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“The only thing necessary for these diseases to the triumph is for good people and governments to do nothing.”


AIDS takes a growing toll on Native Americans

Judy Nichols
The Arizona Republic
Jul. 3, 2005 12:00 AM

 KIANA, Alaska -- Frank Igluguq Gooden grew up near the end of the Earth.

His Alaskan village of Kiana, home to 400 Inupiat natives, lies north of the Arctic Circle.

No roads go there. To visit, you must fly 550 miles north from Anchorage to the hub town of Kotzebue, then catch a puddle-jumper east across 150 miles of water and open tundra, populated by moose and bears, to the edge of the Kobuk River.

In the winter, it snows up to 5 feet, and temperatures can drop to 50 below zero. In the summer, the sun never sets.

In this region of breathtaking beauty, AIDS seemed faraway, a distant danger haunting big cities.

No one in Kiana had ever admitted having it. Until Frank.

With AIDS cases increasing in the most remote Native American outposts, the isolated, insular nature of some of those communities may be their downfall.

Those who thought the isolation would protect them, that the disease was only found in urban areas, now see it cropping up in the smallest villages, far from the nearest clinic, places where the lack of health care means people often wait until they're very sick to get help.

And late diagnoses mean more transmission and quicker deaths.

"Because some Native villages, reservation rancherias and pueblos are small and isolated, HIV/AIDS could wipe out entire communities if not aggressively addressed," said Irene Vernon, who has written a book on Native Americans and HIV/AIDS titled Killing Us Quietly.

Epidemics have wiped out Native populations before.

After European contact, diseases like smallpox, typhus and measles cut their numbers to 250,000 from more than 5 million.

"AIDS could become the next smallpox," Vernon said. "It's grim."

More than a million Americans are living with HIV/AIDS. About 1,900 of them are Native American.

AIDS infection rates for Native American adults and adolescents, which surpassed Anglos' rate in 1995, are more than 40 percent higher than the Anglo rate. The 2003 rate was 11.5 per 100,000, compared with 8.1 for Anglos.

More than half of the Native American cases are concentrated in five states in the West: California, Oklahoma, Arizona, Washington and Alaska.

Many fear the numbers could increase dramatically.

The red flag: Native Americans have high rates of hepatitis C, found in intravenous drug users; alcoholism, which fuels poor decision-making; and skyrocketing rates of sexually transmitted disease, or STD, indicating unprotected sex.


"These rates of STDs tell us there is a great potential for much higher rates of HIV/AIDS," said Dr. Jim Cheek, director of the Indian Health Service's Division of Epidemiology.

In epidemiological terms, it's called a tipping point, said Dr. Charlton Wilson, associate director of the HIV Center of Excellence at the Phoenix Indian Medical Center.

"When the right situations exist, when you have enough susceptible people and you introduce an agent . . . an epidemic occurs," Wilson said. "All those conditions are certainly there."

And Native Americans are already sicker, with the highest death rates of any race from diabetes, alcoholism, tuberculosis and other diseases, and many fear AIDS will exact a greater toll.

"They will fall faster," Vernon said.

Frank's family goes back generations in Kiana, one of 11 Inupiat villages in the Northwest Arctic Borough, more than 36,000 square miles in northwestern Alaska on the Chukchi Sea.

He worked with his father as a tugboat operator on the river, then at the small power plant and as a welder.

He loved being outdoors, trapping, hunting and fishing or trekking across the tundra, home to brown and grizzly bears, moose and caribou.

When the ice left in the spring and the salmonberries ripened, he fished for salmon, trout and sheefish, which can run more than 50 pounds.

And when the caribou migrated, he took his boat upriver and hunted them as they swam across.

"He was a total home boy," said his sister, Selina Moose, who lives in Anchorage.

No one would have predicted that Frank's story and the extraordinary reaction of his family and village would travel so far, making its way in a video to indigenous villages around the globe.

That winter of 2002, when Frank, 41, couldn't seem to get well, his family got worried.

Frank thought it was something like pneumonia.

"He said his legs were bothering him," said B.J. Richards, a friend and neighbor, who has trouble talking about those months. "Then he got a cold. He never complained."

Frank struggled through the winter, working to keep his balky stove going.

