TUBA CITY — One of the country's largest Native American tribes, the Navajo Nation, is now the first in the Southwest to have a cancer clinic on reservation land.

It's a long time coming. Tribal members, many of them living hours away from cancer centers in urban areas, have a history of delayed diagnoses and untreated cancer.

"I don't drive much any more, so I would have had to get a relative to take me to Flagstaff for chemotherapy," said Michael D. Jackson, 71, a Navajo Nation member who is in treatment for colon cancer at the new clinic. "I need to go twice a week right now. It's very convenient."

Jackson, a retired social services worker, lives in Tuba City, about 78 miles north of Flagstaff — a roughly three-hour round trip. He was diagnosed in June and was one of the clinic's first patients.

"We've been looking at disparities and community assessments and asking ourselves why our patients are dying and this isn't happening to anybody else," said Lynette Bonar, CEO of the Tuba City Regional Health Care Corporation, which includes the new cancer clinic and a 73-bed hospital, among other services.

"Many of our patients are at the poverty level, and they can't even afford a tank of gas to get to Flagstaff. That is killing them all by itself."

Cancer prevalent in Navajo Nation

Generations of Navajo reservation residents have been disproportionately affected by certain cancers, including colon, multiple myeloma, gastric, kidney, ovarian and cervical, according to the clinic's two oncologists. The rate of kidney cancer the oncologists have seen is "ridiculously high," they said.

The doctors suspect a connection between those cancers and abandoned uranium mines that dot the reservation, particularly on the reservation's western side, where the new cancer clinic is located.

About 250,000 people live on the reservation, which is the size of West Virginia. The clinic marks the first time a Southwest tribe has had a cancer clinic on reservation land with board-certified oncologists, and it could be a first for any U.S. tribe. Bonar could find no others nationwide.

The new $2 million clinic began offering chemotherapy this summer. Its official name is the Specialty Care Center, in part because half of its patients will be getting hematology and not cancer care. Also, clinic leaders did not want to scare away patients by having "cancer" in the name. For many Navajo Nation members, cancer is a sensitive subject they'd prefer to keep private.

The Tuba City clinic will be serving adult members of three tribes — the Navajo, the Hopi and the San Juan Southern Paiute. Its service area, which covers the western part of of the reservation, has a population of approximately 100,000, clinic leaders said.

The Tuba City Regional Health Care Corporation is 100% indigenous, governed by a community-based board of directors representing eight Navajo chapters, the Moenkopi Village on the Hopi Reservation and the San Juan Southern Paiutes.

Bonar, who is Navajo, has been working on making the cancer center a reality via advocacy and fundraising through the Navajo Hopi Health Foundation for the past three years.

It was a team effort, Bonar said, along with husband-and-wife oncologists and hematologists Dr. Frank Dalichow and Dr. Johanna DiMento, who moved to Tuba City in January. Neither is Navajo, but both have dedicated their careers to caring for Native Americans.

"If you go to Phoenix, there is one cancer doctor for every 16,000 people. In Flagstaff, it is one for every 13,000. On the Navajo Nation, it's about one per 115,000," Dalichow said.

He said he calculated the current rate using 1.5 oncologists, since DiMento works half-time.

Until Dalichow and DiMento began working at the clinic, the per-population rate of board-certified oncologists on the Navajo reservation was zero, Dalichow said.

The clinic's doctors are working on getting better data about the scope of Navajo members' cancer, which they suspect is underreported. The Navajo Nation spans three states, and as a result, cancer data is reported to three different state tumor registries.

"Some patients aren't reported at all, and it's a complete disorganized mess, to be honest," Dalichow said. "Nobody really knows exactly how many patients with cancers out here are being diagnosed, because the data is going to three different states."

'She was curable. We will never forget her'

Before he returned to Tuba City as an oncologist, Dalichow spent 11 years working there as a primary care physician. He saw so many cases of late stage and untreated cancer that he began thinking of ways to bring oncology care to the reservation.

"The kind of general thinking out here at the time is that people on the reservation did not get a lot of cancer. But that was not my experience at all," Dalichow said.

He recalls one woman in her 40s in particular who had triple negative breast cancer who said she didn't have the time or money go get treatment in Flagstaff. She especially did not want to place a burden on her family, Dalichow said.

The woman's health declined over the next two years. By the time Dalichow saw her again, the cancer was all over her liver. She agreed to get some chemotherapy with DiMento, who worked as an oncologist in Flagstaff. But it was too late. The woman died within six months.

"She was curable. If she had been able to get the chemotherapy," DiMento said. "We will never forget her. She is a huge motivator for why we know this care needs to be here."

The clinic expects to see three to five new patients a month. Each patient treated closer to home can mean the difference between life and death, clinic leaders say.

"It was not unusual for me to have a patient who was diagnosed with cancer and say, 'I am not going to go to Flagstaff to get treated. I'd just rather go home,' even if it was a curable cancer," Dalichow said.

Language is a barrier, too. The Specialty Care Center has a translation program. About 30% of the patients they see speak only Navajo.

"We have translators here who can very accurately communicate what we are trying to tell the patients," Dalichow said, "as opposed to, when they go off the reservation, they often have to bring a family member with them who translates. And it's often a child, and who wants to bring their child in to translate these very delicate conversations when their mother, or another loved one, has cancer?"

