PAPER GENOCIDE

Delight Talawepi lives up to her name. She smiles often, loves Santa Fe, and extends a polite demeanor even to strangers. But she's living in constant pain.

"All of a sudden, I have become fearful of getting sick," she says. "And because I'm getting fearful, it seems I'm getting sick more often. I think a lot of it is fear that I cannot be served, so we sit and we wait and hope the pain goes away."

Talawepi, a Hopi mother and assistant academic dean at the Institute of American Indian Arts, has been living for months with an intrauterine device that is displaced in her uterus. She had the IUD inserted five years ago at the Santa Fe Indian Hospital on Cerrillos Road. When she recently asked hospital staff to remove it, they told her they didn't have the technical ability to do so, then referred her to Christus St. Vincent hospital.

If Talawepi were enrolled as a tribal member in one of the Pueblos that surround Santa Fe, she would likely have been able to have the procedure at St. Vincent and have the bill sent over to Indian Health Service-the federal agency that oversees the Santa Fe Indian Hospital-so that she would pay nothing out of pocket. But because she is Hopi, the Santa Fe Indian Hospital will not cover the costs of the outside referral. And her Medicaid plan won't pay for enough of the procedure at a private hospital to make it affordable.

Her only real option for relief-aside from borrowing money to foot the bill- would be to take extended time off work to travel back to her tribal homelands in Arizona, where she could visit an IHS hospital for a free procedure. But she's the main provider for her family. She can't just take weeks off of work on short notice, even though a lost IUD could tear through the wall of her uterus or even damage other internal organs.

"I'm in a dire situation," she tells SFR. "I have another doctor's appointment on [June] 30, and I will tell them, 'Why can't you do this for me?' And they're probably going to send me out."

Because of IHS rules that ration a chronically insufficient pot of money, and owing to Santa Fe's relatively large population of urban Indians like Talawepi who live away from their tribal lands, a significant number of people here are eligible for treatment through IHS but cannot receive it at the Santa Fe Indian Hospital when they need it most.

It's a core point in a new health impact assessment assembled by a community advisory board of Native Santa Feans and with the help of the New Mexico Health Equity Partnership, a nonprofit organization that helps people analyze policy issues. Talawepi served as a member of the advisory board. Together with a small research team, they used surveys to investigate how deep structural problems within IHS, including chronic underfunding, uniquely affect Santa Fe's Native community.

The federal government's failure to provide easily accessible health services to Native people in Santa Fe amounts to an abrogation of its historical responsibility under various treaties. Although many people, including Talawepi, praise the culturally responsive treatment they've received at the local Indian Hospital, they say the IHS rationing arrangement that prioritizes local tribes over Native people from outside Northern New Mexico is unfairly fomenting tensions over care that should be guaranteed to everybody who qualifies for it.

"I hate to say this, but it's the Pueblos versus the urban Native Americans," Talawepi tells SFR. "When I hear from other people who are not Pueblo, that's the biggest complaint: The Pueblos are the ones who have more control of the Indian Health Services in Santa Fe."

She believes that the union between Pueblos and urban Native people can be strengthened if they organize to demand more from the federal government. But that will mean confronting over a century's worth of neglect-or, as another urban Native person living in Santa Fe called it, an official policy of "paper genocide;" extermination through policy directives. With the feds in the process of cutting funding to IHS and related programs that support Native healthcare, the odds of success are stacked as high as they can be.

But Talawepi and others say reform is necessary to get the care they need.

The arrangement within IHS responsible for Talawepi's dilemma, known as the Purchased/Referred Care program, allows those living within the pre-designated geographic parameters of their tribes to be referred to hospitals outside of IHS for complex procedures, such as heart surgery, and have the bill covered by IHS. But Native people living in Santa Fe who are not part of the nine local Pueblos (San Felipe, Cochiti, Santo Domingo, Tesuque, Pojoaque, Nambé, San Ildefonso, Santa Clara and Ohkay Owingeh), have to travel to their tribe's federally designated homeland if they want IHS to pick up the tab for speciality care.

That means there's a sizable proportion of Native people living in Santa Fe who cannot access critical care guaranteed to them by the federal government unless they're willing to travel hundreds to thousands of miles. Nationwide statistics indicate over two-thirds of American Indians and Alaskan Natives live away from their home reservation. This is primarily due to decades of federal policy meant to push them into cities.

Despite some increases in funds, IHS has never had the resources it needs to make good on its historical mandate to provide quality and convenient care for Native Americans. The agency was forced to operate on its 1998 budget from 2000 to 2008 because President George W Bush never ratified new funding. The passage of the Affordable Care Act in 2010 removed presidential approval as a necessary requisite to alter the agency's budget, but while the Obama administration raised the budget of IHS to historic levels, it was still underfunded by 59 percent in 2016, according to the National Congress of American Indians.

In the first century of US history, the federal government ratified more than 300 treaties guaranteeing it would provide for the welfare of Indian people in exchange for tribal land and natural resources. The 161 IHS hospitals and facilities operating today find their roots in facilities that were built around the Indian boarding schools in the late 19th century, during the first traumatizing push to assimilate Native people. Amid movements for liberation in the 1970s, President Richard Nixon signed a law that allowed local tribes to take control of IHS funds to build their own care centers. Legislation passed in later decades strengthened these laws, and by the end of 2016, approximately 60 percent of the IHS's total appropriated budget was administered by tribes.

