the creation of the lake, an Indian Health Service doctor named James Brosseau heard reports of diabetes on Fort Berthold and went to take a full inventory. He found 200 cases. "There were probably a lot more that were undiagnosed," he says. When he discovered similar outbreaks on other Northern Plains reservations, it reminded him of the smallpox epidemic that wiped out huge numbers of Indians in the early 1800s. "Diabetes is going to devastate the tribes," he recalls thinking. "It's going to be a long, painful death, not a quick one." He adds, "I'm even more concerned now. It hasn't improved. Rates have gotten worse."

To address the problem, Congress established the Indian Health Service Division of Diabetes in 1979. "By the late 1980s and 1990s, diabetes was a well-known epidemic among American Indians," says Charlene Avery, director of the IHS Office of Clinical and Preventive Services.

Virtually all of the people using tribal health facilities on Fort Berthold are Native American. They're either among the reservation's 4,556 Native residents or they live off the reservation and drive in for medical care. In 2008, the 18-74 year olds in this group had an obesity rate of just over 60 percent. In 2009, more than 13 percent of the people using the health system had diabetes, making it the single biggest diagnosis for the group and roughly twice the state average of 6.5 percent. Diabetes risk increases with age, and among people over 35, about 41 percent appear to be diabetic.

Almost all of the diabetes cases on Fort Berthold and beyond are Type 2, which usually develops in overweight adults who become resistant to their own insulin. Type 1 diabetes -- an autoimmune disease that typically begins in childhood and causes the body to produce insufficient insulin -- has stayed stable at about 5 percent nationwide, according to Brosseau. Insulin moves glucose, the body's basic fuel, from the bloodstream into cells so it can be used for energy. When sugar can't move into cells, it builds up in the blood, causing symptoms like weakness, impaired circulation and thirstiness. Its complications can include loss of vision or limbs, heart disease, diabetic coma, and kidney failure, which can be treated with dialysis.

Type 2 diabetes can be prevented or managed with regular activity and a low-fat diet with plenty of fruits and vegetables. "People don't get as much exercise as they used to," says Jared Eagle, 28, who grew up with a diabetic grandmother, grandfather and uncle and is the fitness director for the Fort Berthold diabetes program. "They don't ride bikes. Video games are huge. They do them at home, and there's an arcade at the casino. Kids get rides just down the block. Things like that really show."

Dialysis patients -- 95 percent of whom have diabetes -- have tripled in the last eight years, according to Stella Bergquist, an RN on Fort Berthold. Fourteen people are on the waiting list for the life-saving treatment. "We have 10 dialysis patients at a time, two shifts a day," says Bergquist. The tribe transports the extra patients off the reservation to Minot, 70 miles away, and beyond.

Set against the bleak statistical landscape of Native American health, the  upsurge in body weight and diabetes on Fort Berthold isn't unique, severe or even surprising. Nationwide, 16.3 percent of Native Americans are diagnosed with diabetes. Researchers first opened their eyes to the phenomenon back in 1963, when a group of them traveled to the Pima Reservation in Arizona looking for data on rheumatoid arthritis and stumbled upon an "extremely high rate of diabetes," according to The National Institute of Diabetes and Digestive and Kidney Diseases website. So NIDDK returned to study diabetes instead.

In 1900, there was perhaps one recorded case of diabetes among the Pima. In the 1920s and '30s, the Gila River sprouted dams and diversions to funnel water into growing cities like Phoenix. Without that water, the Pimas' diet -- for 2,000 years based on irrigated corn, beans and squash, as well as game and a huge variety of wild plants -- changed radically. Its fat content increased from 15 to as high as 40 percent. And the Pima got fat. Really fat. They are, in fact, among the fattest people in the world. Researchers theorized that there was a "thrifty gene" at work -- a tendency to put on weight easily that is often seen in populations that evolved amid feast and famine. This gene worked in their favor when they lived from hand-to-mouth, but once they became sedentary and ate processed fatty foods, they became prone to obesity and diabetes. In 2002, one-half of adult Pima Indians had the disease, according to the NIDDK.

Meanwhile, the Southern remnants of the Pima Tribe raise corn, beans and potatoes in the Sierra Madre south of the Mexican border. They are slim, their diabetes rate unremarkable.

In the 1930s, there were only five known diabetics among 25,000 hospital admissions at the Sage Memorial Hospital in Ganado, Ariz., on the Navajo Nation. By 1988, The Western Journal of Medicine declared, "The Navajo and most other Indian tribes are now experiencing a pandemic of Type 2 diabetes, related to diet and lifestyle changes, probably in the setting of a genetic predisposition."

