The Indian Health Service is badly underfunded. Reservation patients are paying the price.
Originally published in the University of Montana School of Journalism Perceptions
By the time doctors told Leola Kennedy she had only a few months to live, her neck was so swollen from cancer she couldn’t turn her head.
In the eight agonizing months leading up to her diagnosis, the 46-year-old woman made repeated visits to the urgent care ward at Blackfeet Community Hospital in Browning, where she first complained of headaches and insomnia, then back pain and then a total loss of appetite.
In the last two months before her diagnosis, Kennedy says she spent every day in the emergency room. Her teenage daughter, Maranda, had to skip weeks of classes in order to drive her mom to and from the hospital.
Kennedy says she sometimes waited for seven hours in the emergency room before seeing a physician or practitioner, and then only to be misdiagnosed with a host of illnesses she didn’t have — pneumonia, bronchitis and emphysema.
Before getting the diagnosis and treatment she needed at special care facilities off northern Montana’s 1.5 million-acre Blackfeet Reservation, doctors mistakenly told Kennedy her salivary gland was blocked, causing her neck to bulge and ache, and prescribed pills that never seemed to help.
“They gave me painkillers and muscle relaxers,” Kennedy says. “They told me to take lemon drops but they never gave a biopsy.”
Doctors at Blackfeet Community Hospital couldn’t explain what made Kennedy’s visits to the hospital so frequent, and nothing they prescribed stopped her cancer from spreading.
First it attacked the parotid gland near her neck before spreading to her heart and eventually her brain, where the cancer metastasized.
All the while, Kennedy’s options for treatment were limited.
Like more than half the Indians enrolled on the Blackfeet Reservation in northern Montana, Kennedy cannot afford private health care and isn’t eligible for Medicaid or Medicare.
Instead, she relies on the federally funded Indian Health Service to pay for her medical needs.
But IHS provides health care services only to the extent that appropriated funding from Congress allows.
And even though the cost of health care has risen 25 percent in the last six years and inflation rates have increased, IHS has had no luck securing additional appropriations from the federal government.
IHS is so underfunded that to be transferred off the reservation for specialized treatment a patient must be in danger of losing life or limb.
So day after day Kennedy had to wait her turn in the crowded emergency room, which ranks number one in Montana for cases of trauma and quickly soaks up IHS resources. The hospital also lacks fundamental diagnostic tools like a CAT scan and MRI machine, so cancer often goes undetected.
IHS, the primary health care provider for more than 1.6 million members of federally recognized tribes nationwide, has gotten almost no additional money from Congress in six years. The Billings-area office alone oversees the health care provisions of nearly 60,000 Native Americans on seven Montana reservations and one in Wyoming.
In order to keep up with rising health care costs, inflation rates and the increasing number of emergency room visits, Blackfeet Community Hospital needs millions of dollars more, health officials say.
“It’s frustrating as heck because it doesn’t allow us to practice standard-of-care medicine,” says Dr. Mary DesRosier, one of two Indian doctors at the Browning hospital. “If somebody comes in with lower back pain and numbness down their leg, standard of care would get them a CAT scan to determine what the problem is. But without that diagnosis, it’s hard to tell if something is life- threatening or not.”
Until last year, DesRosier never missed an opportunity to show her support for more federal funding.
But now, rankled that federal funding is so low and galled that American Indians seem to be the first cut in the federal budget and the last funded, DesRosier has given up attending Contract Health Service committee meetings, where other hospital and IHS staff convene to discuss how they can reduce the number of patients who go untreated for too long — patients just like Kennedy.
The branch of IHS responsible for funding patients’ treatment off the reservation, CHS can’t even afford to pay for many patients whose conditions already mandate a referral to another hospital.
One patient complained to DesRosier that a clinic in Great Falls was billing him for treatment he received after doctors in Browning referred him there, treatment that CHS was obligated to finance.
But CHS is just as broke as many of its patients, and the man’s bill was turned over for collection.