But greater autonomy over how the funds are distributed hasn't meant that the federal government is placing a higher priority on Indian healthcare. Across different health agencies, including Veterans Affairs, Medicaid and Medicare, federal dollars spent on IHS are by far the lowest per patient, according to numbers from 2013 compiled by the National Congress of American Indians.

"A lot of urban Indians feel that we are being pushed out of the system," says Cyndi Hall, a Cherokee woman living in Santa Fe. "It's paper genocide. That's what it is. It's paper genocide. Not with weapons, it's not rounding us up anymore, [but] on paper we don't get the treatment we were guaranteed to get."

Hall, who is married to a Navajo/Diné man, thinks she's risking retaliation by speaking out. But she says she has to, because she believes her family's membership in non-local tribes is a major reason why they have had poor experiences at the Santa Fe Indian Hospital.

Four years ago, she says, her husband rapidly began losing weight due to illness. When he visited the Santa Fe Indian Hospital, he was told he was having panic attacks and prescribed psychotropics. It wasn't until he went to see a private doctor in Albuquerque that the family learned he had H pylori, a gut infection found more commonly in Native people.

"We're still paying it off," Hall tells SFR. In total, her husband's diagnosis and treatment cost between $30,000 and $35,000, nearly forcing the family into bankruptcy.

Her son was also misdiagnosed at the Indian Hospital, she says, and it took an outside second opinion to address the real issue. But she believes she should have never had to seek out private doctors in the first place, considering the federal government's historical obligation to provide care.

"Those federal funds should follow us wherever we go," Hall says.

Hall got her chance to channel her grievances as a community advisory board member for what became "Indian Health Services Budget and Urban Indian Budgeting Decisions," a 63-page health impact assessment about the Santa Fe Indian Hospital published in January.

An associate professor at the University of New Mexico's College of Nursing named Emily Haozous convened Hall, Delight Talawepi and five others-nearly all of them Santa Feans who hail from tribes outside of Northern New Mexico- to oversee the direction of the report as a community advisory board. Together with a small research team, the group administered a 12-page survey to 165 Santa Feans who frequent the Indian Hospital. The majority of those surveyed were Pueblo, Navajo/Diné, or Northern Plains tribes and reported incomes of less than $49,000 a year.

"We learned that people see Santa Fe IHS as theirs," says Haozous, a member of the Oklahoma-based Fort Sill Apache Tribe. "Given the choice, they go there because it's a home for healthcare, culture, family and history. It still belongs to the community."

The assessment examines with a wide scope how economic stability, education and food insecurity intersect with institutional problems at the Santa Fe Indian Hospital to create an ongoing crisis. The county's disparity between rent and income is considered just as important as the historical integration of innutritious government rations like flour, sugar and lard into diet.

Among the Santa Feans Haozous and her team surveyed, diabetes, heart disease and obesity were the top three community health concerns. Lack of exercise and alcohol and drug use ranked highly as well. Respondents also named depression and stress as leading personal concerns, and almost 30 percent said healthy food was unaffordable for them.

Haozous says her team presented their report in April to the IHS tribal health board, which consists of representatives from the tribes it serves.

She says their reactions were positive. A few months earlier, in January, they unveiled their assessment to the general Native community at the Santa Fe Indian Center. Outreach efforts are ongoing.

"The [assessment] doesn't just belong to the research team," she says, "it belongs to everybody. So we encouraged the people who showed up [in January] to talk to their tribal leaders all around the country."

While Haozous' health impact assessment doesn't dive deeply into the history of the Santa Fe Indian Hospital in particular, one of the hospital's former medical directors, Dr. Ben Whitehill, describes the time he worked there from 1983 to 1993 as "the golden years."

"We had a very comprehensive hospital in those days," he says. "We had an emergency room, full obstetrical care, pediatric care, two operating rooms, a threebed intensive care unit, as well as medical surgery and full dental services."

In addition, he says, many local doctors conducted clinics and performed surgeries at the hospital. There was a full-time surgeon on staff. But even then, before the budget for IHS was frozen in 1998, conditions were far from ideal.

"It was beyond us," he tells SFR. "We were aware that we didn't have enough money to get all the work done, but we just had to knuckle under and do the best we could with what we did have."

The hospital staff was close to the local tribes it served, Whitehill says. People who weren't from those tribes tended not to get priority when it came to referrals for outside care.

"We tried to get the people from our own tribes to have a little precedent over the distant tribes," Whitehill tells SFR. "Because that's our main mission. So ifyou were Navajo or Choctaw, your chances of getting referred for outside care would be almost nil. Because we never could even satisfy all the needs of the tribes we were meant to serve."

