Racial disparities in HIV diagnoses and treatment have existed since the beginning of the epidemic in the early 1980s. But Asian Americans are often left out of the dialogue despite being the fastest-growing demographic in the U.S.
Between 2014 and 2018, Asian Americans made up 6% of the American population and accounted for 2% of new HIV diagnoses. Gay and bisexual Asian men were the most affected of the new cases. For Asian women, 95% of new diagnoses were transmitted through heterosexual contact, according to the Center for Disease Control (CDC). But even though the overall number of HIV cases for Asian Americans is relatively low, researchers say HIV diagnoses among Asian American and Pacific Islanders (AAPI) have increased along with the overall population. So, why aren’t more public health agencies doing something about it?
Challenges with outreach
The CDC estimates that only 80% of Asian Americans living with HIV have been diagnosed—the lowest of any ethnicity—highlighting the need for more targeted HIV outreach, treatment and care. However, there are multiple factors that can prevent necessary outreach from happening. Asian Americans are more likely to be diagnosed later since they often wait to receive help. Late intervention can have major consequences for people with HIV, causing infections or serious damage to their immune system. Cultural beliefs and stigmas within the community have proven to be a contributing factor to late intervention as well, and leads to a lag in providing education and testing.
Vincent Crisotomo, San Francisco AIDS Foundation Director of Aging Services, believes the media coverage of HIV in the 90s didn’t help matters.
“There are some people who believe that if you’re the ‘model minority,’ it’s not supposed to happen to you,” said Crisostomo. “Especially with all the coverage and press that HIV got in the ‘90s, it was very stigmatized.”
Even public health agencies dedicated to serving people with HIV often have limited resources that are specifically allotted for the Asian community. HIV outreach involves intensive work and goes far beyond passing out condoms and informational pamphlets. Many public health agencies working in the HIV space conduct community research, compile data, do HIV trend monitoring, provide diagnostic care and medical care, offer support groups, transportation to health facilities, syringe services, sexual health screenings, and health education. When certain communities are overlooked in this area it can prevent people from getting screened for HIV, receiving proper care, and taking additional measures to prevent the disease from spreading.
This year Asian CAAAV conducted a survey consisting of 48 organizations on the HIV front lines across the country. Participants in the survey were asked whether they have HIV programs or services specifically targeting the Asian American community. Sixty-four percent of the participants answered no. Language was listed as a major barrier for HIV outreach, followed by stigma within Asian communities about HIV testing or homosexuality, followed by trouble engaging with the population due to lack of WiFi or other technical problems. What was working when reaching Asian American communities, the organizations said, was peer youth programs to provide education, language interpretation services, sliding fee scale programs, culturally tailored intervention services, and consistent webinars.
‘The numbers just don’t warrant that kind of support’
There are only a handful of health agencies that specifically target Asian Americans for HIV outreach, and that number is dwindling due to decreased funding and organizations needing to adapt to the changing times in order to stay afloat. Due to limited funding, over time, some agencies have changed their focus from HIV to sexual health, and other organizations have had to change their mission altogether.
Crisostomo has been able to secure some funding for programs that serve Asian Pacific Islanders (APIs) with HIV, but he acknowledges it’s not easy for every agency to come up with the resources. He says that even with the targeted support the API group he works with at SFAF says they often feel invisible because their cases aren’t significant enough to be mentioned.
“Here in San Francisco we at least have some political will because we have a good representation of AAPI communities,” Crisotomo said. “We have politicians who lend their voices to the cause and they’re supportive. So I think it’s been a little bit easier here, but at the same time, it’s hard to sustain because people tell you that the numbers just don’t warrant that kind of support. Probably years from now, people will wonder, ‘What happened? Why are cases in the API community going up?’ It’s because you stopped providing services.”
