Native AIDS Survivor Finds Empowerment Through Honesty, Fights for HIV Confidentiality Law
Isadore Boni, a San Carlos Apache member and AIDS survivor, completed his fourth half-marathon at his personal best time of two hours and 15 minutes on January 20.
“Nothing compares to it, nothing!” Boni wrote in an email to Indian Country Today Media Network. “I trained since last summer by changing my diet, walking, hiking and eventually running. I was ready for this. I know many people didn’t think people with AIDS could or should run, so I had to prove that we can do anything if we discipline ourselves to get the job done.”
Boni 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 tours the state of Arizona as an educator for HIV prevention, and most recently ran PF Chang’s Rock & Roll 1/2 Marathon in Phoenix in memory of Native people who have died of AIDS complications. “This half marathon has always been a ‘prayer run’ for me,” Boni said. “During the run, I pray for those who passed on, their survivors, others living with HIV/AIDS. Next January, I plan to run the entire 26-mile marathon!”
The openly gay Boni aims to reduce the stigma attached to HIV/AIDS victims in Native American communities. He knows that stigma firsthand. “After I went public in 2004 on local TV, many tribal members and tribal council leaders downright rejected me,” Boni recalled. “I fought back. I took matters into my own hands and ‘went Erin Brockovich’ when I had to.”
He feels his vocal role in the AIDS fight is sparking conversations about the disease and reducing bias. “I empowered myself by getting healthy and shared my story throughout the country and in other media outlets,” he said. “The more honest I was, the stronger I became. I brought AIDS education to my tribe for the first time in 2010 and have been providing education and training ever since.”
Boni, who already serves on the National Native American AIDS Prevention Center’s Community Advisory Council, is now working to get a HIV confidentiality law created and passed by the San Carlos Apache Tribal Council. “It’s stalling right now in the health department, so I have to keep pushing,” he said. “It’s challenging and exhausting
—physically, emotionally and especially financially."
Boni stressed that these efforts need to continue on a national front and across all tribal communities in Indian country. He also underscored that prevention is only one aspect of minimizing the effects of HIV/AIDS. “For too many people it’s too late,” he said. “What are we doing to help prolong lives for those who are positive? Without funding, many of these services cannot be provided for the survival of our people.”
The scenarios seem endless. “What happens to those who test positive on an isolated reservation?” Boni asked. “Will services be provided? Who will transport to medical care, follow-up [appointments] and support services? How will people who are detained in tribal jails be treated if they are positive? Will they receive medications? Do tribes have HIV confidentiality laws in place? What happens if this law is broken?”
Ultimately, Boni sees himself as a resource. “Throughout the years many Natives across the country have contacted me via email or social media and disclosed their status and their struggles,” he said. “I try to be of support for them and visit them when they become too sick to get out of bed. What I wish I could do is announce on speaker phone to Indian country that there is hope for people who are positive. I think I am living proof that anything is possible.”
Below, Boni shares a message from the top of Camelback Mountain in Phoenix, Arizona on September 17, 2012: