Isadore Boni, San Carlos Apache, was diagnosed with HIV and hepatitis C in May 2002. After his disease escalated to AIDS in November 2004, he was cured of hepatitis C last year. Now he is an advocate for HIV prevention and HIV/AIDS treatment and care.

Victory at Last: Apache Activist Helps Pass HIV/AIDS Confidentiality Resolution

Eisa Ulen
7/17/13

A resolution in support of the Public Health and Safety Code of the San Carlos Apache Tribe (SCAT) has passed that will directly impact the lives of Natives living with HIV/AIDS. According to SCAT HIV/AIDS Coalition Chair and Public Health Emergency Preparedness Coordinator Anita L. Brock, this resolution should help curtail the spread of communicable infectious diseases such as HIV/AIDS. It offers tribal members “the system needed to continuously address the threat such diseases pose to the San Carlos Apache community,” Brock says. “The implementation of such a Code supports enforcement of public health responsibilities and the authority needed to identify the risk factors associated with the spread of infectious disease.”

According to HIV/AIDS activist Isadore Boni, a SCAT member and key supporter of the resolution, passage of this resolution does much more: “HIV/AIDS confidentiality is now in our health codes.”

Boni explains that this resolution “allows the protection and confidentiality of public health information and patient privacy, especially for those who have been infected by HIV/AIDS.” Another key component of this resolution, according to Boni, is that it renders HIV testing optional for SCAT members. “There was talk of doing mandatory testing,” he says, “but I advocated against it.”

According to Brock, who worked with the primary team in development of the code now in place, this new resolution benefits not just enrolled SCAT members, but Natives throughout Indian country. “The code adds to the infrastructure needed to make decisions that will benefit all tribal members,” she explains. “They will be the benefactors of a system which values their privacy and continuity of care. In addition, Indian country is quite vast with over 500 tribes, and each tribe may make this determination. From a purely public health perspective, the benefits are self-evident.”

The Centers for Disease Control (CDC) reports that American Indians and Alaska Natives ranked fifth in rates of HIV infection in 2011, “with lower rates than blacks/African Americans, Hispanics/Latinos, Native Hawaiians/Other Pacific Islanders, and people reporting multiple races, but higher rates than Asians and whites.” However, American Indians and Alaska Natives have poorer survival rates than all other ethnicities and races.

Boni believes the official CDC numbers documenting the rates of HIV infection among Natives may be significantly lower than the actual rates of HIV/AIDS throughout Indian country.

“I personally know more people on my reservation that have HIV than what our Indian Health Service has in San Carlos,” Boni claims. “People like me get tested in the city, so our numbers do not get counted, and agencies and even tribes do not share information. So how many people actually have HIV/AIDS?  No one really knows.”

Boni was diagnosed with HIV and Hepatitis C in 2002. He relocated to Phoenix, Arizona for treatment. “There was, and still are, no services for tribal members who are HIV positive on the reservation.” He says he was homeless in Phoenix for two years and lived on the streets, in halfway houses, and in shelters. He was beaten, and his medications were stolen. He worked as a laborer making minimum wage by day, to try to put together funds to pay for shelter and food at night. On World AIDS Day in 2004, Boni shared his story for the first time, and he has been a public advocate supporting the lives of HIV positive Natives ever since.

“Confidentiality has always been a problem on my reservation,” Boni says. “Many people have shared with me that their health information was disclosed without their consent.”   

Boni, who has a bachelor’s degree in social work from Arizona State University, goes on to say that privacy rules and regulations had not been in practice in San Carlos. “It got to a boiling point for me. I assertively pushed the San Carlos Health Department to do something about this.”

Partly due to his efforts, the resolution passed in time for National HIV Testing Day, in June of this year. “HIV disclosure is painful, not only for the individual but their families,” Boni explains. This new code protects them.

“I know the decision-makers in our health department are still clueless as to the impact HIV/AIDS has on our reservation,” Boni continues. “To them it’s not a priority, but I remind them over and over that this health crisis is serious. No San Carlos Apache tribal member should have to die of AIDS complications in order to prove that this is a problem. Period.”

Related:

Native AIDS Survivor Finds Empowerment Through Honesty, Fights for HIV Confidentiality Law

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