Another cultural advantage to having the clinic in Tuba City is that the health system has an office of native and spiritual medicine. Cancer patients are able to access native healing practices like ceremonies and prayer in tandem with Western treatment, Bonar said.

Uranium, coal and other risks

Dalichow suspects uranium mining poisoned an unknown number of Navajo people.

"This is a unique area in Northern Arizona because uranium mining was done here in the 1940s and '50s, during the atomic stampede, if you will," Dalichow said. "There were many open pit mines that were dug here, and the waste was left after the valuable uranium was extracted."

In addition, there was what many Navajos still refer to as "The Fallout" in the 1950s and early '60s, Dalichow said.

"This area got another hit from the atomic bomb testing that was done in Southern Nevada that blew over Southern Utah and Northern Arizona, lacing this area with radioactive fallout, similar to what happened in Hiroshima and Nagasaki," he said.

Wood and coal burning are also risk factors for exposure to environmental contaminants that can cause cancer and other health problems, he said.

"We see people heat their homes with coal and with wood," Dalichow said. "We see a significant number of respiratory diseases out here, despite people not smoking."

Smoking is not part of the culture among Navajos, he explained, estimating the smoking rate is less than 1%.

Research is ongoing into Navajo cancer risks, including on uranium exposure, diet and hereditary components, said Dr. William Cance, interim director of the University of Arizona's Arizona Cancer Center, which is collaborating with the Tuba City clinic.

One of the issues is that there are tribal members living on the reservation who do not have electricity, he said.

"If you don't have electricity or refrigeration, you are eating processed food, canned food, food from a box — there is a dietary aspect," said Cance, who next month will begin a new job as chief medical and scientific officer for the American Cancer Society in Atlanta.

Some studies have linked a diet high in ultra-processed food with a higher risk for cancer. Obesity may put people at increased risk for certain cancers, the National Cancer Institute says.

Dalichow and DiMento say oncologists with the UA Cancer Center quickly embraced the collaboration, provided their cellphone numbers, and are giving Navajo patients a better continuity of care for certain diagnoses, such as leukemia, high grade lymphoma, brain cancer and sarcoma.

"Hospitals are big bureaucracies, and getting through to the right person can be very difficult. That plays into the treatment delays," Dalichow said. "The University of Arizona has made it very easy. Our job here is not just to administer chemotherapy. It's also to coordinate care and be like an intermediary or a case manager."

Cance said UA officials ideally will make the Specialty Care Center part of its oncology training program, where residents could train under DiMento and Dalichow.

"Being able to now give the treatment on the reservation is transformational. The challenge will be sustainability," Cance said. "How do we educate physicians go there and practice in the future, to keep this going?"

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'What's going on?'

Bonar was born to Navajo parents and grew up in California, spent time working in Missouri, and did not live on the reservation until 2003, when she was an adult.

By that time, she'd worked as a U.S. Army medic and a registered nurse with experience working in, among other areas, radiation oncology, home health, hospice and labor and delivery.

She has since spent her career at the Tuba City Regional Health Care Corporation and was named CEO in 2015.

"I noticed there was not a lot of specialty care that normal hospitals have," Bonar said of her first impressions in Tuba City. "It was all new to me. I thought, 'Where is home health? Where are the nursing homes? What is going on?' I just noticed there was not a lot of special care out here."

In the 16 years she's lived on the reservation, Bonar said she's heard too many stories of Navajo Nation members dying of cancer. She recalled a woman who died at age 35 from stomach cancer. She was gone in six months. Another woman skipped chemotherapy because she was afraid her kids would lose their jobs if they took time off work to drive her.

"Go somewhere else and this doesn't happen," Bonar said.

Bonar credits past Navajo Nation Council delegates and the first board of directors at the Tuba City Regional Health Care Corporation with paving the way for innovations like the new cancer clinic.

In 2002, the health care corporation gained what's known as "self-determination" under the Indian Self Determination and Education Assistance Act, which means it's an independent nonprofit health provider and contracts with Indian Health Services to provide health care to the western Navajo Nation.

Having self-determination status has allowed the health system to expand into specialty care, including neurology, orthopedics, rheumatology and now hematology/oncology, Bonar said. The corporation decides how to reinvest the money it earns and was able to use donations and grants to create the center.

Bonar is working with the nonprofit Cancer Support Community to refurbish an old house near the cancer clinic for cancer education and emotional support, including mental health counseling and support groups.

One of the next projects on her list is building a nursing home on the Tuba City health care campus, with the fourth floor set aside for the Specialty Care Center (the cancer clinic). Right now it's in a modular building, and Bonar would like to see it in a more permanent, secure structure.

Fundraising for those projects will be constant, she said.

She's also working at bringing more Native Americans and, specifically, members of the Navajo Nation, to work in health care in Tuba City.

And she's trying to convince the federal government to reimburse the Specialty Care Center using what she believes is a more equitable oncology model. The current reimbursement does not take into account that American Indian tribes provide specialty cancer care, she explained.

"That's one of the things we keep bringing up with them," she said. "We just keep saying, 'You guys need to look at us differently.'"

Reach the reporter at Stephanie.Innes@gannett.com or at 602-444-8369. Follow her on Twitter @stephanieinnes

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