05/21/2012 02:52 pm ET Updated Sep 17, 2014

Twenty Years Later and Still Fighting Invisibility

I recall stepping into a large auditorium. It was the first time that I had entered such a multi-racial gathering around the issue of AIDS and HIV. The opportunity to address such an audience was both scary and electrifying. I knew the challenges I had faced in trying to serve Asian-American clients in the early days of the epidemic. I can still hear their stories of feeling invisible, ashamed, and confused. But at that moment, it was time to connect that set of experiences with other communities and build a movement for prevention, care, mutual support, and treatment.

That was November 1990. It was a time when many HIV- and AIDS-serving and advocacy organizations in ethnic minority communities were just forming. Organizations such as the Asian & Pacific Islander (API) Wellness Center -- now a community institution and founder of National Asian & Pacific Islander HIV/AIDS Awareness Day -- were just coming together. At the same time, the Gay API community was organizing, raising awareness amongst APIs generally, and trying to counter their invisibility in the mainstream arena.

And yet -- more than 20 years later -- Asian Americans (AA), Native Hawaiians, and Pacific Islanders (NHPI) still remain largely invisible in the HIV/AIDS context. Data and policy reports frequently fail to highlight the impact of HIV/AIDS on AA and NHPI populations. The misconception -- both among AAs and NHPIs and the general public -- that AAs and NHPIs are not impacted by the disease remains. It's not common knowledge that the Centers for Disease Control and Prevention (CDC) has found that AAs and NHPIs were the only racial/ethnic groups with a statistically significant increase in HIV diagnosis rates between 2001 and 2008. And even fewer are aware that initial analysis of CDC data shows that if AA andNHPI HIV/AIDS trends remain constant, AA and NHPI rates will actually exceed those of Latinos in five years and African Americans in 10 years.

In the past 20 years, AA and NHPI advocates have developed prevention and care services that are sensitive to the diverse cultures andlanguages of AAs and NHPIs living with and at-risk for HIV/AIDS. Unfortunately, this knowledge base remains difficult to tap as AA and NHPI focused HIV prevention and care programs compete for scarce funding that is often allocated to larger racial/ethnic populations. In the mid-1990s, there were as many as 55 AA- and NHPI-focused programs; yet today, less than 20 remain.

Given this context, it's not surprising that AAs and NHPIs have some of the lowest rates of HIV testing of all racial/ethnic groups. More than two-thirds of Asians and more than half of NHPIs have never been tested. The lack of testing also contributes to the fact that that one out of three AAs and NHPIs living with HIV/AIDS are unaware that they have it.

While our communities experience a number of barriers to testing and health care generally, AA and NHPI men and women face a number of distinct challenges specific to HIV/AIDS. HIV-related stigma makes it difficult for AA and NHPI men to openly discuss their sexual behaviors with health professionals and partners. Strong cultural barriers, including homophobia, presumed heterosexuality, and taboos over sexual orientation and gender identity, make it hard for AAs and NHPIs -- particularly those who are transgender -- to get tested, access care, and maintain family and community support systems.

Because AA and NHPI women primarily become infected through heterosexual contact, their risk of infection frequently depends on their male partner's behaviors and knowledge about those behaviors. Cultural taboos about sexuality and promiscuity also make it hard to discuss safe sex and get tested, which may partially explain why Asian-American and Pacific Islander women are less likely to access gynecological services and more likely to be diagnosed with HIV at later stages. In addition, the intersection of violence and battering adds another layer of potential difficulty for these women.

Recent federal reforms and investments are helping. The CDC has taken steps to help improve our understanding of the impact of HIV/AIDS among AAs and NHPIs. The Affordable Care Act (ACA) will expand access to health care and treatment options by making insurance more affordable, expanding eligibility for Medicaid and ending unfair insurance company practices. In addition, congressional leaders are working on solutions like the recently introduced Health Equity and Accountability Act that is tailored to eliminating HIV infection and disparities in minorities. And lastly, the White House's National HIV/AIDS Strategy serves as a national agenda for combating the epidemic.

This May 19, regardless of our racial/ethnic group or HIV status, we should all join AA and NHPI communities around the nation in observing National Asian and Pacific Islander HIV/AIDS Awareness Day. Together we can work within our communities and with policy makers to push for and implement initiatives that raise awareness, combat invisibility in marginalized communities, counter misconceptions and promote our nation's health.