Cancer & Meth In "Indian Country"
Research shows minorities don't receive the same level of cancer care as
the general population, but American Indians may be the most
underserved. Cancer was their second leading cause of death in 2004,
regardless of gender.
While American Indians generally have a lower incidence rate of
cancer than non-Hispanic whites, they have the highest five-year
mortality rate of any group in the country. Research published in the
journal Cancer in August, however,
challenged the low incidence rate,
showing the race of American Indian patients in central cancer
registries has been misclassified.
Suspicion of white health-care providers, too, keeps some Navajo out of
clinics.
"In their mind, I guess, the big picture is that white man
brought cancer to the Navajo people," Jumbo said, "and the Navajo people
are going back into the clinics so the white man can study them."
'Ship them out'
Tribal members receive free primary health care from Indian
Health Service (IHS) hospitals and clinics. Although there are 12 on the
vast reservation, an appointment can still mean traveling hundreds of
miles.
Getting cancer care is even more difficult. The IHS Contract Health
Service makes such specialty treatment available from providers off the
reservation, but it can be unaffordable and hard to access - as
Priscilla T-Yazzie found.
Passing through Flagstaff, Ariz., in January 2006, she stopped
at an emergency room to investigate her coughing spats and high fever.
"I thought I had bronchitis," the 58-year-old retired social worker
said.
A chest X-ray, however, revealed spots on her lungs. The ER
doctor referred her for more testing. A CT scan at the Tuba City Indian
Medical Center - not arranged until seven months later - revealed she
had cancer. A year after the spots were first identified, she finally
started chemotherapy.
"If someone requires neurosurgery, we have to ship them out,"
said Douglas Peter, director and chief medical officer of the Navajo
branch of the Indian Health Service. "We don't have the resources nor
the capacity nor the location to serve people with all kinds of tertiary
[or specialized] care."
Bringing in specialists is not an option, since most doctors
can't justify spending the time or expense to treat a small number of
people in an isolated rural area, he added.
So cancer patients who need chemotherapy and radiation face road
trips to Salt Lake City, Flagstaff, Phoenix, Albuquerque or Gallup -
sometimes multiple times a week.
"There is no cancer treatment available other than surgery - which is
not always the standard of care," said Linda Cothron, community health
nurse director of the Kayenta Public Health Nursing Program in Kayenta,
Ariz. "The fact that somebody can be suffering from cancer and not have
anything available is outrageous."
For low-income Navajo without cars, a shuttle is available - but
some board as early as 3 a.m. to collect their fellow passengers.
"And then they're coming back late at night and heaven forbid you should
have [nausea] or diarrhea because you got chemotherapy or radiation,"
Cothron said. "You're in a vehicle of strangers."
Cancer taboo: The Navajo and Western medicine
Patient navigators try to break down elders' distrust and fear about
health care and its white practitioners
By Lisa Rosetta The Salt Lake Tribune
Article Last Updated: 09/22/2008 11:54:07 AM MDT
NAVAJO MOUNTAIN, San Juan County - Buck Navajo Jr. sits on a bed inside
his hogan as afternoon light illuminates dust motes twirling in the air.
His left arm suspended in a sling, the medicine man's free hand waves as
he gently chides his granddaughter.
Paulette Smallcanyon, his kin by clan, has come here this July
day toting a 22-page questionnaire about cancer screening. But he
considers the topic taboo, and is reluctant to answer.
Smallcanyon is a "patient navigator," seeking Navajo who are
enrolled in Medicare but are not getting the cancer screenings it
offers. Along with other American Indian navigators working with the
Huntsman Cancer Institute, her mission is to help seniors in her tribe
get tested and treated for cancer.
"Probably over half of them have never had a cancer screening,"
said Eleanor Yazzie, a Navajo Mountain patient navigator who has
interviewed about 40 elders since she was hired a few months ago. "They
said they're healthy and they don't need to go to the clinic."
Research shows minorities don't receive the same level of cancer
care as the general population, but American Indians may be the most
underserved. Cancer was their second leading cause of death in 2004,
regardless of gender.
