The Arizona Republic - December 29, 2003
Judy Nichols

The remote, isolated nature of many reservations protected the tribes from the disease for a time. The only cases they saw were people who were infected in urban settings returning home to die.

But in 2001, then-Surgeon General David Satcher called AIDS a ticking time bomb for Native Americans.

"We separated out the American Indian numbers, which had been looking like a flat line because they were so small compared to the others," Satcher has said. "And we saw that they were increasing rapidly."

Native infection rates are now 1.5 times the rate for Whites and climbing. More than 30 new cases were identified on the Navajo Reservation this year, including the first documented cases of transmission on the reservation. A push to develop a plan for education and testing has spurred the higher awareness.

The Centers for Disease Control and Prevention is closely tracking the numbers.

Emerson Scott, 37, who grew up on the Navajo Reservation, carries the mark of his days as a male prostitute in the crooked line of his nose.

"It was a fight, over a man. His girlfriend kicked me in the face."

Scott's life of drinking and hanging out in the bars in Gallup started after high school.

"I would change partners every two weeks," Scott said. "My father said, 'You could get disease from those guys.' He tried to protect me. I heard on the radio about AIDS, but I thought, 'That's not going to happen to me.' "

The AIDS risk for Native Americans has been underestimated because of a lack of testing, poor reporting and racial misidentification.

In 1986, there had been only one documented Native American case in Arizona, compared with 279 cases among whites, 27 among Hispanics and 13 among Blacks.

By 2001, Arizona ranked third in the number of Native American cases, with 219. California was first with 552, followed by Oklahoma, with 275.

Late diagnosis

Cases for all groups, including Native Americans, peaked in 1996, then dropped with the introduction of new drug therapies. But cases for all groups are on the rise again.

Today, Native Americans are infected with AIDS at a rate of 11.7 per 100,000, nearly 1 1/2 times the rate for Whites and more than twice the rate for Asians, according to the CDC. The highest rates are seen among Blacks and Hispanics.

Satcher said that not only are the infection rates higher, but death rates also are higher.

"I think it's a combination of later diagnosis and less access to aggressive treatment," Satcher said.

And the disease may be even more devastating in Native American populations because it comes on top of other health disparities, including much higher rates of diabetes, alcoholism, homicide, suicide and accidental death, said Jeanne Bertolli, senior epidemiologist in the Office of Health Disparity in the National Center for HIV, STD, and TB Prevention at the CDC. "Native people are vulnerable," Bertolli said. "The conditions exist that can allow the spread of the disease, including high rates of sexually transmitted infections and illicit drug use."

Living with AIDS

Scott fell into prostitution, using his street name Hershelle, ending up in motel rooms with different men.

"I got so I was doing it all the time."

He says he would be dead now if he hadn't met Jerry Archuleta, 50, a Pueblo from Taos.

Archuleta and Scott met in a bar and moved in together.

The two men were committed to each other. They stopped drinking.

Their diagnosis came in 1998. Neither had symptoms.

Scott is convinced he got the disease during his years on the street and infected Archuleta. But Archuleta's test came back positive first. Then Scott's, a few months later.

"I thought I was going to die in a few months," Scott said. "I thought his family would tell him to get rid of me. I thought they would say, 'Emerson, pack your clothes and go home.' "

Both Scott and Archuleta went on the standard drug therapy.

Archuleta developed neuropathy, nerve problems in his hands.

He started getting sicker. Eventually he quit work and is fighting for disability.

Scott is doing well.

"I see people I used to know on the street and they say, 'I thought you were dead,' " Scott said. "They say they're surprised that I'm sober."

Both fight depression.

"There's a lot of disease in this area," Scott said. "There are a lot of gay men who deny it.

"These guys say, 'Not me, I'm not going to get it.' I tell them, 'I've changed. I changed my life around.' I pass out condoms. I give them the phone number to Navajo AIDS Network."

Cases increasing

Twenty-four new HIV cases, including five women, were diagnosed on the Navajo Reservation last year, compared with 15 the year before, said Dr. Jonathan Iralu, chief clinical consultant for infections disease for the Navajo Area of the Indian Health Service.

Almost all of the cases are sexual transmissions, almost none from intravenous drug use, he said.

Iralu said he has been worried about HIV/AIDS since he walked in the door of the Gallup Indian Medical Center in 1994, but he became really concerned in 2001.

"A year ago there was evidence people were catching the virus on or near the reservation," he said. "Before that we blamed the cases on Phoenix, Albuquerque or Los Angeles."

The increasing number of cases worries Iralu, as does the spread to women, because it signals a widespread problem.

"Heterosexual transmission is a worrisome pattern in the developing world," Iralu said. "It's a sign of more general local spread, and it tells us that there's a risk of congenital spread from mother to child."

The Indian Health Service now asks all pregnant women to take an HIV test.

They also plan to make the test one they offer for all routine screening.

As in other health care facilities, patients must give their consent for the test.

Another marker of concern is an ongoing syphilis outbreak.

"Syphilis is often a marker for high-risk behavior and a predictor for an upsurge in HIV cases," Iralu said.

The Navajo Nation is running public service announcements about sexually transmitted diseases, which have prompted many people to come in for testing, Iralu said.

And the center does its own syphilis tests so patients can have the results before they leave.

Getting message out

Nothing much has changed since Satcher's time-bomb comment, said Arizona Rep. Jack Jackson Jr., a Navajo who served on President Clinton's AIDS advisory council. He has worked for years to combat the disease among Native Americans.

"The Indian Health Service still receives a historic shortfall in funding, and scarce resources are used elsewhere for bigger issues, like diabetes," Jackson said.

"Under this (Bush) administration, much of the funding used to look at HIV in communities of color and the gay community is no longer being distributed."

There is still a stigma on the reservation for those with AIDS, so many people don't get tested or reveal their status, said Dennis Manuelito of the National Native American AIDS Prevention Center.

And some men who have sex with men don't label themselves gay.

So education and prevention messages must be rewritten for each region where the group goes, Manuelito said.

"You can't say a Navajo is the same as a Lakota," he said. "Federal officials often see Native people as one race, but that's not fair."

Satcher said he is an optimist and hopes the messages are beginning to get through.

"But a lot of things are working against us," Satcher said. "There are more uninsured people now and states are cutting back on Medicaid, so there is less treatment."

Racial misidentification

Larry Kairaiuak, a Yup'ik Indian who works with the national group, said the number of cases is undercounted because of racial misidentification.

"In Arizona and New Mexico, many Native Americans have last names like Garcia or Gonzales, and health officials assume they are Latino or Hispanic," Kairaiuak said. "And there has been a lot of intermarriages and there are fair-skinned Natives who look Anglo and may be ID'd as Caucasian. And there are tribes who are very dark-skinned or mixed Indian and African-American, who are counted as African-American."

So the number of cases may be far higher than anyone knows.

Jackson said undercounting cases is a serious problem.

"The numbers don't reflect an adequate picture," Jackson said. "Many Indian people don't trust the Indian Health Service for confidentiality reasons so they're going off the reservation to be tested."

Manuelito said the outbreak on the Navajo Reservation is a double-edged sword.

"Without it, the tribe wouldn't have reached out to the CDC," said Manuelito, who is Navajo. "Now they are setting the tone for other tribes. We hope this is lessons learned."

The CDC report documenting transmission on the Navajo Reservation has jolted the tribe into creating new education programs. But Jackson worries that there is not enough being done.

"I fear the time bomb will go off," he said. "And it will be devastating in the Indian community."

Reach the reporter at judy.nichols@arizonarepublic.com.
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