CROW RESERVATION, Mont. — Ta'shon Rain Little Light, a happy little girl who loved to dance and dress up in traditional American Indian clothes, had stopped eating and walking. She complained constantly to her mother that her stomach hurt.
When Stephanie Little Light took her daughter to the Indian Health Service clinic in this wind-swept and remote corner of Montana, they told her the 5-year-old was depressed.
Ta'Shon's pain rapidly worsened and she visited the clinic about 10 more times over several months before her lung collapsed and she was airlifted to a children's hospital in Denver. There she was diagnosed with terminal cancer, confirming the suspicions of family members.
A few weeks later, a charity sent the whole family to Disney World so Ta'shon could see Cinderella's Castle, her biggest dream. She never got to see the castle, though. She died in her hotel bed soon after the family arrived in Florida.
"Maybe it would have been treatable," says her aunt, Ada White, as she stoically recounts the last few months of Ta'shon's short life. Stephanie Little Light cries as she recalls how she once forced her daughter to walk when she was in pain because the doctors told her it was all in the little girl's head.
Ta'shon's story is not unique in the Indian Health Service system, which serves about almost 2 million American Indians in 35 states.
On some reservations, the oft-quoted refrain is "don't get sick after June," when the federal dollars run out. It's a sick joke, and a sad one, because it's sometimes true, especially on the poorest reservations where residents cannot afford health insurance. Officials say they have about half of what they need to operate, and patients know they must be dying or about to lose a limb to get serious care.
Wealthier tribes can supplement the federal health service budget with their own money. But poorer tribes, often those on the most remote reservations, far away from city hospitals, are stuck with grossly substandard care. The agency itself describes a "rationed health care system."
The sad fact is an old fact, too.
The U.S. has an obligation, based on a 1787 agreement between tribes and the government, to provide American Indians with free health care on reservations. But that promise has not been kept. About one-third more is spent per capita on health care for felons in federal prison, according to 2005 data from the health service.
In Washington, a few lawmakers have tried to bring attention to the broken system as Congress attempts to improve health care for millions of other Americans. But tightening budgets and the relatively small size of the American Indian population have worked against them.
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"It is heartbreaking to imagine that our leaders in Washington do not care, so I must believe that they do not know," Joe Garcia, president of the National Congress of American Indians, said in his annual state of Indian nations' address in February.
Health clinics ill-equipped
When it comes to health and disease in Indian country, the statistics are staggering.
American Indians have an infant death rate that is 40 percent higher than the rate for whites. They are twice as likely to die from diabetes, 60 percent more likely to have a stroke, 30 percent more likely to have high blood pressure and 20 percent more likely to have heart disease.
American Indians have disproportionately high death rates from unintentional injuries and suicide, and a high prevalence of risk factors for obesity, substance abuse, sudden infant death syndrome, teenage pregnancy, liver disease and hepatitis.
While campaigning on Indian reservations, presidential candidate Barack Obama cited this statistic: After Haiti, men on the impoverished Pine Ridge and Rosebud Reservations in South Dakota have the lowest life expectancy in the Western Hemisphere.
Those on reservations qualify for Medicare and Medicaid coverage. But a report by the Government Accountability Office last year found that many American Indians have not applied for those programs because of lack of access to the sign-up process; they often live far away or lack computers. The report said that some do not sign up because they believe the government already has a duty to provide them with health care.
The office of minority health at the U.S. Department of Health and Human Services, which oversees the Indian Health Service, notes on its Web site that American Indians "frequently contend with issues that prevent them from receiving quality medical care. These issues include cultural barriers, geographic isolation, inadequate sewage disposal and low income."
Indeed, Indian health clinics often are ill-equipped to deal with such high rates of disease, and poor clinics do not have enough money to focus on preventive care. The main problem is a lack of federal money. American Indian programs are not a priority for Congress, which provided the health service with $3.6 billion this budget year.
Officials at the health service say they can't legally comment on specific cases such as Ta'Shon's. But they say they are doing the best they can with the money they have — about 54 cents on the dollar they need.
One of the main problems is that many clinics must "buy" health care from larger medical facilities outside the health service because the clinics are not equipped to handle more serious medical conditions. The money that Congress provides for those contract health care services is rarely sufficient, forcing many clinics to make "life or limb" decisions that leave lower-priority patients out in the cold.
"The picture is much bigger than what the Indian Health Service can do," says Doni Wilder, an official at the agency's headquarters in Rockville, Md., and the former director of the agency's Northwestern region. "Doctors every day in our organization are making decisions about people not getting cataracts removed, gall bladders fixed."
‘We get old doctors that no one else wants’
On the Standing Rock Reservation in North Dakota, Indian Health Service staff say they are trying to improve conditions. They point out recent improvements to their clinic, including a new ambulance bay. But in interviews on the reservation, residents were eager to share stories about substandard care.
Rhonda Sandland says she couldn't get help for her advanced frostbite until she threatened to kill herself because of the pain — several months after her first appointment. She says she was exposed to temperatures at more than 50 below, and her hands turned purple. She eventually couldn't dress herself, she says, and she visited the clinic over and over again, sometimes in tears.
"They still wouldn't help with the pain so I just told them that I had a plan," she said. "I was going to sleep in my car in the garage."