While American Indians generally have a lower incidence rate of
cancer than non-Hispanic whites, they have the highest five-year
mortality rate of any group in the country. Research published in the
journal Cancer in August, however,
challenged the low incidence rate,
showing the race of American Indian patients in central cancer
registries has been misclassified.
Since 2006, Huntsman Cancer Institute has been working to
develop patient navigators in Utah and Montana tribes as part of a pilot
study with the Centers for Medicare and Medicaid Services.
Navigators guide elders through the maze of doctor's offices, clinics,
hospitals, payment systems and other features of the Indian Health
Service.
Nationally, navigators are seen as an innovative tactic to reduce racial and ethnic disparities in medical treatment. Among Utah's tribes, however, the program is struggling to overcome indifference, suspicion and other hurdles American Indians face in getting health care.
'I don't want to talk about it':
The first challenge for Navajo navigators: finding their way to
the elders. The Navajo Nation is 25,000 square miles, an area roughly
the size of West Virginia. Much of it is considered "frontier," meaning
fewer than five people call a square mile home. Many don't have phones,
and those who do have spotty coverage.
Navigators rely on Medicare rolls to identify eligible elders -
but records are outdated and unreliable. Scores of the people listed
died years ago.
The journey to an elder's home can also be unpredictable. Rain
can transform the reservation's reddish-brown dirt into goop, making its
4,800 miles of unpaved roads slick and impassable.
Once a navigator has finally arrived, elders may refuse to
discuss cancer, a disease for which the Navajo language has no word. It
is instead "lood doo na'ziihii" - literally translated, "the sore [or
wound] that does not heal." It finds people who cross the path of an
animal, such as a snake, Buck Navajo Jr. explains. Or those who are near
lightening bolts charging from the sky and striking the Earth.
Merely uttering "lood doo na'ziihii" can bring it on oneself.
"They say, 'I don't want to talk about it,'" said Janice Jumbo,
site coordinator for the pilot program on the Navajo Nation and a
doctoral candidate in epidemiology and public health. "Or they say, 'Why
are you asking me these questions? I'm a healthy person now,' " she
said.
Many will closely guard a diagnosis, embarrassed to tell family
or friends since they feel it was their misstep or indiscretion that
Paulette Smallcanyon (second from right), a patient navigator for the
Centers for Medicare and Medicaid Services patient navigator program,
interviews Medicine Man, Buck Navajo Jr., 84, inside his hogan in Navajo
Mountain, Utah this past April. They are joined by Sandra Marsh (left),
project coordinator for the CMS patient navigator program, and Janice
Jumbo, site coordinator for the CMS patient navigator program. (Steve
Griffin/The Salt Lake Tribune) caused it. Some Navajo fear treatment
cannot conquer cancer and see it as a death sentence.
Willa Mae Jones, a case manager for the Breast and Cervical
Cancer Prevention Program on the reservation, said cancer-survivor and
other disease support groups are rarely successful.
"They don't have anonymity," she explained.
Putting traditional care first:
Navajo have turned to the Evil Way, the Lightening Way and
other healing ceremonies for generations.
Today, some postpone modern treatments to give the care from a medicine
man first priority.
Nathan Redhouse, Jumbo's kin by clan, arranged an Enemy Way ceremony in July after suffering for years from inexplicable joint and body pain. High in the trees of the northern Arizona mountains near Lukachukai, he sat on the dirt floor of a stick hogan. Smoke and the medicine man's singing flowed through the air.
Outside, a dozen men on horseback waited to ride with Redhouse,
who would soon accompany the healer to another patient's home and pass
on a ceremonial staff dressed in yarn and feathers. Others planned to
follow in a convoy of cars and trucks decorated with yarn.
In a cook shed nearby, relatives prepared food for the guests.
Jumbo arrived with a watermelon, candy, soda and a sack of Bluebird
flour. At the other patient's home, Redhouse, his family and guests
would feast on mutton stew and fry bread. The night - one of six in this
nearly weeklong ceremony - would end with a Squaw Dance lit by a
bonfire.
Some ceremonies are performed seasonally, requiring Navajo to
delay other treatment for up to a year. And they're costly. Some
medicine men charge $1,000 or more - plus the cost of items needed for
the ceremony, such as Pendleton blankets, sheep or jewelry.
