For people of the Navajo Nation, AIDS has long been thought of as a white man’s disease; an illness that struck others, off of the reservation.
But over the last decade, the number of new HIV infections among Navajos has doubled. And something else that’s new: AIDS is now very much on the reservation itself, which means Navajos are infecting Navajos.
After Kevan Scott told friends and family on the Navajo Nation about his HIV positive diagnosis, he felt shunned by many of them.
"We were taught to be afraid of it," Scott said. "We were told 'HIV stay away.'"
So Scott left the reservation and moved five hours south, to the big city of Mesa, Ariz. He hoped to find a more accepting community. Scott is 22 and gay. And he’s more cautious these days.
"I’m selective with who I tell now because of (the stigma)," Scott said.
Doctors reported 35 cases in the Navajo area in 2010, up from 15 cases in 2000. And those are the numbers they know about. Among American Indians as a whole, one in four who are HIV-positive remain unaware they are infected, according to the Centers for Disease Control and Prevention. Many are gay men, but almost 40 percent of new cases on the Navajo Nation are straight women.
The stigma is everywhere. But it’s especially shameful among traditional Navajos. Melvin Harrison, of the Navajo AIDS Network, says more than half of his clients haven’t told their loved ones.
"I think it’s the rejection that really puts a barrier on our folks of coming forward to get tested, to get treatment,” Harrison said. “Because people don’t want to get rejected by their own loved ones."
When he started AIDS awareness work on the reservation back in the 1980s, Harrison said denial was prevalent.
"If you talk to my wife, there were days I would come home with tears running down my face,” Harrison said. “And say: 'Oh my God, I was really hammered today, you know, and sometimes I think I’m not going back out there.'"
Even today, he says, many people have never heard of HIV until they are diagnosed.
Part of Harrison’s job is educating about the dangers of unprotected sex and substance abuse. But that’s especially difficult with traditional Navajos. They believe if bad outcomes are discussed, it helps make them come true.
"Many of my elders say: 'Son, this is something we don’t talk about. It’s not here. It’s not going to come here. If you talk about it, you’re wishing it on our people,'” Harrison said. “That’s what I was told."
It’s frustrating, he said, because so many people still live in denial.
Mark Lacy runs the Shandiin Project at Flagstaff Medical Center, where people can be tested, treated and find support. Shandiin means "sunray" in Navajo.
Lacy is an infectious disease specialist. He hopes to shed light on a problem that’s been kept in the dark.
"Because shame in the culture has a different role, sometimes people think (they) got what (they) deserved,” Lacy said. “(They’re) not going to try to reverse the consequences of what (they) got."
And sometimes people would rather die than face their diagnosis. The death rate for American Indians with HIV is twice that for whites.
But these days, of course, you don’t have to die just because you have HIV.
Fortunately for Kevan Scott, he started treatment just in time. But he says the quality of his life has changed dramatically. Not just the move far away from home, but the treatment itself. The medication causes insomnia, twitching, loss of appetite, heartburn and depression.
"That drug cocktail, it’s a punch every time," Scott said.
Tribes are holding the first National Native HIV/AIDS Awareness Day on March 20th in the hopes of getting more people tested and treated.