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AIDS survivor brings education and testing to San Carlos reservation

SAN CARLOS, Ariz. – Isadore Boni has a question: How many American Indians have to die from AIDS-related complications before education is brought to rural tribal communities in Arizona and throughout the U.S.?

Boni, a San Carlos Apache, has a bachelor’s degree in social work from Arizona State University and after graduating chose to return to his reservation to work. In denial about HIV/AIDS in his community, he believed the disease hadn’t yet infected any members of his reservation.

Then in 2002, after experimenting with crystal methamphetamine and alcohol he made some bad decisions. Those decisions led to him being diagnosed with AIDS and Hepatitis C and eventually, because of the stigma attached to AIDS, he ended up living on the streets of Phoenix.

In a matter of a few short months he went from a position of respect in his community to one of disgrace. His mission now is simple, to bring education and awareness of the disease into American Indian communities. Boni approached the reservation’s health director last year and was informed there had not been much training on HIV/AIDS since his diagnosis.

“She asked me what the symptoms of HIV are and I sat there puzzled by her question. I was offended because as a health director I felt she should have known more about this disease than I do.”

Meeting with the tribal council and chairman, who were supportive of his efforts, Boni arranged for the Southwest Center for HIV to teach HIV101 on the reservation. Boni hopes tribal employees from different departments who have direct contact with tribal members will attend; including law enforcement and tribal administration.

Boni attended the most recent San Carlos AIDS Task Force meeting and will be the opening speaker on National Native American HIV/AIDS Awareness Day March 18 at the Apache Gold Casino. In addition to bringing the HIV101 class to the reservation, another agency will be on hand to provide rapid testing which Boni said his tribe does not offer. “There is a whole grey area about HIV and AIDS that hasn’t been addressed yet, and this is just the first step.”

Isadore Boni after completing the P.F. Chang Rock & Roll 1/2 Marathon Jan. 17. Boni's finishing time was 2 hours 39 minutes. He ran the marathon in memory of those who died and for HIV/AIDS awareness.

The other event he is coordinating is the second annual HIV/AIDS candlelight vigil being held March 19 at the Steele Indian School Park in Phoenix at 6:30 p.m. The theme of this year’s vigil is “Remember Their Names.” Boni said about 40 people attended last year’s event and shared their struggles with the disease. The vigil ends with the song “In the Arms of the Angels” in memory of those who have lost the battle with AIDS. A touching experience according to Boni, this event moves people in a way that is different from other gatherings.

“As educated as I was, I always thought that HIV/AIDS was ‘over there,’ not here,” he said. “Do I know who infected me? Yes. How do I feel about that person? I have to take responsibility for anything that happens to me. Once I owned that responsibility it was then easier for me to accept. I lived in the closet for two years after my diagnosis. I became a professional liar; I lied to myself, my Creator and my family. I couldn’t live with the shame until I finally had enough.”

Boni said when services were being cut for HIV/AIDS patients in Phoenix in 2004 he decided it was time for him to go public with his story. He was able to eventually get off the streets and return home to his people. Today, he continues to share his personal journey hoping to make a difference in the way people with the disease are treated. “Hopefully people realize how close to home it really is and that it can happen to them, their friends and family.”

Boni said his health today is unbelievably good. He ran a half marathon last month, lifts weights and is training for a full marathon run of 26 miles. He also eats healthier; he went from eating fry bread to whole grain bread and from apple pie to fresh apples. In addition to his daily medications for AIDS and Hepatitis C, he also takes vitamins.

Since 2002, Boni said the mood surrounding his HIV/AIDS diagnosis has changed. “When I first went public it was like a grieving process, but in time people start accepting and are more willing to listen.”

Boni is a regular guest lecturer at Arizona State University and has corresponded with President Barack Obama. “I told the president how much Indian communities need funding for education and services. American Indians have the third highest rate of infection according to the Centers for Disease Control and we have the shortest lifespan overall of people who are infected with HIV/AIDS.

“It is hard living with AIDS, especially today when the government is fighting over what is a priority and our Indian community has been cut from that list. I am trying to make life for people with AIDS a little easier by reducing the fear and stigma associated with this disease. The only way I know how is to tell my story.

“Being honest is what sobered me up and got my life back in order again. People ask me why I’m doing this, what keeps me going? My answer is this: It’s in my blood.”

For more information about Isadore Boni visit his Web site. Boni can be reached by e-mail at isadoreboni@yahoo.com or by calling (602) 377-6350.