Fed Up With Deaths, Native Americans Want to Run Their Own Health Care – The New York Times

RAPID CITY, S.D. When 6-month-old James Ladeaux got his second upper respiratory infection in a month, the doctor at the Sioux San Indian Health Service Hospital reassured his mother, Robyn Black Lance, that it was only a cold.

But 12 hours later James was struggling to breathe. Ms. Black Lance rushed her son back to the hospital in western South Dakota, where the doctors said they did not have the capacity to treat him and transferred him to a private hospital in Rapid City. There he was given a diagnosis of a life-threatening case of respiratory syncytial virus.

They told me if I hadnt brought him back in, he would have died, Ms. Black Lance said, choking back tears.

James was lucky to have survived that day in April 2016. The problems at Sioux San, one of 24 hospitals nationwide run by the Indian Health Service, an arm of the Department of Health and Human Services, are pervasive: Five government investigations have found that patients have died at Sioux San from inadequate care, are often given wrong diagnoses and are treated by staff members who have not been screened for hepatitis and tuberculosis.

The troubles were so severe that Sioux Sans emergency room and inpatient unit were shut down by the Indian Health Service and Congress in 2017. Only an urgent care clinic, often understaffed, remained open.

Sioux San is emblematic of the scale of the problems facing the Indian Health Service, which provides government medical care to 2.2 million of the nations 3.7 million American Indians and Alaska Natives and is widely judged to provide substandard care.

But Sioux San is also part of a growing trend in which tribes have declared themselves fed up with the federal governments management of the health care system and are seizing control of troubled hospitals in the belief that they can do a better job of running them.

In mid-July the Great Plains Tribal Chairmens Health Board, a nonprofit organization that represents 18 tribal communities in South Dakota, North Dakota, Nebraska and Iowa, began running the Sioux San hospitals operations.

The change in management has allowed the tribal authority to develop a plan to reopen the inpatient hospital and the emergency room, recruit more qualified doctors and health care workers, and upgrade equipment.

But it is an expensive and daunting proposition.

To make its plan reality, the tribal authority would need to find millions of more dollars over the next several years. Unlike some tribal nations, the tribes in the area do not have enough money from casinos to help finance the health care plan. So they are seeking additional federal grants from outside the Indian Health Service and trying to increase the amount of money they receive from Medicaid and Medicare.

Even if they succeed, it could be years before they achieve their goals of hiring more personnel and reopening the rest of the hospital.

But after years of suffering from poor health care, tribal nations say seizing control of their health care systems may be their best option.

A New York Times analysis of government data found that a quarter of medical positions within the Indian Health Service including doctors, dentists and nurses are vacant. In some areas, the vacancy rate is as high as 50 percent.

In states with Indian Health Service hospitals, the death rates for preventable diseases like alcohol-related illnesses, diabetes and liver disease are three to five times higher for Native Americans, who largely rely on those hospitals, than for other races combined.

Federal government spending on health care for Native Americans lags that for almost any other population. In 2016, the federal government spent $8,602 per capita on health care for federal inmates compared with $2,843 per patient within the Indian Health Service.

In 2017, the Indian Health Service spent $3,332 per patient, according to a report by the National Congress of American Indians. By comparison, Medicare spent $12,829 per patient that year and Medicaid spent $7,789 per patient, the report said.

In South Dakota, whose residents are among the highest users of Indian Health Service hospitals, the life expectancy for Native Americans is 57, 24 years less than for white residents.

In 2017 a federal watchdog agency, the Government Accountability Office, put the Indian Health Service on its high-risk list of programs and operations that need transformation. Although the watchdog agency says the health service has made some improvements since then, it remains on the high-risk list.

Sioux San Hospital, a large yellow brick building on top of a hill in western Rapid City, has a grim history. Built in 1898 as a Native American boarding school, where children from local tribes were sent and forced to assimilate to American culture, it later became Sioux Sanitarium, a Native American tuberculosis hospital. Many students died of disease, as did most of the TB patients. Bodies of both have been found on the grounds.

In 1955 the newly created Indian Health Service took over Sioux San, and by the 1960s it had become one of the first government hospitals for Native Americans who did not live on a reservation. Patients at Sioux San were chiefly members of the Oglala Sioux, Cheyenne River Sioux and Rosebud tribes who had moved from reservations in the region to Rapid City seeking employment and a better quality of life.

Longtime patients say there were problems at Sioux San from the beginning, but it was not until 2010 that the Centers for Medicare and Medicaid Services, which has the largest capacity in the government for investigating medical fraud and abuse, began the first of the five investigations of the hospital.

In 2011, one investigation found, a 57-year-old woman showed up at the emergency room complaining that she had trouble breathing and felt faint. The hospital did not immediately check her. Minutes later, the woman collapsed outside the emergency room, hit her head on the floor, went into a seizure and died soon after.