She says the clinic then decided to remove five of her fingers, but a visiting doctor from Bismarck, N.D., intervened, giving her drugs instead. She says she eventually lost the tops of her fingers and the top layer of skin.
The same clinic failed to diagnose Victor Brave Thunder with congestive heart failure, giving him Tylenol and cough syrup when he told a doctor he was uncomfortable and had not slept for several days. He eventually went to a hospital in Bismarck, which immediately admitted him. But he had permanent damage to his heart, which he attributed to delays in treatment. Brave Thunder, 54, died in April while waiting for a heart transplant.
"You can talk to anyone on the reservation and they all have a story," says Tracey Castaway, whose sister, Marcella Buckley, said she was in $40,000 of debt because of treatment for stomach cancer.
Buckley says she visited the clinic for four years with stomach pains and was given a variety of diagnoses, including the possibility of a tapeworm and stress-related stomachaches. She was eventually told she had Stage 4 cancer that had spread throughout her body.
Ron His Horse is Thunder, chairman of the Standing Rock tribe, says his remote reservation on the border between North Dakota and South Dakota can't attract or maintain doctors who know what they are doing. Instead, he says, "We get old doctors that no one else wants or new doctors who need to be trained."
His Horse is Thunder often travels to Washington to lobby for more money and attention, but he acknowledges that improvements are tough to come by.
"We are not one congruent voting bloc in any one state or area," he said. "So we don't have the political clout."
Difficulty recruiting doctors
On another reservation 200 miles north of Standing Rock, Ardel Baker, a member of North Dakota's Three Affiliated Tribes, knows all too well the truth behind the joke about money running out.
Baker went to her local clinic with severe chest pains and was sent by ambulance to a hospital more than an hour away. It wasn't until she got there that she noticed she had a note attached to her, written on U.S. Department of Health and Human Services letterhead.
"Understand that Priority 1 care cannot be paid for at this time due to funding issues," the letter read. "A formal denial letter has been issued."
She lived, but she says she later received a bill for more than $5,000.
"That really epitomizes the conflict that we have," says Robert McSwain, deputy director of the Indian Health Service. "We have to move the patient out, it's an emergency. We need to get them care."
It was too late for Harriet Archambault, according to the chairman of the Senate Indian Affairs Committee, Democratic Sen. Byron Dorgan of North Dakota, who has told her story more than once in the Senate.
Dorgan says Archambault died in 2007 after her medicine for hypertension ran out and she couldn't get an appointment to refill it at the nearest clinic, 18 miles away. She drove to the clinic five times and failed to get an appointment before she died.
Dorgan's swath of the country is the hardest hit in terms of Indian health care. Many reservations there are poor, isolated, devoid of economic development opportunities and subject to long, harsh winters — making it harder for the health service to recruit doctors to practice there.
While the agency overall has an 18 percent vacancy rate for doctors, that rate jumps to 38 percent for the region that includes the Dakotas. That region also has a 29 percent vacancy rate for dentists, and officials and patients report there is almost no preventive dental care. Routine procedures such as root canals are rarely seen here. If there's a problem with a tooth, it is simply pulled.
Dorgan has led efforts in Congress to bring attention to the issue. After many years of talking to frustrated patients at home in North Dakota, he says he believes the problems are systemic within the embattled agency: incompetent staffers are transferred instead of fired; there are few staff to handle complaints; and, in some cases, he says, there is a culture of intimidation within field offices charged with overseeing individual clinics.
The senator has also probed waste at the agency.
A 2008 GAO report, along with a follow-up report this year, accused the Indian Health Service of losing almost $20 million in equipment, including vehicles, X-ray and ultrasound equipment and numerous laptops. The agency says some of the items were later found.
Dorgan persuaded Senate Majority Leader Harry Reid, D-Nev., to consider an American Indian health improvement bill last year, and the bill passed in the Senate. It would have directed Congress to provide about $35 billion for health programs over the next 10 years, including better access to health care services, screening and mental health programs. A similar bill died in the House, though, after it became entangled in an abortion dispute.
The growing political clout of some remote reservations may bring some attention to health care woes. Last year's Democratic presidential primary played out in part in the Dakotas and Montana, where both Obama and Democrat Hillary Rodham Clinton became the first presidential candidates to aggressively campaign on American Indian reservations there. Both politicians promised better health care.
Obama's budget for 2010 includes an increase of $454 million, or about 13 percent, over this year. Also, the stimulus bill he signed this year provided for construction and improvements to clinics.
‘She was a gift’
Back in Montana, Ta'shon's parents are doing what they can to bring awareness to the issue. They have prepared a slideshow with pictures of her brief life; she is seen dressed up in traditional regalia she wore for dance competitions with a bright smile on her face. Family members approached Dorgan at a Senate field hearing on American Indian health care after her death in 2006, hoping to get the little girl's story out.
"She was a gift, so bright and comforting," says Ada White of her niece, whom she calls her granddaughter according to Crow tradition. "I figure she was brought here for a reason."
Nearby, the clinic on the Crow reservation seems mostly empty, aside from the crowded waiting room. The hospital is down several doctors, a shortage that management attributes recruitment difficulties and the remote location.
Diane Wetsit, a clinical coordinator, said she finds it difficult to think about the congressional bailout for Wall Street.
"I have a hard time with that when I walk down the hallway and see what happens here," she says.
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