Even for regions with a higher Asian population, it can still be a hassle to secure funding due to the low number of HIV cases. California has more Asian residents than any other state in the U.S., accounting for 16% of the state’s population. According to the most recent census, more than 35% of people living in San Francisco are of Asian descent, and 20% are Chinese. The city also has the highest incidents of AIDS in the U.S. Although APIs comprise more than one-third of the population in San Francisco, few public health agencies have staff members who speak Mandarin, Tagalog, or other Asian languages. Language barriers and few translation options can prevent public health agencies from reaching different subgroups of the population.
The San Francisco Community Health Center (formerly the API Wellness Center) is the oldest HIV/AIDS nonprofit in the U.S. targeting API communities. In 2009, the organization started the Banyan Tree Project (BTP) to eliminate the stigma of HIV in the Asian American community. BTP typically leads the annual National Asian and Pacific Islander HIV/AIDS Awareness Day on May 19. The program is currently inactive due to some restructuring and board decisions to refocus, but there are hopes that portions of it will eventually be resurrected.
Nicky Calma, director of programs and community engagement at the San Francisco Community Health Center, has been working to do outreach to the API community for nearly three decades. She says budgets meant to provide HIV support for API communities are “always shrinking.”
“There was a time when all gay men were just considered gay men, and that’s where the most of the funding went,” Calma said. “They didn’t care if they were African American, Latino, or API. People were like, ‘No. You can’t do that because the needs are so different for each population, and culture-wise, it’s just not the same.’ A lot of people advocated against that.”
Addressing the different needs for different subgroups for Asian populations has been a challenge. Over Calma’s years in the HIV space, she said agencies have had to adapt in order to approach hard-to-reach Asian populations. San Francisco organizers used to try to visit places where many APIs congregated, but Calma says the pandemic made the process much more difficult.
“API MSM [men who have sex with men] are a very hard-to-reach population,” Calma said. “I mean, they’re everywhere, but to mobilize them and to get them in one place is impossible. Even the bars and clubs that used to be kind of API focused—they’re no longer in existence. They all closed down. The resources are so sparse right now. We’re asking ourselves, ‘Where do API’s go? How do we organize? How do we mobilize our population and our community?’”
Asian HIV outreach in the South
Different parts of the country have their own struggles with targeted HIV outreach for Asian Americans. In the South and Midwest the challenge of obtaining enough resources to address the community’s unique needs can be great. Doing outreach can be especially challenging in the South where Asian Americans make up a small portion of the population. With the Asian population number rising rapidly in the region, the need to reach out to the community is becoming increasingly necessary.
“Being in the southern belt, we are already part of a fairly conservative region,” said Alnory Gutlay, program director for the Center for Pan Asian Community Services in Atlanta. The center is one of the handful of organizations across the country that does targeted HIV outreach toward Asian Americans. “There is fear of being shunned from the community if you were to test positive for HIV. Add with the lack of available culturally appropriate services to address that, the fear continues.”
Though language barriers present a challenge for HIV outreach for Asian populations across the country, it’s an even bigger struggle in the South. Since much of the Asian population in America is foreign born, having multiple staff members speaking multiple languages is crucial.
“The need for language services implies that an agency cannot just readily serve the [Asian American] community without having multiple bilingual staff or an easily accessible language-line available,” Gutlay said. “For example, providing HIV outreach testing in the Asian American community does not mean having one Asian staff [member] who speaks one Asian language will be able to cater to all the other Asian languages that are spoken in the service area.”
Grants dictate which populations receive HIV funding, and since Asian Americans aren’t placed in the high-risk priority group, they’re often lumped into the “other” category without a detailed breakdown of ethnic groups. This contributes to the lack of HIV data for Asian populations.
“When I first started getting involved with HIV outreach I remember providing condom education for a group [of] high school refugee youth,” Gutlay said. “One of the students asked me, ‘Why is it important to learn about HIV? We didn’t have HIV before coming to America.’ Six years later, I still think back to that time. That type of belief is being reaffirmed when agencies say Asian American’s are not high risk.”
Moving forward, some HIV-focused agencies are trying to band together to ensure API communities aren’t overlooked or forgotten. To compile more data, some agencies are actively creating a national Asian HIV network to help organizations connect, create an API HIV database, share resources, collaborate, and offer support.