“I just saw a list four pages long,” DesRosier says. “At least 100 people they referred off the reservation and now CHS can’t pay for because they’re broke. They are so underfunded.”
The poor state of health care on reservations nationwide is a testament to U.S. failure to live up to its treaty obligations to Indian people, says Carol Murray, a professor in Blackfeet studies at Blackfeet Community College in Browning.
“We’ve been without it for so long most people don’t even know what it’s like to have it,” Murray says.
A 2004 report by the U.S. Commission on Civil Rights titled “Broken Promises: Evaluating the Native American Health Care System,” states tribes exchanged about 400 million acres of ancestral lands in return for promises and payments, including for health care, an agreement that still exists.
The report concludes the United States’ “lengthy history of failing to keep its promises to Native Americans includes the failure of Congress to provide the resources necessary to create and maintain an effective health care system for Native Americans.”
In July, when doctors eventually referred Kennedy to a hospital in Great Falls, a biopsy showed her cancer was so advanced it had spread. By the time of the diagnosis she already had three brain metastases, as well as 2.5 pints of cancer-ridden fluid around her heart.
Doctors told her she might have fewer than a few months to live.
That day, Kennedy began her first of 12 radiation sessions. Two weeks later she started chemotherapy, which would last for another eight excruciating months.
Kennedy’s family moved to a housing center in Great Falls, where out-of-town patients who require daily treatment can live for free.
In March, an MRI showed her cancer was in remission.
Scratching her stubbly head, the beginnings of brown hair just barely sprouting from what radiation made barren, Kennedy remembers how doctors told her she might die.
“The doctors say I’ve done better than they expected when they first saw me,” she says.
Kennedy thinks the last 15 months would have been less traumatic had she been referred off the reservation when her symptoms first bothered her.
“If they don’t refer you off, you have to go yourself,” she says. “How can I afford that?”
The “Broken Promises” report decries the need for IHS facilities to ration care and insists that more federal money is necessary.
Denial of CHS payments has increased more than 75 percent since 1998, the report says.
Dr. Craig Vanderwagen, acting chief medical officer for IHS, acknowledged that rationing health care is not the optimal method of treating patients.
“We don’t feel good about the number of patients who need care who are rejected because their problem is not life-threatening…,” he said. “We hold them off until they’re sick enough to meet our criteria. That’s not a good way to practice medicine. It’s not the way providers like to practice. And if I were an Indian tribal leader, I’d be frustrated. ”
Rationing of health care, the report says, means denial or delay of treatment, and forces patients to accept cheaper and less effective treatment or go without care. Study authors said they couldn’t assess whether the underfunding led to higher death rates, as IHS asserts, but said rationing clearly results in inadequate health care for American Indians.
For more than two years, Busy Hall worried as her sister suffered from persistent pneumonia and chronic bronchitis. It took repeated complaints about unrelenting back pain before IHS paid for a trip to Great Falls.
A biopsy proved what Hall feared. Phyllis Hall had cancer in her lungs, liver and brain.
“I told her, you’re having pneumonia too much,” Hall says. “They should have sent her out to get her tested as soon as she complained of back pain.”
Doctors operated, but less than a week after surgery she was in a coma, her breathing sustained with a respirator.
The cancer soon ended the 65-year-old woman’s life.
“It must have been like a wildfire in there,” Hall says. “If they would have looked at her sooner I could still have my sister.”
But getting help sooner is a problem many Blackfeet face, and doctors are limited in what they can do to help.
Physicians must follow stringent guidelines before referring a patient to another hospital or clinic.
Using a 12-point numeric rating system, they determine the urgency of the patient’s condition.
But even a 12 on the scale — meaning the most acute — still doesn’t mean an automatic referral.
Unless a patient is in danger of losing his life or limb, or is in a “sense-threatening emergency” — like an eye injury that risks vision — doctors can’t sign a referral.
But many patients need a CAT scan or MRI to determine the severity of their condition, a test doctors in Browning cannot offer.