Officials at the Santa Fe Indian Hospital did not answer SFR's emailed questions and did not consent to repeated requests for an interview. But the health impact assessment of the hospital confirms that the disparity Whitehill observed over two decades ago persists. Although 25 percent of respondents said their health care was covered through a private insurer, and 34 and 16.5 percent were insured, respectively, through Medicaid and Medicare, more than half said they had neglected to seek out care within a month of answering the survey because their condition couldn't be treated at the local Indian Hospital.

The most common reason: They weren't eligible to be referred for outside treatment under the Purchased/Referred Care program. Across the IHS bureaucracy, limited funds for the program are almost always reserved for emergency procedures, including trauma and neonatal care.

IHS funds allocated to the Albuquerque Service Area (estimated at around $81 million for this fiscal year) are divided up among federally administered facilities (like the Santa Fe Indian Hospital) and tribal-run facilities that serve 27 different tribes in New Mexico, Colorado and Texas. This includes the Santa Fe Service Unit, which is mandated to serve members of nine Pueblos.

The Santa Fe Service Unit has dedicated $5.7 million of its budget for Purchased/Referred Care every year since 2015, although the Santo Domingo Pueblo has managed its own Purchased/Referred Care program since 2014. Tribal and hospital leaders decide who qualifies. It's a pie that's likely to shrink in the coming years.

Rollbacks to Medicaid eligibility loom in Congress, and a $300 million cut to IHS is proposed by the Trump administration. Some tribal members refuse to enroll in Medicaid or Medicare in protest, citing the historical obligation to provide health care specifically for Indians. Nevertheless, the expansion of Medicaid in the Affordable Care Act (or Obamacare) helped increase the number of Native people covered in New Mexico between 2011 and 2014.

"Medicaid expansion has really helped to offset Purchased/Referred Care funding because tribes have more patients who are able to go outside the system with Medicaid," explains Caitrin Shuy, director of congressional relations at the National Indian Health Board. Supplements from Medicaid and Medicare bring in almost $1 billion a year in third-party revenue to IHS.

The National Indian Health Board has asked Congress keep American Indians and Alaska Natives out of plans to reduce eligibility requirements for Medicaid. Caps to state allotments, they say, could leave states to decide how to distribute dwindling Medicaid dollars for their populations, including Native Americans, whose health care is legally a federal responsibility, not a state one.

US Sen. Tom Udall (D-NM) says protecting funding for IHS is among his priorities.

"Current federal funding covers less than half of IHS operational costs," Udall tells SFR by phone. "Fortunately, increases in revenue from Medicaid expansion have offset those annual costs, but without that revenue, necessary services may no longer be available to Indian country." There are currently 135,000 tribal members enrolled in Medicaid in New Mexico, he says, calling the potential rollback "unconscionable."

Medicaid expansion was the reason that Sam Haozous, a music promoter in Santa Fe who has visited the Santa Fe Indian Hospital since the 1970s (and the older brother of Emily Haozous), was able to receive health insurance for the first time in his life at nearly 50 years old. He says the Indian Health Service enrolled him in the Medicaid program, though now he's insured through his employer. If that falls through, and the federal government claws back funds for Medicaid, he might be off the rolls yet again.

"I personally feel like we're all gonna get screwed," Sam says. "But maybe the Republicans will grow a heart or something."

At a recent arts and crafts fair on a small dusty lot between Cerrillos Road and the parking lot of the Santa Fe Indian Hospital, 30-year hospital employee Cindy Trujillo helps her daughter and sister-inlaw prepare trays of raw frybread and other ingredients underneath a vendor's tent. She helped convene about a dozen vendors to raise money for the Santa Fe Indian Hospital Employee Association, which puts on events for hospital employees.

"We're going to have a barbecue for the entire hospital staff, we've gotten them Isotopes tickets-just activities for the staff to enjoy, since the morale can be kind of low," she says.

Across the agency, retaining staff is a serious problem, according to a 2016 Department of Health and Human Services survey of the nation's 28 IHS acute care hospitals. Tightening budgets have meant longer hours and less pay for staff, and at the Santa Fe Indian Hospital, it's also meant that essential services once offered are gone, including obstetric care and same-day surgery.

People who completed the health impact assessment for the hospital listed these two services among their top needs, as well as dental specialists, colonoscopy procedures, mammograms, substance abuse detox and other services.

Chief among the four main demands of the assessment's authors were funding IHS at 100 percent of need-estimated by the National Congress of American Indians to cost about $29 billion over the next dozen years-and eliminate Purchased/ Referred Care eligibility by tribal enrollment. That way, funds would be pegged to each patient instead of geographic areas. Emily Haozous believes the latter demand was the most radical recommendation in the assessment.

"It would cost IHS more money," she says, because most Native people don't live in their tribal area. Furthermore, she explains, tribal leaders are reluctant to let go of direct funding for tribes.

Not all of the recommendations in the assessment are unattainably large; another is that local organizations offer a food bank and nutrition education services at the hospital. But David Gaussoin, a communications and marketing associate at the New Mexico Health Equity Partnership, says his organization chose to support Haozous' proposal for an assessment of the Santa Fe Indian Hospital in part because of its large ambition.

"It's the first report that really puts everything in perspective," he tells SFR. "It helps start the conversation, because if we don't start having those hard conversations we'll never be able to get that pie in the sky." EH