"A lot of elders spend so much time and money on traditional
help, they don't have the money to get conventional treatment," Jones
said.
Peter, director and chief medical officer of the Navajo branch of the Indian Health Service. "We don't have the resources nor the capacity nor the location to serve people with all kinds of tertiary [or specialized] care."
Bringing in specialists is not an option, since most doctors
can't justify spending the time or expense to treat a small number of
people in an isolated rural area, he added.
Mixed reception: Between the Utah and
Montana sites, 1,072 American Indians have been recruited to participate
in the navigator project - 728 shy of the 1,800-person goal. Half will
be mentored by a navigator, and their experiences will be compared to
the half who receive less help.
Sandra Marsh, project coordinator at the University of Utah,
approached multiple tribes in Utah: Utes, Paiutes, Goshutes and Shoshone
among them. All tribes, except the Navajo, either didn't express
interest, didn't follow up with signed agreements or had too few elders
on Medicare who were eligible to participate.
On the Navajo reservation, navigator turnover is a problem. As
of mid-September, Marsh said, only Eleanor Yazzie was still actively
working.
Tribes' suspicion and the mistreatment of members during past
studies may be partly to blame, she said, but "we're aware of that and
we want to learn the lessons from that."
Still, she's hopeful. The Navajo site in Utah and the Blackfeet
and other sites in Montana could still yield data by 2010 - when the
pilot project ends - that justifies using navigators in Medicare and
other federal health programs, she said.
In the end, Buck Navajo Jr. answered Smallcanyon's questions and
completed his questionnaire. In coming months, a patient navigator will
be back to try to talk him into his first cancer screening.
lrosetta@sltrib.com
http://www.sltrib.com/portlet/article/html/imageDisplay.jspcontentItemRelationshipId=2109038
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Cancer and Navajo
language: No longer lost in translation
By Lisa Rosetta
The Salt Lake Tribune
Friday, September 19, 2008
In the Navajo Nation, there is no word for cancer. Instead,
people use the phrase "Lood doo na'ziihii," which literally means "the
sore [or wound] that does not heal."
That
translation - and others that do not accurately capture modern medical
terminology - has contributed to problems the Navajo face in battling
the disease.
"It
quickly became apparent to us there was no standard or consistency in
how cancer terminology was being translated into Navajo, which has led
to a lot of confusion and a lot of misunderstanding," said Edward R.
Garrison, who sits on the biology and public health faculty at Dine
College in Shiprock, New Mexico.
Garrison is hoping to change that with a new glossary for cancer
terminology in Navajo, a project funded by the National Cancer Institute
(NCI).
In collaboration with the Mayo Clinic, principal investigator
Garrison and his colleagues have produced 40-plus pages that cover
everything from anesthesia - "a drug that causes the patient not to feel
pain" - to ultraviolet radiation - "invisible rays that are part of the
energy that comes from the sun."
Importantly, cancer is also redefined: "Cells in the body that
grow uncontrollably." Garrison
said the cancer glossary, the first ever to be produced by a tribe,
could have a direct impact on the Navajo people's decision to get cancer
screening - and how they respond to the results.
Some Indian Health Service facilities, for example, report up to an 80 percent "no show" rate for mammogram appointments, a problem Garrison believes "must relate to some degree of misunderstanding or fear - or maybe a fear of knowing."
Much of that fear, he said, stems from the belief that cancer is
not survivable.
"If you're told you have something rotten inside your body, it
turns into an entirely negative perspective on their problem and not
something they can address in healthy way," he said.
As a result, not only do some Navajo have poorer health, but the
Navajo Nation fails to meet Centers for Disease Control and Prevention
(CDC) guidelines for cancer diagnosis and treatment, making it
ineligible for some federal funding.
"They constantly have to plead with the CDC," Garrison said.
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NCAI Begins Indian Country Outreach to Combat Meth Epidemic
Salish & Kootenai Tribal Resources Exhausted in Fight on Meth
Polson, Mont.--March 22, 2006--The methamphetamine prevention ads airing on Montana's television screens are brutally graphic and disturbing. Targeted at teenagers, the ads portray youth whose bodies and minds have been devastated by the killer drug complete with gruesome images of open body sores and the paranoid, psychotic persona of those high on meth. Montana's Indian Country, like Indian lands across the United States, finds itself in the crosshairs of this killer epidemic without adequate resources to fight it.
