Changing the narrative: Caring for Asian American and Pacific Islander patients with HIV

Wednesday, May 19, is National Asian & Pacific Islander HIV/AIDS Awareness Day. Founded by the Banyan Tree Project, the day serves to raise awareness of the impacts of HIV stigma on Asian and Pacific Islander people. Here, Los Angeles-based physician Dr. Jen Chang discusses the importance of work that provides the support of a community to Asian Americans and Pacific Islanders living with HIV.

I’m a physician at a clinic in Los Angeles that cares for thousands of people living with HIV. As a physician mentor, teaching medical students and residents is one of the real joys of the job, and I like to start the rotation asking everyone to read and absorb the following:

“Not only are we born into complex communal narratives, we also experience, understand and order our lives as stories that we are living out. Whatever human rationality consists in, it is certainly tied up with narrative structure and the quest for narrative unity.”

-Mark Johnson, The Body in the Mind, 1987

When I think about my patients who identify as Asian-American and Pacific Islanders, who are living with HIV (approximately 5% of my clinic), I remember this quote because of the extraordinary lack of a broader cultural “narrative” that these patients can identify with. Greater media representation for Asian Americans in general is still in its nascent stages, with series like “Bling Empire” on Netflix, “House of Ho” on HBO Max, or the 2018 film “Crazy Rich Asians,” – but can my patients who identify as Asian American and Pacific Islander and living with HIV relate to this (or really, can anyone)? And from another angle, the list of stellar films, documentaries, and TV series discussing or related to the HIV/AIDS epidemic or LGBTQ issues is far longer than my ten fingers can count (certainly more than films with Asian American representation), but when was the last time I saw an Asian person represented as living with HIV, on screen, in either documentary form or movie form?

The answer is zero (but I would love to stand corrected by anyone reading this). At least, in the American context. I can think of at least one Taiwanese film featuring an Asian person (specifically – “The Teacher,” or “我的靈魂是愛做的” in 2019) with HIV, but none in the American context. And the reasons for this, I suspect, are numerous.

Asians in America are far more diverse than the narrow “model minority” myth will allow. We are represented in statistics that represent both communities living in extreme poverty and extreme wealth. Asian American and Pacific Islander identifying patients with HIV in my clinic have cultural and ethnic roots throughout at least 13 countries or autonomous regions in Asia, and span anywhere from first generation to sixth generation Americans. And yet despite this incredible diversity – or perhaps because of it – there is a profound loneliness from being unseen or uncounted across several domains – along race, ethnicity, gender identification, and/or sexual orientation. There is a profound, indescribable and additive sense of loneliness and feeling of marginalization every time we read of an attack on a member of the Asian American and Pacific Islander community, or an LGBTQ+ identifying person, or both.

Among the projects that I’m grateful for that I can point some of my patients towards to feel a sense of community, and less alone in the world, one that stands out is the Banyan Tree Project, which collects first person narratives from Asian American and Pacific Islander-identifying people living with HIV. Stories like CC’s, a Chinese-American transgender woman, serve as a testament to some of my patients undergoing a new diagnosis of HIV, or who may be for the first time taking their first steps towards gender confirmation. Allowing patients to see what is possible, and to reduce the sense of “invisibility,” is essential to the healing process – and finding the spaces to be seen and heard. Stories and narratives that disrupt the “model minority” myth are crucial to self-awareness, better insights into identity formation, and healthy behaviors in welcoming medical treatment for HIV/AIDS.