APIS LIVING WITH HIV: Suffering, Stigma and Survival

SURVIVORS — HIV-positive APIs Mark Agtane (L) and “Miss E.” photos by Shiina Morimoto/Nichi Bei Weekly

In the Tenderloin district of San Francisco, “Miss E” talks about being an HIV-positive Asian American.

“I was at death’s door when I was diagnosed. Of course it’s devastating to find out you have AIDS,” she said.

Miss E has the kind of remarkable life you could base a movie on. Her Japanese mother died when she was eight years old, and she was estranged from her Filipino father. “I don’t think my parents ever wanted me. So my grandparents raised me,” she said.

Born male, she started to develop her female gender identity at the age of 15. She went on to become a sex worker in the Tenderloin for 22 years. In 2000, she discovered she was HIV-positive.

“The nurses say it’s a miracle I’m even alive,” she said.

Despite unimaginable challenges, Miss E is happy. “I told my fiancé I was HIV-positive. He said he wanted to marry me anyway. That’s love,” she said.

Many diseases, including HIV and AIDS, disproportionately affect Asian Pacific Islanders (APIs) in the United States. According to the Centers for Disease Control (CDC) and Prevention, HIV, which stands for human immunodeficiency virus, is the “virus that causes AIDS.”

CNN’s Dr. Sanjay Gupta stated that between 1999-2009 HIV infection rates amongst APIs in the U.S. rose 44 percent. According to the National Institute of Allergy and Infectious Diseases, “the estimated number of AIDS cases in the Asian and Pacific Islander population grew from 3,574 in 2002 to 4,526 in 2006. APIs were the only U.S. ethnic or racial group for which the annual number of reported AIDS deaths rose during that period.”

Eighty-seven percent of APIs who are infected with HIV are men who have sex with men, according to a CDC study. From 2001 to 2006, API men who have sex with men had the largest proportionate increase (255.6 percent) in diagnosis rates compared to other ethnic groups.

Also according to CDC studies, 66 percent of all APIs have never been tested for HIV. AIDS activists say that the numbers of HIV and AIDS cases among APIs may be higher due to underreporting and misclassification.

An Association of Asian Pacific Community Health Organizations (AAPCHO) report shows that 19.4 percent of API adults, compared to 12.9 percent of Caucasians, report lack of access to regular health care.

On top of that, APIs are more likely to be at an advanced stage of AIDS and have other opportunistic infections such as cancer or pneumonia at the time of diagnosis.

Stigma and Shame

The increasing infection rate is not the only problem facing APIs.

According to Ed Tepporn, HIV program director of the San Francisco-based Asian and Pacific Islander American Health Forum (APIAHF), stigma in Asian communities — with respect to the disease — is higher than in others. In Asian communities, an individual often has extremely strong ties to the family; if a family member has HIV, the entire family feels disgraced.

“As a Filipino Catholic, I had feelings of shame and guilt,” said Mark Agtane, who has been living with HIV for 15 years. “The cultural stigma is so hard to shake. Discrimination and stigma disable HIV prevention, testing and treatment.”

“California has been a leader so far in that there are a number of community-based organizations that provide culturally and linguistically compatible services for A(PI)s.” However, “cultural stigma continues to be a huge problem in A(PI) communities that needs to be further addressed,” Tepporn added.

Miss E has been receiving care and culturally specific support from the Asian and Pacific Islander Wellness Center (A&PI Wellness Center) in San Francisco since 2001. “I’m very happy with their services. My caseworker does everything. It’s like a community, a family — a great support.”

Founded in 1987, the organization promotes advocacy, collaboration, and services to improve the health of Asian Americans, while considering the special linguistic, community, and cultural needs of specific ethnic groups.

According to a 2007 New York State minority health surveillance report, nearly half of APIs said their health department does not provide culturally and linguistically competent HIV prevention and care services targeted to API communities.

Carlos Bermudez, director of health education at A&PI Wellness Center, stresses the importance of fostering programs that create visibility and acceptance throughout the API communities. “We must decrease stigma and increase acceptance of culturally taboo topics related to sex and sexuality, illness, and death in A(PI) communities. Increasing acceptance of HIV creates the structural environment for A(PI)s to access effective HIV prevention services,” Bermudez said.