"That spring, my brother went to see him," Selina said. "He called me and said, 'You've got to come and get him.' "

Selina couldn't believe what she saw when she got to Kiana.

"He was so thin, so frail," she said.

They flew Frank to the Alaska Native Medical Center in Anchorage, where doctors began a series of tests, including one for HIV. It came back positive.

In fact, Frank had full-blown AIDS.

"I was shocked," Selina said. "Frank said he just wanted to die."

The first cases of what would later be called AIDS appeared in the United States in 1981 among gay men in California. Now, more than 500,000 people have died.

The introduction of new drug regimens in 1995 greatly reduced the death rate and the number of new cases, but both are rising again. And heterosexual transmission, which was 3 percent in 1985, increased to 31 percent in 2003.

Some believe the number of Native American cases are already higher than reported because some people are misclassified as another race.

"I've always been skeptical of the low numbers," said Ron Rowell, a Choctaw with a master's degree in public health who founded the National Native American AIDS Prevention Center in 1988.

"If you look at all of the data we do have, the rates of syphilis, gonorrhea, chlamydia, hepatitis, IV drug use, alcoholism . . . everything points to a major problem.

"How can you argue there's not a direct link? How are we all of a sudden not susceptible, that we won't be decimated like they are in Africa?"



But Cheek, of the Indian Health Service, said he doesn't think the situation will be as devastating as in Africa, where millions have died and more than 25 percent of the population is infected, or Thailand, where rates were soaring until a widespread safe-sex campaign took effect.

"We're all aware of what happened in some of the other areas of the world," Cheek said. "We're aware of the potential for rapid increases. There's not a lot that people have found to stop it before it happens.

"In sub-Saharan Africa, the train was moving so fast and was so big, there was practically nothing that could be done. We don't think we're going to be in that situation here with Indians."

In the depth of her grief over Frank's diagnosis, Selina realized the threat to the village.

"He had relations with women here in the village," she said. "His contacts are all here."

Meaning he had contracted the virus from someone else in the village. And maybe passed it on.

Selina said Frank was a shy person.

"But when people get drunk, everybody gets loose," she said. "There is a lot of drinking and promiscuity."

With Frank's permission, Selina flew back to the village the first week of June and met with their family members.

And they told Ben Atoruk, 56, president of the Kiana Traditional Council.

"I said, 'This dreadful disease could wipe out Kiana in a few years,' " he said. "We need to tell everybody about it.

"I was a hospital corpsman in the Navy, so I had a good idea about disease, how you control and prevent it," Atoruk said. "I was aware of Africa and the orphans I had seen on TV. I knew it wouldn't take long for that to happen here.

"I knew it was killing people. I knew there would be fear."

Frank's family members decided to do the unthinkable. They decided to talk.

Earlier, there had been a case in another village that had caused such hysteria that planes bringing mail, food and supplies wouldn't land, and the village had to change its name.

"I worried the village wouldn't want us around, that they wouldn't want Frank around, that the whole family would be shunned," Selina said. "But we couldn't have blood on our hands."

They planned a meeting and told Vera Morris, 52, a cousin of Selina and a bookkeeper for the Kiana Traditional Council, who worried about having counselors available.

"We had a suicide problem," Morris said. "And we thought, 'What if a person suspects he has AIDS and is already suicidal, and then it happens?'

"We wondered what neighboring villages would think."

They brought in the regional mayor, a public health nurse, the state epidemiologist, a spiritual leader and a lab technician to take blood samples.

On the morning of the meeting, Selina and her family got together and prayed.

"I started crying. I was so scared," Selina said. "I thought, 'What are we doing?' "

Selina started the meeting talking about her parents, Cora and Harold Gooden, and their Inupiat values, how the village had to work together to help everyone survive.

"Then she said Frank had AIDS," said Ruth Sandvik, 76, who runs a general store in the village. "People were crying."

Selina urged people to get tested.

"I think for a moment people forgot their little fights, forgot their squabbles, the idea they hate so-and-so," Selina said. "They knew there was something more devastating out there. They knew Frank was going to die."

They closed the meeting with a prayer.

More than 45 people lined up at the clinic after the meeting to be tested, many concerned they could have been exposed, some in a show of support for the family.

