STIGMA
Download our fact sheet on HIV-related stigma in the A&PI community
WHAT IS HIV-RELATED STIGMA?
HIV-related stigma refers to the severe individual, family and community shame or disgrace associated with HIV. People living with HIV are blamed for their condition and are punished—by exclusion, isolation, prejudice and discrimination—for contracting the disease. They are often vilified and reduced to stereotypes—drug users, gay men, sex workers—with little regard for their individual experience or situation. In the Asian & Pacific Islander (A&PI) community, HIV-related stigma is so powerful that people avoid talking about sex or HIV entirely. This silence feeds the fear and misconceptions about HIV transmission. For A&PIs, an HIV-positive test result can shame and disgrace the individual, as well as the family and community.
HOW DOES STIGMA CONTRIBUTE TO THE RISE IN HIV INFECTION RATES?
- Health providers believe A&PIs are "low risk" for HIV infection. They consider HIV testing for A&PIs unnecessary and do not offer HIV tests.
- A&PIs are afraid to get tested for fear of rejection by family and community. Getting tested might expose a secret, such as sexuality or drug use, both heavily stigmatized in the A&PI community.
- A&PIs don't believe HIV is their issue. HIV is seen as "someone else's problem."
- HIV-related stigma increases HIV risk. The intense fear and shame associated with HIV can lead to depression and isolation, often causing people to engage in unsafe behaviors such as unprotected sex or drug use.
Stigma in the field: DR. TRI DO'S STORY
A 27 year old Filipino male patient came into the emergency room, complaining about shortness of breath. This symptom was caused by lung fluid, but when we reviewed his x-ray, we found a suspicious lump. Tests showed he had non-Hodgkin's lymphoma and his HIV antibody test—his first—was positive.
He couldn't afford insurance and had never seen a doctor about this problem before coming to the ER. In the past, he had seen doctors who were homophobic about his "unhealthy gay lifestyle." He was scared and avoided getting tested because he didn't want to find out he was HIV-positive.
He was admitted to the AIDS team at San Francisco General Hospital under my care for further studies and treatment. I assured him he was in a gay-friendly environment, but his fear and shame of being "found out"—of people discovering he was gay or HIV-positive—was so severe that he would not allow staff to tell his family about his sexuality or HIV status. We had to tell his family he had a normal pneumonia.
Eventually his breathing status improved and he could undergo cancer treatment. He became well enough to leave the hospital. I worry about him. Not being able to disclose important matters like this to his family will likely worsen his health. He doesn't have a support system in place to help him stay on his HIV medication schedule. He doesn't have anyone monitoring his status in case his condition worsens. And, we know that psychological stress hastens HIV progression.
HOW DOES HIV-RELATED STIGMA AFFECT THE COMMUNITY?
HIV-related stigma permeates every level of society, from the individual and family to the community and health care providers.
- Employment: Co-workers and employers can socially isolate people living with HIV/AIDS, and may even terminate employment when they learn someone is HIV-positive due to fear.
- Health Care Settings: Doctors or health professionals may discourage HIV testing because they believe their patients are not at risk for HIV (such as A&PI women).
- Community: Attitudes about HIV/AIDS can restrict where people living with HIV live, go to school, or get treatment. People may think they can get HIV by sharing eating utensils or by casual contact like kissing or hugging.
- Family: Family members often provide support for those who are sick. However, families will sometimes reject or disown relatives who are living with HIV or seek to hide the truth about their HIV status.
WHAT CHALLENGES FACE THE A&PI COMMUNITY?
While we know a lot about HIV and A&PIs, there is a lot we don't know. Federal, state and local level data often do not accurately reflect how many A&PIs are living with HIV. For instance, states with large A&PI populations, such as California and Hawai'i, are not included in current CDC HIV/AIDS data sets. Some localities do not disaggregate data, lumping A&PIs under "other." Without a reliable way of collecting A&PI demographic and testing data across the nation, it's impossible to know which communities and regions are most affected and most in need.
- A&PIs speak over 100 different languages and belong to 40 different ethnic groups, yet HIV prevention information is available mostly in English and Spanish. This, coupled with a lack of culturally and linguistically competent health providers, makes it difficult to communicate HIV risk to many A&PIs.
- 1 in 3 A&PIs living with HIV don't know it. Many A&PIs don't know they are at-risk. This is reinforced through family, community and health care provider attitudes.
Do you want to find out more about HIV/AIDS related stigma?
You can read stories from HIV-positive Asians & Pacific Islanders in our book, "You Can Change the Story." Visit our links page, where you can find more information on stigma and other topics.
Here are some other links to articles online about HIV-related stigma:
- UC Davis Psychology, Dr. Gregory Herek: Contains easy to understand information about HIV/AIDS Stigma, as well as discussing other stigmatizing attitudes.
- Link & Phelan's "Conceptualizing Stigma": Leading peer-reviewed article on stigma. (This is a pay-per-download, from the Annual Review of Sociology.)
- Avert.org: Informative page on stigma.
- TheBody.com: "What is Stigma" page contains links to articles and stories about HIV-related stigma and discrimination.
News and Events
For 2011, we developed a series of 3 posters to capture the diversity in our community. Download all 3 posters. Download the Pacific Islander poster. Download the East Asian poster. Download the South Asian poster.
