CROW AGENCY, 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. 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 great-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 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 is sometimes true. 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 dollars. 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. 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.
"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.
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 Indian health clinics are often ill-equipped to deal with such high rates of disease, and poor clinics do not have enough money to focus on preventive care.
American Indian programs are not a priority for Congress, which provided the agency with $3.6 billion this budget year.
Officials at the Indian 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 they are not equipped to handle more serious medical conditions. The money that Congress provides for those contract health care services are 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 Northwestern region. "Doctors every day in our organization are making decisions about people not getting cataracts removed, gall bladders fixed."
On the Standing Rock Reservation in North Dakota, 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. 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. 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.
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 American 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.
Dorgan persuaded Senate Majority Leader Harry Reid, D-Nev., to consider an Indian health improvement bill last year, and the bill passed in the Senate. It would have directed Congress to provide about $35 billion for American Indian health programs over the next 10 years. 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 primary played out in part in the Dakotas and Montana, where both Barack Obama and Hillary Rodham Clinton became the first presidential candidates to aggressively campaign on Indian reservations there. Both promised better health care.
Obama's budget for 2010 includes an increase of $454 million, or about 13 percent, over the this year. The stimulus bill he signed this year provided for construction and improvements to clinics.
Back in Montana, the clinic on the Crow reservation where Ta'Shon lived 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.