According to the Oakland-based AAPCHO, “culturally focused community-based organizations are indispensable in any health system.”

And no one can attest to this more than the clients themselves. Agtane has been a client of A&PI Wellness Center since 1996. “My partner got very sick. It was in the emergency room that the doctor told me he was dying of AIDS.”

Agtane’s partner had known he was HIV-positive for a number of years but never told him. “I walked out of the hospital when I found out,” he said. “He was my partner of nine years. I was shocked… I knew I had to be HIV-positive because he was.”

Agtane’s diagnosis brought on a 13-year depression. “I just sat in a room, waiting to die. At one point I was homeless and lived in my car. Sometimes I had nothing to eat for days.”

Agtane finally got the support he needed. Today, he describes himself as an AIDS activist. “I’m on the San Francisco Care Council, appointed by the city. I’m a role model for others who have not come to terms with their illness. I’m a survivor,” he added.

Despite her misfortunes, Miss E remains upbeat as well. “The very little that I have left, I am grateful for. It’s been a hard process, but I’m happy.

California State Budget Cuts

Nonetheless, the recent state budget cuts have and will continue to critically impact community-based organizations like A&PI Wellness Center and those receiving their services.

In February 2009 Gov. Arnold Schwarzenegger signed a budget for the fiscal year with a proposed $15 billion in cuts to health and other vital services.

“The governor’s $80.1 million in cuts to the State Office of AIDS will be devastating,” said AIDS activist Jane Huynh, an HIV-positive Vietnamese American from Los Angeles.

According to the San Francisco AIDS Foundation, an estimated 160,000 people in California alone have HIV. Actual numbers are likely higher. Yet in recent years California has been able to keep new HIV infections under control with outstanding prevention programs, with San Francisco even reporting slight decreases in the number of people infected.

According to Debra Holtz, media relations manager at the San Francisco AIDS Foundation, the budget cuts would effectively eliminate state government funding for HIV testing, prevention, education efforts, and other support services. “The cuts to prevention will be crippling,” she said.

Kevin Farrell, former chief of HIV education and prevention services at the State Office of AIDS said, “If California cuts HIV testing and screening as proposed, new infections will rise.”

David Stupplebeen, media and communications coordinator at A&PI Wellness Center, said that “among other cuts, $25.5 million has been eliminated from the AIDS Drug Assistance Program, which provides medications to people who do not have adequate insurance coverage. For this fiscal year, the reduction will be backfilled with the California State Special Fund, so there are no significant program changes anticipated just yet. But everyone is very worried.”

APIs Living with HIV and AIDS

According to the California Progress Report, “the proposed cuts would ‘decimate’ an evolved network of agencies and programs which prevent and contain the spread of the disease, especially among minority communities.’”

“My medicines cost about $7,000 a month. When I found out about the cuts to the AIDS Drug Assistance Program, I was freaking out because I’m on my last batch of meds,” said Miss E. “When they run out, I don’t know what I will do.”

Bermudez, of the A&PI Wellness Center, said, “the budget cuts will essentially wipe out all culturally competent HIV prevention and support services for Asians and Pacific Islanders in California.” He continued, “With HIV stigma in A(PI) communities, in addition to the lack of culturally and linguistically competent HIV testing and treatment services, the budget cuts will be dire.”

“They say that up to half of A(PI)s have never been tested for HIV. By reducing funding to HIV testing sites, many A(PI)s will go without testing, as it will not be available in their language,” said Huynh.

Tepporn, of APIAHF, worries about whether community-based organizations serving APIs will even be sustainable in the near future. “So many organizations have had to cut staff, space, and benefits so that they don’t have to cut services to clients. There will be a multifaceted impact on these organizations,” he said.

“A&PI Wellness Center is the only A(PI)-focused HIV prevention-services provider in San Francisco. The comprehensive model of HIV prevention that San Francisco is so well-known for will be damaged beyond repair,” Bermudez said.

Activist Huynh said, “We are decades into the global AIDS epidemic, yet stigma, discrimination, and ignorance still stand strong. Thus it is crucial to maintain community based health organizations to prevent, teach, and heal those suffering from this harrowing disease.”

The California state budget cuts therefore present a major obstacle in the long-standing fight against HIV and AIDS.

As Bermudez fears, “we will be moving backwards with respect to the HIV and AIDS epidemic.”