June 25, 2004
API communities across the United States and its territories face "tremendous challenges" in preventing, testing for and treating HIV disease, as stated plainly by John Manzon-Santos, the executive director of the Asian and Pacific Islander Wellness Center, at an HPLS session. This clear and sharp message echoed warnings issued repeatedly by representatives of API organizations throughout the summit. They warned that without more culturally competent HIV prevention services, without disaggregated HIV reporting systems, without more resources to vigorously confront stigma in API communities, and without increased representation of APIs on HIV prevention community planning groups, the HIV epidemic in API communities is likely to worsen significantly.
There were four sessions at HPLS that focused specifically on APIs:
From these sessions, a picture about HIV infection and prevention in API communities emerged that suggests APIs are as much at risk for HIV as other ethnic groups in the United States. In fact, the API communities in the U.S. are in danger of a severe epidemic. What little data exist for API communities indicate that HIV is on the rise. According to the CDC and Prevention (CDC), there was a 25% increase in the number of AIDS cases among APIs from 1999 to 2002. Further epidemiological data show the rate of new AIDS cases among API women is doubling every year. Moreover, API HIV organizations maintain that the true number of HIV infections among APIs is much higher than reported. Often APIs are misclassified as another ethnic group, they say.
Obtaining funding for these prevention services, though, is the biggest challenge for API prevention organizations, according to a series of joint reports by the Asian and Pacific Islander Health Forum and the Asian and Pacific Islander Wellness Center (both of which receive CDC funds to conduct HIV prevention capacity building within API communities), which were distributed at HPLS. In one of these reports, entitled Resource Inventory of HIV Prevention Services in Southeast Asian American Communities, the agencies write that a common misperception exists among U.S. health care providers that APIs are not at high risk for HIV. They attribute this perception to the stereotype of APIs as "the model minority," which supposes that APIs have a higher economic status, higher education rates and a healthier population than other ethnic groups in America.
This stereotype distorts the reality of many API communities in the U.S., which have low education rates and high poverty rates, according to the collaborative report. This is particularly true for Southeast Asian communities. Studies presented in the Resource Inventory found that only 10% of Southeast Asian Americas have a college degree, while 67% of Laotians, 66% of Hmong and 47% of Cambodians in the U.S. live in poverty. "The below-average economical status of Southeast Asians indicates that this group is less likely to have access to health insurance," states the report. "These facts indicate the importance of targeting Southeast Asians in HIV prevention efforts as they are less likely to obtain these critical services elsewhere."
In addition to language barriers, representatives of API organizations at HPLS reported several cultural barriers APIs face in accessing HIV prevention services and testing. They described how many immigrant APIs (immigrant populations account for the majority of new infections among APIs) fear that by seeking out services for HIV they will lose their residency status. Additionally, they told how APIs tend to resist openness about sexuality and sexual behavior. This silence keeps many APIs from taking control of their sexual health and testing for HIV, they said.
The lack of openness about sexual diversity contributes to high stigma of those infected with HIV, said Presenter Lawrence Ozoa of the Asian and Pacific Islander Wellness Center. At the HPLS session called National API MSM Knowledge, Attitudes, Beliefs and Behaviors Survey, Mr. Ozoa led workshop participants through the results of a recent survey of API men who have sex with men (MSM). Notably, 43% of the survey's respondents refused to disclose their HIV status. Ozoa suggested that this lack of disclosure represented a fear on the part the survey's participants of being identified. He explained how the stigma associated with being HIV positive not only brings shame on the individual, but also on the whole family. Workshop participants agreed with this assessment. "Everything is about the family, not the individual," said one participant.
Last year at a meeting in Guam, representatives of the Pacific Island jurisdictions told the CDC's Dr. Robert Janssen that the guidelines for community planning groups were misfit for the Pacific Islands. In fact, they placed an undue burden on local health department officials who strived -- with mounting frustration -- to follow the model each year so that their jurisdiction would continue to receive funds for HIV prevention activities.
The HPLS roundtable began with a recap of the Guam discussions. Members of the Pacific Island health departments reported how the recruitment and retention of API volunteers representing high risk populations was nearly impossible. Because homophobia remains pervasive on the islands, some men "cannot serve [openly] on the API," said Louisa Helgenberger, the HIV/AIDS Prevention Program Manager for the Federation of Micronesia. Similarly, HIV stigma from the larger culture has prevented individuals living with HIV from serving on CPGs.
These difficulties make recruitment and retention of API members a full time task for Pacific Island health department officials. This is a particularly large burden, given the health departments on the Pacific Islands are small compared to most state health departments. Consequently, health department officials on the Pacific Islands have to "wear many hats," as one official expressed it at the roundtable.
Following the meeting in Guam, the CDC issued program announcement 04069. This program announcement was in response to the constant struggle on the part of the Pacific Island jurisdictions to conform to the CDC guidelines. It provides the Pacific Islands with the opportunity to create a new model for their CPGs that is culturally relevant.
CDC Project Officer Victoria Rayle commented that the CDC finally understood that the "one size fits all" model for CPGs does not work for the Pacific Island jurisdictions. She acknowledged that the CDC was slow to change the guidelines for the Pacific Islands, but she expressed her relief that a more culturally competent model could now be developed. Responding to a question from a health department official regarding the guidelines for the new model(s) to be developed, she emphasized that the new model needed to be a "community involvement process for planning and program implementation," as mandated by Congress. However, beyond that principle guideline, she told the Pacific Island jurisdictions that they had a "pretty open canvas to paint." She emphasized that the new model would be "driven by the Pacific."
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