HIV/AIDS Healthcare: The Ties that Bind and Divide the Asian Pacific American Community

At two-years-old Heather, 28, fled the war-torn country of Burma seeing causalities along the journey with her family to a refugee camp in Thailand.

Heather, a pseudonym used to protect her identity, says even while growing up in a refugee camp she always held on to her one dream.

"I wanted to be a good mom," she said through a translator. "That's all.”

A "dirty needle" used by a traveling backpack medic to administer a vaccine, she says, would change her life. At the age of 25, Heather discovered she was HIV positive. The diagnosis sent Heather into depression. However, when she read HIV/AIDS education materials available in the camp she realized her diagnosis was not a death sentence.

Her dreams of motherhood would come true. She has two children, who are now 9 and 4 years old, with her husband. Heather's children and husband are are all HIV negative.

The family applied for refugee status and was eventually given permission to move to California in 2007. Her parents were left behind in the refugee camp. It was there her father died a few months ago.

Now living in the Bay Area with her husband and two children, Heather says she sometimes worries about her children becoming negatively impacted by her HIV status and the stigmatization the virus carries in the tight-knit Burmese American community.

"Maybe they [will] become like depressed about this status because the community is not supporting anything about this virus," she said.

Heather is one of 4,053 Asian Pacific Americans living in California with HIV/AIDS, according to a June 30, 2011, report by the California Department of Public Health’s Office of AIDS. But Heather says she specifically identifies as Burmese and without the help of a Burmese-speaking caseworker, navigating the healthcare system can be confusing.

To address the needs of Burmese immigrants who are living with HIV/AIDS in the Bay Area the organizations Street Level Health Project and Community Health for Asian Americans (CHAA) teamed up for a pilot program that began last year with about 25 individuals who are living with the disease. There are 19,439 Burmese in the country as of 2010, according to the U.S. Census Bureau.

Organizers of the pilot program hope to address the specific needs the Asian Pacific American subgroups like the Burmese community faces in accessing HIV/AIDS healthcare in the Bay Area.

"I think they're in and out of treatment or they get substandard treatment because of language issues," said Sean Kirkpatrick, CHAA associate director. "A lot of what they've been asking for in meetings is some dedicated language support and to help them navigate, not just health care, but social services and other kinds of things that they need."

To bring to light the differences and similarities Asian Pacific American subgroups face in accessing HIV/AIDS healthcare, the Banyan Tree Project is holding the National Asian & Pacific Islander HIV/AIDS Awareness Day on May 19. Last year 33 events were held nationwide to raise awareness about the day.

"This year we decided to go a different direction and produce a series of digital stories from community members," said Sapna Mysoor, Banyan Tree Project's national program manager, about the Taking Root project. "If you look at the six stories even though they're all APIs living with HIV, they're actually quite different and have different levels of struggle and different levels of hope."

Fifty-two-year-old Melenie Eleneke, a transgender woman and Native Hawaiian, shared her story of living with HIV for the Taking Root project. A resident of California since 1986, Eleneke was diagnosed with HIV in 2001.

"I never really cared how I got infected because I had been engaged in high-risk behaviors," Eleneke said. "It could have been anyone. It could have been my intravenous drug use."

As a Native Hawaiian, Eleneke does not face the same language barriers in accessing HIV healthcare as some Asian Pacific Americans. But as a traditional Native Hawaiian healer Eleneke's spiritual beliefs sometimes clash with Western medicine.

"I don't allow a therapist to treat me in therapy completely by the Western methodology because I'm Native Hawaiian," she said.

The stigma and shame of HIV/AIDS, however, is shared among the entire Asian Pacific American community.

"Still in Hawaii it's very, very difficult to get people to disclose and to be open about their status because of shame," Eleneke said. "I'm hoping that I can help to be a part of that change."

There are over 4.9 million Asian Americans and 144,386 Native Hawaiians and Pacific Islanders in California, according to 2010 data from the U.S. Census Bureau. There are also about 45 different Asian American ethnic subgroups and over 100 languages and dialects spoken in the community, which makes helping individuals with HIV/AIDS challenging.

"With the Filipino community it's really complex because Philippines is the only Catholic country in Asia," said Filipino American Dennis Mallillin, a senior case manager with the A&PI Wellness Center. "So the sexual suppression or repression is so great that it translates to an internalized issue for Filipinos."

The lack of disaggregated statistical information on Asian Pacific Americans living with HIV/AIDS in California also does not give an accurate picture of the community's needs, healthcare workers say.

Edwin Mah, 62, was diagnosed with HIV in 1986 and knows firsthand the myths that exist about the virus in the Chinese American community. The Bay Area resident also lost his brother, Philip, to the disease in 1994.

"I have the battle scars of this disease," Mah says. "I have a sunken face because of the side effects of the medication and whatnot."

Having lived with HIV for over two decades Mah says he has noticed that the Chinese American community has difficulty speaking about sexuality and HIV/AIDS.

"I think the Asian community has a very easy way of dealing with denial," Mah said. "I have spoken to Chinese people who say, 'Well, in China we don't have that.' I said, 'What do you mean?' They say, 'Well, in China we don't have gay people.'"

To better understand the needs of specific Asian Pacific American subgroups, California Gov. Jerry Brown in 2011 signed into law AB1088. The bill was introduced by Assemblyman Mike Eng and requires state agencies to separate demographic data by subgroups.

Healthcare workers say they're cautiously optimistic that this bill will give them a clearer picture of the existing issues and disparities that exist for Asian Pacific American subgroups such as the Burmese community.

Heather, who speaks Thai and Burmese, says she sometimes has difficulty navigating the healthcare system without a translator. She now dreams of going to school and learning English. One day, she'd like to return to her homeland.

"If I have a chance I would like to go back to Burma. But currently I cannot, I'm not allowed to get into Burma," she said.

Editor's Note: This article was produced as a project for The California Endowment Health Journalism Fellowships, a program of USC’s Annenberg School for Communication & Journalism. It is the third article in a three-part series examining Asian Pacific Americans and HIV/AIDS healthcare in California.