"I didn't see fear," said Charlie Curtis, a tribal leader. "People said, 'I'm going to get in line, too. I need to know.' "

There were several positives.

"One mother called me and thanked me for saving her son's life," Selina said. "He was positive, and he got medications that can help him live a long time."

Because Native cases make up less than 1 percent of the total, they are often only a footnote in discussions of the disease.

There were 3,026 Indians diagnosed with AIDS through 2003, compared with 376,834 Anglos.

Marsha Martin, executive director of AIDS Action in Washington, D.C., said focusing only on the numbers misses the point.

"We don't want to argue about the numbers being too low," Martin said. "Five cases on a reservation that are undetected are not good."

One case in Alaska can damage a whole village, she said.

"It's not rural. It's remote," she said. "You get a case of HIV in a remote area, and that HIV is gonna travel around."

After the meeting in Kiana, word quickly spread through neighboring villages, rumors started to fly, people got frightened.

"People were saying everybody in Kiana had it," said Michael Covone, program manager for HIV/AIDS prevention at the Alaska Native Health Board. "It was good gossip."

The group quickly organized educational town halls.

"We thought, 'The stuff's going to hit the fan. This never goes well,' " Covone said. "But once we were out there, we realized they did the right thing."

Ella Jones, a spiritual leader with the Maniilaq Association, a regional non-profit tribal consortium that provides health, tribal and social services to residents of rural northwestern Alaska, would remind those gathered that Frank's family had given them a gift.

"You could see the realization wash over them," Covone said. "Everybody softened."

Eventually, the group made a video about the situation, called Breaking the Silence, which has been shown to Natives across Alaska and the contiguous 48 states, along with Samoans, Hawaiians, First Nations in Canada and Australians.

"They were so impressed with the risks you've taken and the courage you've shown," Covone told village members recently. "Every village around here has this. Only Kiana came out."

Covone said that Native Americans in Montana called Selina a "runner," like those in the past sent from a village with illness to tell other communities. The runners often risked death or shunning from those fearing they carried the disease.

Martin, of AIDS Action, said it is hard to predict the future.

"The life of an epidemic is 400 years," Martin said. "Epidemics have wiped out people for centuries, and at the beginning, we had no idea how they would play out."

In the lifespan of an epidemic, AIDS, which surfaced in the 1980s is still young and has already killed more than 20 million people, surpassing any single cause of death in modern history.

Rowell said the implications are terrifying. "Our struggle is, as it has been for so long, a struggle for survival as a people," Rowell said. "We are not being alarmist when we raise the potential of another demographic collapse due to AIDS and the disappearance of entire indigenous cultures.

"An epidemic that primarily affects those individuals in their most fecund years can destroy a tribe's future. It has happened before in our history, and it can happen again."


By October, Frank had gone through months of treatment and blood transfusions in Anchorage. He wanted to go home.

"His doctor told him, 'You know, Frank, if you go home, you're going home to die,' " Selina said. "He said, 'I know.' "

The doctor thought he would live about a month.

"So I brought him home," Selina said. "I think it was the best thing I ever did."

Health workers showed family members how to care for Frank. They sent a hospital bed for him and told Selina to call if she needed anything.

They flew back home, where there was hot caribou soup waiting when they got to Frank's house, the house where his parents had lived.

Frank and Selina would sit, drink coffee and look out the window at the Kobuk River flowing by. Frank would tell her stories their father had told him about people hunting for gold in the tundra.

Friends came by to visit and brought fish and berries.

Frank died at noon on Dec. 1, 2002, World AIDS Day.

Selina was in Anchorage giving a speech on the disease.

"He was asking for me," Selina said. "He said I should come home."

The men in the village carved a coffin, and the women lined it with satin as blue as the waters of the Kobuk River.

They buried Frank in the frozen tundra.

This year, on Memorial Day, Selina invited the village to a picnic at the graveyard, renewing an annual tradition that had died.

"We're here to celebrate the passing of friends and relatives," she told the 100 people who gathered, "and to honor the village of Kiana."

"Kiana is a kinder, humbler place," Selina said. "Nobody ever heard of Kiana before. We stood on our values, did what was right, and we made an impact around the world.

"I'm so proud to be called katyaag mi, a person from Kiana."