Another patient died the day after he was discharged from the hospital, but Sioux San had no records indicating what was wrong, according to a 2014 inspection by the Centers for Medicare and Medicaid.

James Ladeaux, the infant who struggled to breathe after the doctor at Sioux San told his mother he had a cold, ultimately spent a week and a half in intensive care at Rapid City Regional Hospital, where doctors successfully treated him. But the missteps by the medical staff at Sioux San soon became the subject of another federal review.

The nurse who helped assess James told inspectors that she did not notice any problem with him, according to a federal investigation report, while the doctor said he failed to take Jamess medical history his premature birth and previous respiratory condition into account. Had he known, the doctor said, he would have altered his treatment plan.

Today Rapid City Regional Hospital, five miles away, sees a large number of patients who would otherwise have been treated at Sioux San.

But health care expenses outside the Indian health system are not necessarily covered by the government, meaning that trips to private hospitals can generate large bills. Tribal members who get treatment outside the system have to petition for reimbursement from the Indian Health Service, which does not have the funding to pay for the private care of all those who need it.

Since 2016, Indian Health Service records show that it has declined to pay medical bills for more than 500,000 patients, saddling them with more than $2 billion in medical debt.

It is sad to see the impact on patients, said Dr. Brook Eide, an emergency room doctor at Rapid City Regional Hospital. The impact emotionally and financially. Its devastating.

Despite the problems, Congress has consistently declined to provide the Indian Health Service with substantially more money or to overhaul the way Native Americans get health care.

These were the first Americans and they have been getting second-class health care, if any at all, said Byron Dorgan, a former senator from North Dakota. Mr. Dorgan, a Democrat, ran an investigation in 2010 when he was the chairman of the Senate Committee on Indian Affairs that found chronic mismanagement, inadequate health care and unqualified staff members within the health service.

Rear Adm. Michael Weahkee, a member of the native Zuni Tribe and a top official in the Indian Health Service, said the federal government had not kept its promise to provide the highest level of health care for Native Americans.

I dont think the federal government has fulfilled its treaty obligations for providing health care because it has not provided I.H.S. with the resources to do so, Admiral Weahkee said.

Admiral Weahkee said he was seeing more tribes move in the direction of self-determination. The shift allows tribal nations greater financial flexibility and opens them up to receive other additional funding sources.

Sioux San is one of six Indian Health Service hospitals in South Dakota, Nebraska and Arizona to have converted to tribal management since 2009.

Despite the challenges they face, tribes who choose to take control of their own health care systems have tended to see improvement in their hospitals, said Lynn Malerba, chief of the Mohegan Tribe and chairwoman of the Tribal Self Governance Advisory Committee, an advisory body to the Indian Health Service.

I know tribes that do have been very successful at creating a really wonderful health system to the point where they are experiencing better health outcomes, she said. Tribal citizens who receive their health care through a tribal program are much happier.

Representative Tom Cole, Republican of Oklahoma and a member of the Chickasaw Nation, said tribes should take care of their own medical needs. My personal feeling is that if you are a tribe it is better to run your own health care system, Mr. Cole said.

The most successful model of self-determination has long been the Alaska Native Tribal Health Consortium, which broke off from the Indian Health Service in 1998 and is often studied by tribal nations looking to take over managing their hospitals. In 2012, the Department of Veterans Affairs even teamed up with the consortium to allow veterans living in the state to get care from the Native American facilities.

Alaskan officials say their funding streams come from aggressively seeking grants, their partnership with the veterans department, and billing Medicaid and Medicare.

Other tribes have used casino revenues, something not available in substantial amounts to Sioux San. And it is not entirely clear yet how much funding Sioux San will be able to win from other sources, including grants and Medicaid and Medicare.

Jerilyn Church, the chief executive of the Great Plains Tribal Chairmens Health Board, which oversees Sioux San, said the group was aiming to reopen Sioux Sans inpatient unit and emergency room, but that doing so would take years.

For now, the health board is addressing the hospitals vacancies, reviewing its bill practices and researching grant opportunities to bring new money for equipment and hiring. Ms. Church said the board was also working to develop a pilot program to buy private insurance for the sickest of patients.

Charmaine White Face, 72, a member of the Oglala Sioux Tribe, is among a group of Native Americans in Rapid City who are not convinced that the management change will be successful.

Ms. White Face thinks there should have been more planning and communication with the residents who primarily use the hospital before the change. But most concerning, she said, is the lack of money to achieve the health boards goals.

In order to be successful like in Alaska, the tribes, or the native organization, has to have a lot of other resources, and the tribes here in the Great Plains do not, Ms. White Face said. We are too poor here.

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Fed Up With Deaths, Native Americans Want to Run Their Own Health Care - The New York Times