Seventeen years ago, Henry Ocampo did not think he would make it past his 25th birthday. A fresh graduate from the University of California, Davis, the young Filipino American was the pride and joy of his family.
None of them knew his status.
As an HIV prevention worker, Ocampo knew the risks. Although his then-partner was HIV-positive, they’d played it safe, getting tested routinely.
He wasn’t worried.
“Your test came back positive,” Ocampo, who was 23 at the time, remembered hearing after one such test. “You have HIV.” He heard little else of what was said during that meeting almost 20 years ago.
Ocampo shared his experience in the form of a digital story at a forum hosted by the Asian and Pacific Islander Wellness Center. Under the title “Taking Root: Our Stories, Our Community,” the May 3 event aimed at increasing awareness of HIV/AIDS prevention and combating lingering stigmas around the disease among members of the Asian and Pacific Islander community through personal stories, poetry and dance.
May 19 commemorates National API HIV/AIDS Awareness Day.
The event drew some 70 individuals, including San Francisco Health Commissioner Cecilia Chung and members of the Asian American Recovery Services (AARS), Asian Pacific Islander American Health Forum (APIAHF), Gay Asian Pacific Alliance (GAPA), the Oakland Asian Cultural Center (OACC) and One Love Oceania (OLO).
The Stigma of AIDS
Like most college graduates, Ocampo had big dreams, including going to graduate school, buying a house and traveling the world. After his diagnosis in 1995 — one year before the introduction of the Highly Active Antiretroviral Therapy (HAART), which allowed patients to more effectively manage their illnesses — none of that seemed to matter.
“How could I tell my parents?” Ocampo, who is the youngest of four siblings, said that was the one question that gnawed at him most, alongside concerns about the shame his illness would bring to the larger family.
Although APIs account for a third of San Francisco’s population, in 2010 they only received 11.8 percent of all HIV tests given in San Francisco, according to the San Francisco Department of Public Health. The figure is far below that for Hispanics and African Americans.
The percentage of new HIV infections annually among APIs, however, has been higher than any other racial and ethnic group in the city since 2001. Today there are over 800 APIs living in San Francisco with HIV/AIDS. Nationally, more than 60 percent of Asians and Pacific Islanders have never been tested for HIV, according to a survey done by the National Center for Health Statistics.
“We’re all living with HIV whether we have the virus or not,” said San Francisco Health Commissioner Cecilia Chung. “We can choose to perpetuate shame with our silence and judgment or we can choose to save lives with our love and compassion.”
Ocampo told the audience that soon after he was diagnosed, “one of the most difficult things” was figuring out how to live with this disease.
“There was,” he said, “a lot of internalized stigma and shame.” Much of that stemmed from concerns about the family, and how his status would reflect on them.
Stephanie Goss is communications manager with the API Wellness Center in San Francisco. She said that sense of shame is what keeps a number of API community members from getting tested, which in turn leads care providers to assume, wrongly, that HIV testing among Asians and Pacific Islanders is less of a priority.
“Health care agencies need to be culturally competent so they can understand the cultural issues that clients may be facing,” said Goss.
Started in 1987, the API Wellness Center serves some 3,000 clients through its HIV Primary Care Clinic, which offers a wide variety of free services including medications, blood tests, immunizations, case management, support groups and training programs. Priority is given to those without insurance — including undocumented immigrants — or those with insurance that does not fully cover the care needed.
On his 25th birthday Ocampo decided to go parachuting. If the parachute failed, he said, at least he would not have died from HIV. Each day afterward was like icing on the cake. “Now I’m seeing strands of gray hair,” Ocampo said.
It took him more than a year to disclose his HIV status to his family. When he finally told his parents, they cried at first, he said. Then they pulled themselves together, before asking the question individuals like Ocampo dream of hearing. “What can we do to support you?”