Selina Moose, now 48, called a meeting in 2002 in her Alaskan village of Kiana (population 388), which is accessible only by plane, to tell its close-knit residents that her brother Frank had AIDS. “I cried before the meeting. I was afraid they might kick us out of the village,” Moose says today. Indeed, stigma is rampant in many Native-American communities. Another Alaskan village was forced to change its name after delivery planes refused to fly in due to unfounded rumors of a local epidemic. Kiana, though, embraced Frank, who died shortly after the meeting.

Moose and other native leaders are still combating AIDS ignorance and the feds’ slow response to their HIV rates: 11.5 per 100,000, 40% higher than Caucasians. In May, Embracing Our Traditions, the first national conference on HIV and Native Americans, held in Anchorage, aimed to increase awareness. The nearly 1,000 attendees, from 600 sovereign native nations, discussed cultural-specific strategies to fight HIV, such as offering elders HIV education.

Native Americans receive 40% less federal health care funds per capita than any other ethnic, social or sexual minority, including prison inmates. Before 1990, the approximately 4.5 million Native Americans didn’t have a national census category, making infection rates even harder to pinpoint. Their poverty rate, the highest among any ethnic group, fuels a high incidence of substance abuse and STDs, conditions that experts believe could further ignite HIV within their insular, rural communities. “The Centers for Disease Control [CDC] have left Native Americans out of the story, and communities aren’t dealing with it,” says Michael Covone of the Alaska Native Tribal Health Consortium. Timothy Mastro, MD, director of HIV prevention at the CDC, says, “The CDC funds programs that help tribes develop their HIV services.”

Indian Health Services (IHS) clinics, which are federally funded at only 50% of estimated need, often lack essential HIV resources. However, when Native Americans approach other federal programs, they are often rejected and told to try IHS. “IHS is already funded at an austere level, and HIV is a very expensive disease,” says Charlton Wilson, MD, associate director of the IHS-funded Indian Medical Center in Phoenix. “Many clinics have to limit their services to primary care.”

The Ryan White Care Act, which provides nearly all federal funds for domestic HIV treatment, mentioned Native Americans under one poorly funded provision to help remote communities, but the Act’s proposed renewal, makes IHS facilities eligible for Care Act funds and requires Native representatives on all relevant boards.

Advocates are waiting to see what benefit, if any, the changes will bring. “Only a handful of people stepped up to push for this,” says Brandy Tomhave, who worked with Senator Jeff Bingaman (D-New Mexico) to lobby for the change. “Native American communities have got to wake up.” Says Melvin Harrison who founded the Navajo AIDS Network, “We’re always left off decision-making tables, so a lot of people won’t even go to the table. I decided no matter how they treat me, I will be at the table.” So will Moose, who filmed a documentary about her brother’s experience, Breaking the Silence, Strengthening the Spirit, clips of which were screened at the conference. She says that when she told her neighbors about Frank, “A lot of them cried too. But now, they aren’t as afraid as other villages. They know more about it.”