Some doctors in Browning have learned to bend the rules if they suspect a patient has cancer or another life-threatening disease that can’t be diagnosed definitively without a scan. DesRosier says if a patient shows major symptoms of cancer and she knows the patient needs a CAT scan or abdominal scope, she writes a referral saying the condition could be life-threatening.
“I’ve learned to kind of fudge,” DesRosier says. “It’s not entirely honest, but it gets people the care they need.”
Part of Blackfeet Community Hospital is being remodeled so it can accommodate a CAT scan machine, an instrument the Billings Area IHS has finally acquired.
Having a CAT scan machine in Browning will save hundreds of thousands of dollars, as well as save the lives of patients, DesRosier says.
Busy Hall’s daughter, Ida Racine, wears an amulet around her neck, a protection pouch she believes helped her survive lupus, a condition in which the body attacks its own cells and tissues, causing inflammation, pain, and possible organ damage.
For more than a decade Racine was in and out of the hospital as doctors tried to determine what was causing the pain in her joints and abdomen.
During that time different physicians prescribed dozens of medications that interacted negatively, she says, causing discomfort Racine contends trumped anything caused by the illness.
“They did more harm than good,” she says.
The “Broken Promises” report cites the turnover rate in health care providers on reservations as one of the biggest problems leading to misdiagnoses.
“One of the major problems created by the high turnover rate of providers is that patients do not receive consistent care,” it says.
Now Racine is a healthy 34-year-old mother and takes only one daily medication.
But she believes her health was restored because of sweat lodge ceremonies, prayer and tinctures — cultural practices she says doctors sometimes discourage.
Because IHS cannot afford to pay for doctors to attend cultural sensitivity classes, they often don’t accept traditional healing practices and medicines, the report states.
Racine says an arthritis specialist from Chicago, a doctor who volunteers at Blackfeet Community Hospital for one week each July, admonished her not to rely on her beliefs for help.
“I was wearing a tank top and he saw my pouch,” she recalls. “He told me not to believe in witchcraft. I wanted to ask him, ‘If you look down at us like dirty Indian people then why are you here?’”
She complained about the doctor. DesRosier says the incident is not unusual. “I see cultural insensitivity all the time,” she acknowledges.
“There was a complaint against one doctor seeing a woman in the ER who had smudged,” DesRosier says, referring to the practice of burning sage for spiritual cleansing. “The doctor accused her of using marijuana. It was incredibly insulting.”
Jim Kennedy palms a buffalo stone in one hand and, with the other, he points to a line that snakes across the hospital waiting room to a service-window of the pharmacy.
The director of the Blackfeet Community Hospital, Kennedy says he has a bond with buffalo stones, or ammonites – fossilized shells that resemble sleeping bison and which the Blackfeet call insikim and use in spiritual ceremonies.
Kennedy is known for his flair for seeking out the stones when he goes walking through Montana’s prairies and mountains.
“They call out to me,” he says.
Kennedy wishes the Blackfeet community would adopt a healthier lifestyle and strive for fitness and spirituality. He praises DesRosier for emphasizing the importance of fitness, prayer and belief.
Already, the pharmacy is 19,000 prescriptions ahead of last year’s count, he says, and has filled as many as 1,000 prescriptions in one day.
“That’s kind of unheard of for a pharmacy this size,” he explains.
He says DesRosier prescribes fewer drugs than any other physician at the hospital.
The hospital’s limited resources are strained as Indians living off the reservation sometimes travel 200 to 300 miles in a day for IHS-funded medical attention, Kennedy says.
In his office, Kennedy clicks two other buffalo stones together.
“These are my twins,” he says.
The stones’ rolling contours fit together perfectly, and Kennedy says he found them within 10 feet of each other while hiking.
According to Blackfeet belief, Kennedy’s knack for finding the stones makes him fortunate and gives him strength.
For now, Kennedy says he’ll use his dynamism to help sustain the health of Montana’s Blackfeet Nation.
After all, it’s in his nature.