March 20 marks National Native AIDS Day, set to coincide with the spring equinox. Created to promote HIV testing in Native communities and decrease the stigma surrounding the disease, the day also casts light on the challenges of addressing the spread of the human immunodeficiency virus (HIV) and acquired immune deficiency syndrome (AIDS) in Native communities.
People working to combat HIV in Indian Country are faced with a double whammy: infection rates are on the rise, but funding sources to fight the epidemic are drying up. And while many reservations can attest to the ongoing epidemic, national data are lacking to convince the federal government that the problem in Indian Country deserves increasing attention—and increasingly precious funds.
The bottleneck is due in part to a major national policy shift announced in mid-2010, when the White House released its “National HIV/AIDS Strategy.” The centerpiece of the policy, more frugal than those before it, looks smart enough, with a primary goal to “intensify HIV prevention in the communities where HIV is most heavily concentrated,” according to materials released by the Centers for Disease Control and Prevention. It happens that HIV rates are highest in cities—which means funds are being diverted away from rural and more sparsely populated areas. Those areas include most Indian nations, says Robert Foley, CEO of the National Native American AIDS Prevention Center (NNAAPC), a Denver, Colorado-based nonprofit group.
“State heath departments in Idaho. Wyoming, North Dakota and other states with large Native populations are now seeing 10-15 percent drops in HIV prevention budgets, with up to 33 percent projected,” he said. “Organizations within those states will have decreased access to HIV prevention dollars.”
Research Still Out
The federal cuts come at a time when research isn’t in yet to prove the efficacy of behavior-based intervention programs, which coach people about effective strategies to avoid acquiring the HIV virus and transmitting it if they’re already infected. And those are the programs that work best in Indian Country, Foley believes.
The National Institutes of Health and Indian Health Service have begun a study to nail down whether such programs work in a statistically verifiable way, but the results aren’t in yet—so it’s difficult to argue for funding for them, Foley said.
“Now there’s a de-emphasis on behavioral interventions,” he said. “We could potentially end up with data that show this works, but we could end up with no resources to do it.”
Lack of concrete data about what works in Indian Country is just one missing piece of a compelling case for federal funds—there are precious few data to even document the extent of the problem, says Melvin Harrison, founding executive director of the Navajo AIDS Network, or NAN.
Harrison’s nonprofit organization has been in operation since 1990. He and his staff of six offer rapid HIV testing, where people can find out an early result in about 10 minutes. They take educational messages to schools and chapter houses, on request. Within the past few months, two NAN case managers have begun working with HIV-positive clients; they now provide the only medical case management service on the Navajo Nation. And on a limited basis, the staff members offer trainings for health care workers who interact with the highest-risk population for HIV—men who have sex with men—as well as transgender people and HIV-positive patients.
The organization is big into advocacy work. Harrison just returned from a trip to Minnesota, where he was reaching out to members of other tribes who might be willing to help put together a coalition to advocate for Native HIV work at the federal level.
“It’s difficult to get funding when you don’t have someone sitting at the table in Washington,” he said, adding that part of the problem is inadequate data showing basic infection rates and the need for programs on Indian nations.
HIV cases are on the rise on the Navajo Nation, and they’re not necessarily following national trends.
“In 2010, new rates were highest among women on Navajo,” Harrison said. He said that could be because women are more likely to get tested, and testing is more readily available now. But data are scarce for many other tribes.
“Our numbers are so fragmented across the country,” he said. “There’s miscatagorizing, there’s underreporting. We’ve got to get the government to help us with the data issues.”
Despite Stigma, Work Must Go On
Harrison said the fact that people are still reluctant to talk about HIV and AIDS compounds the data collection problem: Nobody talks about HIV in the tribal government; it’s too complex,” he said. “There’s homophobia. There’s HIV phobia. There’s AIDS phobia. There’s transgender phobia. It’s really frustrating.”
He says the work is tough for he and his staff of six. Early on, elders told him not to do the work because they believed that to speak of AIDS was to invite it.
“They said, ���It’s not here and you’re wishing it on us.’ I said, ‘It is here. We have four cases.’ We still get told that.”
Harrison said his staff members routinely get laughed at. People frequently assume he’s either gay or HIV-positive—he’s neither.
“My wife and I were treated pretty awful,” he said. “It was sad. I’ve been through the mill doing this work. “
He saw it as a positive thing that NAN was invited to participate in a conference call with the federal Department of Health and Human Services in late February; during that call, among other topics, he aired the need for help with data collection so funding sources might become more secure.
Meanwhile, NAN continues working on the Navajo Nation to raise awareness about the risks and realities of HIV and AIDS. A March 10 event in Chinle commemorated National Women and Girls’ HIV Awareness Day. And today, March 20, for National Native HIV AIDS Awareness Day, NAN workers will get Navajo school children to fill out cards showing what they’ll do to help stop the epidemic. The cards will be attached to balloons, and then released. This evening, comedian and hypnotist Dr. Kevin Foley and the James and Ernie comedy duo will be the headline acts at an evening dubbed “Hope Through Laughter.” Anonymous HIV testing will be offered throughout the event.
And the HIS-NIH studies are underway at five Native American Research Centers for Health (NARCH) facilities across Indian Country, to demonstrate whether the community-based programs employed across Indian Country work like Foley believes they do. They include Street Smart, a collaborative project of NNAAPC and the Great Plains Tribal Chairman’s Health Board in Rapid City to bring culturally sensitive HIV awareness and education to youth in nearby Native communities.
The NNAAPC’s Foley said other successful programs are struggling to keep their funding, including trainings through the federal Office of Women’s Health for health care workers treating HIV-affected Cherokee tribal members and Native Alaskans. Another is a program out of Salish-Kootenai College in Montana, which offers classes for women and girls on HIV risk when it comes to dating and relationships. The NNAAPC itself runs retreats called Native Women Speaking, for Native women on reservations. During those sessions, traditional healers help teach participants what it means to be a Native woman, and how that impacts HIV risk.
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Foley said there’s still a rallying cry to be made. The federal policy shift is an “external challenge,” he said, and NNAAPC and like-minded organizations will continue to try to reverse it—but there’s plenty Native communities can do to fight from inside their tribes.
“As long as there are people facing discrimination or fear of discrimination because of their gay identity, their bisexual identity, their transgender identity, their Two Spirit identity … as long as communities aren’t setting aside their own resources internally for prevention and intervention programs, then we’re creating barriers internally,” he said.
“We have some tribes that are doing wonderful things like the Navajo Nation, the White Earth Reservation,” he added. But because ongoing stigma, “there are still some tribes that are five years behind the rest of the country when it comes to HIV prevention.”