Sometimes, I wish for a little more silence (i.e., peace and quiet) in my life. We’re so connected to our social networks, to work, and everything else in our lives that finding some moments when we can escape the intrusions of modern life, from the chime signaling the arrival of yet another IM, email, or breaking news report, to the ringing of phones, and the honking of traffic. Even though we might want more of it at times, silence can be the opposite of what we need. It definitely works that way when people stay silent about HIV. Our voices can be incredibly effective in fighting the fears, misinformation, and stigma that continue to exist.
Our lives might be a little less quiet, and we might be hearing voices (real ones) if the Banyan Tree Project has its way. The campaign supports National Asian & Pacific Islander HIV/AIDS Awareness Day, which takes place each year on May 19th. The campaign’s key message is “Saving Face Can’t Make You Safe.” Empowering people to use their voices is at the heart of the campaign, which is working to help end HIV stigma in the Asian & Pacific Islander (API) community.
Stigma continues to be a real and pervasive problem in all our communities, and it can hold some people back from talking about testing, prevention, and life with HIV. We hesitate. We don’t say what’s really on our minds because we don’t want to rock the boat. We hold ourselves back, giving power to our own internalized stigma. As a result, we miss the opportunity to change the narrative and create new social norms that can make it easier to talk about these important issues in the future. This gives power to the people who would rather avoid these discussions by labeling some topics as “private,” “inappropriate,” “embarrassing,” or “controversial.”
This is troubling, particularly for APIs, who are believed to have the highest rates of undiagnosed HIV infection among any racial/ethnic group. CDC estimates that 15% of people living with HIV in the U.S. have not been diagnosed. That percentage is estimated to be 22% for Asian Americans, and nearly 20% for Native Hawaiians and Other Pacific Islanders (NHOPI). If people don't know they have HIV, they can't get the treatment they need to protect their own health and to lower their risk of transmitting the virus.
The good news is that APIs who know they have HIV have the highest rates of any racial/ethnic population when it comes to linkage to medical care and treatment within one month of diagnosis (80% for Asian Americans and 84% for NHOPI). Asian Americans also have the highest rate of viral suppression among those in treatment (60%).
We should celebrate this news, while still acknowledging that APIs and other communities still have some distance to go in order to reach our nation’s goal for knowledge of HIV status. That goal is that at least 90% of people living with HIV will know their status. Reaching this goal is so important that it is the first indicator used to measure progress for the National HIV/AIDS Strategy, a leading health indicator for Healthy People 2020, and the first “90” in the United Nations’ 90-90-90 goals.
Viral Hepatitis in the API Community
We can’t keep on addressing just one issue at a time when it comes to the health of communities. There is an urgent need to integrate information about hepatitis B virus (HBV) in HIV programs (and others) serving the API community.
We also still have work to do to support the API community’s own efforts to address the disproportionate impact of viral hepatitis, particularly HBV, on its members. In the U.S., APIs make up only about 6% of the population, but they account for about half of Americans living with HBV.
CDC estimates that, left untreated, approximately 15% to 25% of those with chronic HBV infection develop serious liver disease, including cirrhosis, liver damage, and even liver cancer. Primarily because of HBV infection, AAPIs are 8-13 times more likely to develop liver cancer than other groups, and the liver cancer death rate is 60% higher for APIs than for Caucasians.
Both HBV and hepatitis C infection (HCV) accelerate the progress of liver disease for people living with HIV. The HHS Panel on Antiretroviral Guidelines for Adults and Adolescents recommends [PDF, 3.29 MB] that all people diagnosed with HIV should be tested for HBV and HCV.
Today, medication can control HIV and HBV infections, but they cannot currently be cured. There is also a highly effective HBV vaccine that can prevent infection. HBV vaccination is recommended for people who are at risk for HIV, or who are already living with HIV but have tested negative for HBV. There is no vaccine available for HCV (or for HIV), but there are treatments for HCV that can cure more than 90% of people who have it.
Looking to the Future
As a community, APIs have demonstrated strengths and abilities that support getting HIV medical care and starting treatment soon after being diagnosed with HIV. We need to explore the personal and community assets that make this possible to determine if there are ways we can better serve this community and approaches we can use in other communities. We also have to keep in mind that, although groups as a whole may do well on something, that the people who are part of that community are not all the same and may need additional support.
We also need to continue taking on the effects of stigma, shame, and discrimination among Asian Americans and NHOPI people. We need to take on the silence and barriers that contribute to API persons’ risk of undiagnosed HIV infection, and encourage testing for both viral hepatitis and HIV.
We need to pay particular attention to boosting our outreach efforts to gay and bisexual API men—promoting the benefits of PrEP (pre-exposure prophylaxis) to those who are HIV-negative and the importance of treatment and viral suppression to those who are living with HIV.
Most important, we need to seize the opportunity of a day with two infectious disease observances to support the API community. This is our chance to talk openly about the issues of HIV and viral hepatitis, and to promote a vision of a future without HIV or AIDS.
There are many organizations contributing to the response to HIV and viral hepatitis in the API community, including: the API Awareness Day leader, the Banyan Tree Project; APICHA Community Health Center; API Wellness; and AAPCHO (Association of Asian Pacific Community Health Organizations). They offer information about HIV and other health disparities in the API community, API Awareness Day activities and events, and combating HIV-related stigma.