There are other factors at work besides the "thrifty gene" and lifestyle changes. Diabetes rates correlate with poverty -- poor people eat unhealthy diets -- and roughly one-third of Native Americans live below the poverty level. Federal policies have also played a part, particularly the USDA commodities program, which for decades supplied low-income Native Americans with surplus food.

"People think fry bread is a traditional food," says Donald Warne, a Lakota with a medical degree from Stanford, a public health degree from Harvard and a long history of working on Native American health issues. "The origin of fry bread is the tribes trying to do the best that they can with commodity food -- flour, shortening."

On Fort Berthold, perhaps 40 percent of the people were on the commodity food program during the decades after the flood, according to Dr. Wilson, now a spry 90-year-old living in Bismarck with his wife of 66 years. Commodity canned meat was crowned with a white fat cap and "looked like they scraped it off the floor," while the canned fruit was "loaded with sugar," according to Charles "Red" Gates, who runs the commodity food program on the Standing Rock Indian Reservation, which straddles the border between North and South Dakota.

Gates recalls a 1990 hearing on Standing Rock, where cans of commodity meat were opened, prompting two attendees to run outside and throw up. Congressman Tony Hall of Ohio proclaimed, "I wouldn't feed this to my dog," and a Government Accountability Office investigation was launched on Fort Berthold and three other reservations. It found that "often the only vegetable available is canned green beans, the only fruit available is canned pineapple, and the only meat available is canned luncheon meat," adding that during the last week of the month, some families subsisted solely on macaroni, rice and cornmeal. The high starch content was believed to be "a major contributor to the prevalence of obesity on the reservation."

In 1993, Standing Rock hosted a pilot project to include fresh fruits and vegetables in the commodity food program -- 14 years after the IHS had launched its first diabetes program. These days, commodity food includes healthful fare, like whole-grain pasta, low-fat milk, avocados, nectarines and frozen bison. But low-income Native Americans can choose between commodities and food stamps, and on Standing Rock, Fort Berthold and beyond, younger people are trickling away from the former and signing up for the latter so they can buy convenience foods like chips and soda. Gates argues with them about their food choices. "They say, 'We don't have time to cook.'  I say, 'Make time! You've got a family!' I can see it in my grandchildren. They'll have something from Taco John's, or they'll have a soda."

Just over 10 percent of Fort Berthold's population -- some 600 people -- now receive commodity food, according to Lionel Chase, the reservation's acting director of the commodities program. Chase sees the same phenomenon Gates does on Standing Rock: Qualifying families opt for food stamps over commodities. The commodity warehouse in New Town is stocked with healthy food, but in the hall a woman speaks into her cellphone: "I'll make dinner," she says. "Hot dogs and cheese and chips."

The Indian Health Service is the agency left holding the basket in this crisis. Its mission is "to raise the physical, mental, social, and spiritual health of American Indians and Alaska Natives to the highest level," but it relies on a funding source that is hardly reliable -- the U.S. Congress. "We meet about 57 percent of the need, based on the current budget," says Michael Mahsetky, director of the IHS Congressional and Legislative Affairs Staff.

In 2010, the IHS spent $2,741 on medical care per user ($3,348 when construction costs are factored in). In comparison, recent figures reveal that the federal government spends about $5,841 per Medicaid enrollee, $7,154 per veteran, and $4,412 per federal prisoner. There's a longstanding joke that if a Native American is going to get sick, they'd better get sick before June, because the IHS runs out of its annual funding by summer.

The IHS operates the medical facilities on some reservations, but all of the tribes in Alaska and about half of the rest of the nation's reservations have become independent in recent years and are now using IHS funds to run their own clinics. Fort Berthold did this three years ago. Since then, it has received $18 million in services from the IHS, but has had to supplement that with an equal amount from tribal coffers. "We're not supposed to pay," says Tribal Chairman Tex Hall. "The U.S. government has a trust responsibility, a treaty obligation. I tell them, 'If you don't want to live up to that, you give back our land.' "

Dialysis and most other diabetes treatment happens at the Minne-Tohe clinic in Four Bears Village, a cobbled-together 10,000-square-foot compound across the street from the casino. It opened its doors some 40 years ago, replacing a series of leased facilities in New Town. Although it is the flagship facility of the five clinics on the reservation (the others are small, regional clinics visited by medical staff a couple times a week), it has few fans. Hours are short, and waits are long.

Two different IHS diabetes programs  -- one pushed by former Sen. Byron Dorgan, D, the other by former Republican Rep. Newt Gingrich -- pour a total of about $850,000 per year into diabetes prevention and treatment efforts on Fort Berthold. Dialysis is covered by Medicare. The two IHS diabetes programs on the reservation "significantly improve clinical intervention and prevention," says Diabetes Director Arne Sorenson, who, like some other enrolled tribal members, has a streak of Scandinavian blood. "We're losing the fight in terms of obesity and weight gain, but in spite of that we're ameliorating the quality of life for people who have diabetes." He's hopeful that by continuing to treat full-blown diabetics with medications that lower lipids and glucose, plus spreading the word about diet and exercise among the young, they can turn the tide against the disease. "If you're not an optimist in this field, you're gone," he says. Still, due to budget constraints, "we don't even get close to meeting 100 percent of our need."