"Meth has affected the families of every tribal council member sitting here today," said Confederated Salish & Kootenai Tribes of the Flathead Reservation Vice Chairwoman Carole Lankford at the close of a tribal council session. "Whether you are poor or rich, it is devastating to all of us. Some people get hooked and just give up because they don't know what to do. They can't get away from it until they hit rock bottom or leave us for good." Lankford's concerns are indicative of much of rural America, and specifically to tribal leaders. Tribes across Indian Country are seeing their people and their communities devastated by meth production, use and distribution.
"We have to come together as a community to garner adequate resources, including manpower and health services, to bring our communities and our people out from under the grip of meth," said National Congress of American Indians (NCAI) President Joe Garcia, who recently announced a 'Call to Action' for White House and Congressional support to fight meth use in Indian Country. "What is happening on the Flathead Reservation is one of many examples of how much work there is to be done. I am encouraged by support expressed by the Administration and Congress to join us in this fight."
In response to Garcia's 'Call to Action', Senator John McCain (R-Ariz.), Chair of the Senate Committee on Indian Affairs, has scheduled a hearing on the impacts of methamphetamine use in Indian Country for April 5 to hear testimony on the crisis and how Congress can help fight it.
Teresa Wall-McDonald, department head for the Department of Human Resources Development for the Salish and Kootenai Tribe says it will take help from Congress "addressing the root of the problem" to fend off meth use on her reservation.
"In my opinion there is a direct relationship between unemployment and addiction and the lack of resources," she said. "Many of our people are living with little hope and they turn to substance abuse for comfort. Congress has to address adequate funding to deal with economic development on Indian Reservations." Wall-McDonald says the tribe's child protective services division recently placed its 30th newborn baby in foster care after being born testing positive for meth.
"This really is a crisis," she said. "Indian Health Service (IHS) is only funded at 59 percent of its [overall] need and that does not consider high cost cases like meth affected babies and children who's future health care needs we have no idea of. We just don't know how exposure to meth will affect them in the long run. We are talking about children that will have astronomical medical needs and this is absolutely a crisis on every reservation."
Congress continues to show apathy towards this health crisis by sitting on the much needed reauthorization of the Indian Health Care Improvement Act, for the sixth year in a row. Besides the need for up-to-date health care services as a component to fight meth, there is a great need for additional law enforcement to fight the epidemic on the front lines.
"Underfunding is a huge limitation for us," said Salish & Kootenai Tribal Police Chief Craig Couture, whose two man force busted up 76 meth labs between 1999 and 2005. "In my jurisdiction we cover 1.3 million acres of land with just two officers, including 13-15 towns on the reservation. When we conduct undercover buys, it takes two guys to do every controlled buy. When they are conducting a certain operation in a certain area, everything else is untouched and we can only work so many hours in a week." Couture says one particular meth lab bust in 2000 comes to mind when he thinks meth's affect on people in his community.
"We made entry and the suspect grabbed his baby, a baby in diapers, and held it up as a shield," he recalled. "When he sobered up he broke down and cried, realizing the scope of his actions and his addiction." The small tribal police force is facing devastating federal and state funding cuts as the meth epidemic continues to grow. Its effect on infrastructure, health services, children, and the general well being of the many communities here is immeasurable. NCAI’s Policy Research Center is leading the organization’s initiative to fight meth use in Indian Country. For more information on the center, call NCAI at 202-466-7767 or email amcmullin@ncai.org.
Founded in 1944, the National Congress of American Indians is the oldest, largest and most representative American Indian and Alaska Native organization in the country. NCAI advocates on behalf of more than 250tribal governments, promoting strong tribal-federal government-to-government policies, and promoting a better understanding among the general public regarding American Indian and Alaska Native governments, people and rights. For more information, visit the NCAI website – www.ncai.org.
1301 Connecticut Avenue NW • Suite 200 • Washington, DC 20036 (202) 466-7767 • (202) 466-7797 fax •ncai@ncai.org
Contact: Adam McMullin at 202-466-7767 or amcmullin@ncai.org