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Monday, August 24, 2009

PROMISES, PROMISES: Indian health care's victims

UPDATE: 24 August - New Indian Health Head Works to Heal Agency
Gannett News Service - Aug 23rd, 2009

WASHINGTON - Growing up in Rapid City, S.D., Yvette Roubideaux remembers visiting the local Indian Health Service clinic - and waiting. She never saw the same doctor twice and often heard relatives gripe about the poor care they got.

As a young, Harvard-trained doctor, she worked long days at an IHS rural clinic in Arizona with half the staff it needed. It was some 30 miles from the nearest hospital and far removed from medical school, where she used state-of-the-art equipment and learned the latest techniques.

Now 46, Roubideaux is in charge. The Rosebud Sioux Tribe member is the first woman to run IHS, an agency that still lacks much of the money it needs to make sure all its patients get adequate, timely care and all of its hospitals are fully staffed.

“This agency has probably never been funded at a level that can address the growing needs of the population,” she said. “We’re facing a lot of challenges related to the budget. The demand for services is rapidly increasing. Our buying power has gone down over the years.”

Indians as a group suffer like few others, despite long-standing agreements between the U.S. government and tribes guaranteeing free health care.

They experience substantially higher rates of diabetes, alcoholism, tuberculosis and suicide than the rest of the nation. Life expectancy for an Indian is more than four years shorter than for the average American. It’s even shorter for those living on rural reservations where care often is delivered by overtaxed medical staff working with outdated equipment in aging buildings.

IHS officials say the $3.6 billion they received this year is a little more than half of what they need to fully fund the agency’s mission. Tribal residents only half kid when they say, “Don’t get sick after June,” when federal money seems to run out until the new fiscal year begins Oct. 1. Stories of substandard care and misdiagnoses that have killed patients ricochet across reservations.

Roubideaux is a self-described optimist who is quick to point out the gains IHS has made over the years in such areas as Indians’ life expectancy, which has increased nine years since 1973. She agrees with many critics of the agency, such as tribal leaders and Senate Indian Affairs Chairman Byron Dorgan, D-N.D., who say reforms are needed.

Roubideaux also has met with tribes and asked them to recommend changes, but she declines to say what she would like to do.

“Instead of coming in and saying we’re doing X-Y-Z, I’m (asking) the tribes, ‘If we’re going to improve the Indian Health Service, where should we start? What are your priorities?’” she said. “I have a sense from meeting with tribes of what I think those priorities are, but I would like to ask the question of the people we serve.”

Dorgan, whose state includes several Great Plains tribes, agrees IHS needs more money. But he also calls the agency “unbelievably bureaucratic” and scolds it for not getting rid of incompetent workers, losing track of important medical equipment and not responding to patients quickly enough.

“There are children and Indian elders who are dying because of inadequate care,” he said. “I told (Roubideaux), ‘You’ve got to pick this up, shake it, turn it upside down and change it.’ Indian Health Service has a lot of problems, the most significant of which is a lack of adequate funding. But ranking right up there is the stifling bureaucracy.”

The Government Accountability Office has sharply criticized IHS in recent years, pointing to millions of dollars in lost medical equipment. Roubideaux said some equipment was simply misplaced and she has instituted a new accountability system to track agency resources better.

Dorgan calls Roubideaux “a good person (with) a terrific background,” but he said it’s too early to judge her performance.

Gerald Hill, president of the Association of American Indian Physicians, lauded Roubideaux during her confirmation hearing as someone who “not only understands Western medicine but how to apply this knowledge in native communities.”

Created in 1955, IHS is the primary federal health care provider for about 1.9 million American Indians and Alaska Natives who belong to 562 federally recognized tribes in 35 states.

Roubideaux’s expertise is in diabetes prevention and management. For several years, she co-directed an IHS initiative that has focused on diabetes and cardiovascular disease prevention and case management in 66 sites around the country. It’s the kind of program that could go a long way toward closing disparities between Indians and the rest of America, but Roubideaux says Indians need to do more to help themselves.

“Diabetes is not just a disease of an individual. It’s a disease of a family and a community,” she said during a recent interview at IHS headquarters, a nondescript office building in a Maryland suburb. “If I tell a patient in the exam room: You need to eat healthier and less fatty foods, they go home. If their family doesn’t want to change their eating habits, then they have a much harder time.”

Most agree that funding remains the biggest obstacle. Health care expenditures nationally are $6,538 per capita compared to $2,349 for IHS clients. Tribal leaders often note that the government spends more caring for federal inmates.

“It boils down to money, whether we want to believe it or not,” said Robert Cournoyer, chairman of South Dakota’s Yankton Sioux Tribe, more than half of whose members live at or below the poverty level. “Good health care can’t be had unless you have money, and we serve the poorest of the poor.”

The agency desperately needs funds for raises and staffing. Hundreds of medical jobs remain vacant, including 21 percent of slots for doctors, 24 percent of dentists’ jobs and 26 percent of openings for nurses, according to the agency.

President Barack Obama, who campaigned last year for the Indian vote, has proposed a 13 percent increase in IHS funding for 2010 - the biggest proposed jump in years - to cover pay raises, staffing of new facilities and equipment upgrades. More than $100 million would be spent contracting with private companies who provide medical care the IHS can’t. And the economic stimulus package Congress passed earlier this year includes $500 million for Indian health.

Roubideaux is encouraged.

“We have all the elements in place to really address these health disparities,” she said. “It’s just that we need two things: If we can begin to address the problem of resources, we can do a lot. But the second area is how we’re providing that care and making sure we’re doing it in the best way possible.”

Original post date 6/15/09
I served as director of health care in the first tribal clinic funded under the Indian Self-Determination Act (93-638). This clinic, at that time in 1978, was about to be defunded by IHS.

During the time I was there our program gained sound financial footing and expanded to offer services not previously funded by IHS. These services were major health concerns the government often does not deem necessary to fund in Indian communities nor in general public health funding. Examples were dental and mental health.

IHS has grossly fragmented care at best. I learned exactly how the game was played and also learned how to get around the excuse called Priority 1.

Along the way we developed a great clinic model. Other tribes have used this approach to set up tribal clinics.

However, things overall haven't changed in the way they should have.
PROMISES, PROMISES: Indian health care's victims
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, 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 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'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.
"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 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."
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."

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.

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.

On the Net:
Indian Health Service:
U.S. Department of Health and Human Services Department's office of minority health:
National Congress of American Indians' health care issues:
Senate Indian Affairs Committee:
GAO reports:,
Copyright 2009 The Associated Press. All rights reserved.

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