Donald Warne puts it more sharply: "Every time there's a budget shortfall for the IHS, Indians die. The analogy I like to use is that it's like a car that is filled halfway with gas and it's supposed to get from point A to point B. And it runs out of gas halfway. And you get mad at the road, get mad at the car, get mad at the driver and everyone else except for the people who were supposed to fill the car with gas! In this case, it's Congress who is responsible, and every time Congress fails to appropriate enough money for the IHS, it's legislated genocide."

The IHS was funded at $4.05 billion for fiscal year 2010. Last month, a budget-slashing Congress pleasantly surprised some onlookers by increasing the agency's FY 2011 funding to $4.07 billion. President Obama has put in a budget request for $4.6 billion for FY 2012, an increase of $571.4 million, or 14 percent, over the FY 2010 funding level.

Barack Obama isn't the only supporter Native Americans have in D.C. Among the politicians who have stepped up was Byron Dorgan, who represented North Dakota in Congress for 30 years -- first in the House and then in the Senate -- before retiring at the end of 2010. His father, Emmett, worked as a horse wrangler on Fort Berthold before the flood. The elder Dorgan "always respected the Indian culture," says his son. "He impressed upon me that our country had not lived up to the treaties and promises made to the American Indians."

This contributed to one of the few threads of good luck strung between the tribes and the nation's Capitol, since the construction of the Garrison Dam. Along with the rest of the North Dakota congressional delegation -- Sen. Kent Conrad, D, and Rep. Earl Pomeroy, D (who lost his seat last November) -- Dorgan spent years listening to the Fort Berthold people air frustrations about health care, exacerbated by the IHS's reported mention of a $99 million, full-fledged hospital, a vision that glimmered beckoningly before vanishing into thin air. (The IHS would not comment on this.) Dorgan, however, remembers the $99 million estimate with a sigh: "Typical of IHS estimates, it had no connection to reality," he says. "The IHS can't meet current needs, far less get on with new buildings."

The delegation started working to get a new health facility, which, while it wouldn't deliver a full-service hospital to Fort Berthold, would improve on what they had. Building on Tribal Chairman Hall's testimony that "the promise to replace the lost infrastructure, particularly the hospital, has not been kept," Conrad sponsored a bill in 2004 that authorized $20 million for a new clinic. Dorgan then found the money in the budget of the Army Corps of Engineers, the agency that built the Garrison Dam more than half a century ago. "I decided that it was the Corps' responsibility to build the hospital," says Dorgan, who then headed the Senate Appropriations subcommittee that funded it. "They promised they'd replace (the original Elbowoods hospital) and never did it." The money was designated in appropriations bills in 2008 and 2009.

The new clinic -- called Elbowoods Memorial Health Center after the inundated village and hospital -- is under construction just outside New Town and slated to open in August. It will be approximately four times the size of Minne-Tohe. Instead of the current six exam rooms, two doctors and four physician's assistants, Elbowoods will have 13 exam rooms, several rooms for specialty procedures, four doctors and four or five physician's assistants. The reservation currently has 90 medical staff spread between Minne-Tohe and four satellite clinics. That number is projected to go to 157 if the IHS appropriates the requested $8.3 million needed to staff and operate Elbowoods -- approximately twice the current operating budget for health care on the reservation. The requested budget would also provide for a staffed ambulance standing by 24/7.

The clinic is designed to someday be expanded into a hospital, which would likely be funded by the tribe. Project Director James Foote is proud of the design -- a "river wall" near the entrance emulates the banks of the Missouri, and the entryway is a rotunda, reminiscent of ancestral earthen lodges. The dialysis unit will stay at Minne-Tohe; the waiting list won't go away and some patients will still have to travel for the procedure. There will be no overnight stays at Elbowoods, no acute care.

Still, it's a move in the right direction, says Dorgan. "Is it everything they want? No. But it'll move substantially in the direction of good health care."

He adds, "I think the displacement (caused by the dam) had a lot to do with health consequences and diabetes. I've watched over decades the promise of adequate health care to Native Americans not be fulfilled by the federal government."

Lisa Jones wrote this story while participating in The California Endowment Health Journalism Fellowships, a program of USC's Annenberg School for Communication & Journalism. She is the author of Broken: A Love Story -- the tale of her friendship with quadriplegic Northern Arapaho horse gentler and traditional healer Stanford Addison. Her website is lisajoneswrites.com.