Strength in Story Sharing: Asian American, Native Hawaiian and Pacific Islander HIV/AIDS Awareness Day

By Joe Drungil on May 16, 2014 in HIV/AIDS Awareness Days

Jacob_Smith_YangBy Jacob Smith Yang
Capacity Building Director
Asian & Pacific Islander American Health Forum

I confess. As a former executive director of a small organization in Boston, I once faced the prospect of Asian American, Native Hawaiian and Pacific Islander (AA and NHPI) HIV/AIDS Awareness Day with a twinge of dread each May 19.

Our organization worked with a number of AAs and NHPIs living with HIV/AIDS. Each of them had amazing, compelling stories of learning about their HIV statuses, struggling with disclosing their status, seeking and receiving support, and accessing care and services. My staff and I all knew firsthand the bravery and perseverance of each of these people.

Yet for the longest time, we couldn’t identify one person who was willing to speak publicly about her or his experiences. We knew that telling these stories had the potential to transform people’s hearts and minds about HIV/AIDS in our communities.

In fact, for many years we could not even successfully bring together the minimum of four AA and NHPI people living with HIV/AIDS (PLWHA) required for our Consumer Advisory Board (CAB). HIV positive members of our community would initially agree to come, but at the last minute, they would not attend. Talking to them, we realized that the idea of walking into a room and immediately disclosing such a private part of your life—your HIV status—to complete strangers was understandably daunting.

By 2005, things began changing. Groups like the Asian & Pacific Islander Wellness Center’s Banyan Tree Project (BTP) worked to raise the visibility of PLWHA as a way to decrease societal stigma. BTP brought a national media campaign and resources that we previously could only have dreamed of. Finally, we started to see a shift. In 2007, we had a consumer advisory board meeting where three AA and NHPI PLWHA attended! The fact that they were comfortable and trusted us to be supportive was gratifying. We strategized ways to decrease stigma and improve access to services. And together we came up with plans that worked for the community at large and for them—an important goal in all my work.

The following year, one of our CAB meeting attendees spoke at our local press conference for National AA and NHPI HIV/AIDS Awareness Day. He relayed his incredible journey, including delaying getting an HIV test that he long-suspected he needed until his illness and symptoms prevented him from walking. He could not face the prospect of what his neighbors and community might say about his family if they knew he was HIV positive. Others were inspired by his story and his courage and became committed to talking publicly about their lives.

While we have continued to make progress since then, there is still much to do. One in 4 AA and NHPI PLWHA are unaware they are infected with HIV. Thirty-six percent of HIV diagnoses among AAs and NHPIs progressed to AIDS in less than 12 months in 2010. Early testing and access to treatment can change that.

As capacity building director at the Asian & Pacific Islander American Health Forum, I work to make HIV/AIDS programs and organizations stronger. I work as part of a national program called Capacity for Health (C4H), which provides free capacity building assistance across the United States and its affiliated territories. Funded for more than 20 years by the CDC, C4H works with health departments, community-based organizations, and programs across all racial/ethnic groups to help reduce the spread of HIV/AIDS.

Each day, I carry with me the stories of AA and NHPI PLWHA from Boston, and how their lives have changed. I gain strength and perspective now hearing the
personal narratives of diverse PLWHA all around the country. These stories continue to move, surprise, frustrate, and ground me.

This May 19, I’m inspired by each and every one of the 9,672 AAs and NHPIs diagnosed with HIV/AIDS in this country. And I remain ever committed to helping all communities encourage people to learn their HIV status and find the care and support they need. They are not alone.

Jacob Smith Yang is the former executive director of Massachusetts Asian & Pacific Islanders (MAP) for Health, and has worked on HIV/AIDS issues since 1991.

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