amfAR, The Foundation for AIDS Research

March 20 is National Native HIV/AIDS Awareness Day

An interview with Native HIV/AIDS awareness advocate Isadore Boni

The rate of new HIV infections among American Indians and Alaskan Natives is on the rise.  March 20 is National Native HIV/AIDS Awareness Day, a day to bring renewed attention to the important issue of HIV/AIDS among American Indians and Alaskan Natives.

national native hiv aids awareness day
2011 National Native HIV/AIDS Awareness Day red balloon release 

Isadore Boni, an HIV-positive, openly gay man from the San Carlos Apache Tribe in Arizona, is working to do just that.  Diagnosed with HIV and hepatitis C in 2002, he has since become a voice for HIV-positive Natives around the country as well as a half-marathon runner.  After years of educating people outside the reservation, he was finally given approval to bring AIDS education to the San Carlos Apache Tribe’s reservation on National Native American AIDS Awareness Day in 2010. 

Today Boni’s goal is to get those incarcerated in tribal jails the medications they need to live.  “I knew at an early age that something big was going to happen and this is it.  I believe I did not choose this.  I believe I was chosen,” said Boni.  In March, ahead of National Native HIV/AIDS Awareness Day, he spoke with amfAR about the issues Native people face in accessing testing and treatment, as well as the HIV confidentiality law he is working to get passed.

national native hiv aids awareness day
Native HIV/AIDS awareness advocate Isadore Boni 

amfAR:  When did you find out you were HIV positive?

Isadore Boni:  After my first experimentation with crystal meth in the late 90s, I began having HIV-related symptoms—unending colds, fevers, and swollen glands.  I suspected the virus but was in complete denial.  Finally, on May 2, 2002, I built up enough courage to walk into an HIV clinic to get tested.  I went to the Phoenix Indian Medical Center but was very fearful because members of my tribe and family were employed there.  I thought I was going to be outed.  I made sure there was no traffic around the area before even walking into the building.  I was that paranoid of the fear and stigma long before getting tested. 

amfAR:  Is stigma still a major issue in Native communities?

Boni:  Absolutely.  Stigma is the reason that people do not get educated, tested, or receive care.  It contributes to higher death rates for those who are diagnosed with HIV in Indian country.  One of the first things I did to counter stigma was to enter the Phoenix Native American Recognition Days Parade in 2005.  I had a banner that read “Isadore Boni AIDS Survivor”.  This was an eye-opener and began a dialogue.  But even after that, stigma remained a problem. 

The most painful experience I’ve had was in 2007 when my sister and I went to visit our brother in the intensive care unit of a hospital in Phoenix.  The nurse asked if we were sick and we said no, but I told her I had HIV.  She said, “You have to leave this hospital now.  I don’t want you getting our patients any sicker.”  My brother died a few days later.  

amfAR:  As you have said, fear of encountering a friend, relative, or acquaintance at a local health care facility can create concerns about confidentiality and deter people from accessing testing.  What is being done to quell fears surrounding privacy and encourage people to get tested?

Boni:  What I’ve done over the past few years was bring outside test providers to provide rapid testing for tribal members.  This is safer in terms of confidentiality, and the providers have the know-how when it comes to resources should anyone test positive. 

amfAR:  What else do you think needs to be done to improve services for American Indians and Alaskan Natives?

national native hiv aids awareness day  

Boni:  Overall, I think the main ingredient for improvement is funding, but that’s not enough.  Having competent people who are truly driven and “called” to serve people with HIV/AIDS is crucial.  In addition, more privacy and confidentiality trainings and laws should be incorporated into the books on reservations.  More education needs to be provided to the community by tribal members in their own language.  I know back home it’s hard to get people to be willing to step in front of an audience and talk about AIDS, even those working in the field.  Having a tribal council support prevention and education is crucial.

amfAR:  Can you tell us about the HIV confidentiality law you are working to get created and passed by the San Carlos Apache Tribal Council?

Boni:  Since going public in 2004 on local TV and being featured on other media outlets throughout the country, other tribal members have shared their diagnosis with me.  I had no idea that there were others who have had HIV much longer than me, and even others that have passed away without getting an HIV test or receiving treatment.  I heard horror stories about breaches of confidentiality taking place back home, even here in Phoenix, and I knew I had to do something on my reservation. 

Last summer I pushed to get a resolution [that goes beyond HIPAA regulations to protect privacy] drafted but it was not completed.  It sat there collecting dust until I was featured in another media outlet.  Finally, Indian Health Services reviewed it, and last week I received a final draft.  This will go to the tribe’s Health and Welfare Committee before going to the tribal council for passage.  I hope this will be done on or before National Native American AIDS Awareness Day next week.  I can’t go into details [about what’s in the resolution] until it is passed, but it will undoubtedly be a gift for our people and the first step toward a successful tribal HIV/AIDS program.  It’s been a brutal fight for me, and I’ve been the only one pushing for it to happen. 

amfAR:  What can someone who is reading this article, whether they are part of a Native community or not, do to help this cause?

Boni:  Share.  Open your eyes and hearts to people with HIV/AIDS.  Talk to us.  Include us.  Invite us.  Love and compassion are more powerful than all of the medications I’ve taken over the years.  Having an open mind and open heart for people who are positive can do wonders. 

To find a National Native HIV/AIDS Awareness Day event near you, click here.