Contact: Jennie Smith-Camejo, jsmithcamejo@pwn-usa.org, 347.553.5174

April 2, 2019: Engagement and retention in care are critical following an HIV diagnosis. While there are many barriers to engagement and retention in care, studies show that stigma, discrimination, or judgment from care providers is a substantial hindrance to treatment and prevention efforts—and a major roadblock in the lives and wellbeing of people living with HIV—one that is often amplified for women of color and transgender women. “Be Your Own Best Advocate,” the newest installment in the PWNCares multimedia series by and for women living with HIV, addresses many of the attitudes and behaviors that have caused women living with HIV to steer clear of doctors.

The video, which features interviews with four empowered, thriving women living with HIV who have all overcome significant challenges to staying in care, will premiere Tuesday, April 9, at 1pm EDT/10am PDT during a virtual coffee table chat, where participants will have the opportunity to ask the women from the video questions about their experiences, seek suggestions, and share their own experiences.

WHAT: Launch of PWNCares: Be Your Own Best Advocate and virtual coffee table chat

WHEN: Tuesday, April 9, at 1pm EDT/10am PDT

WHERE: Online—register here

WHO: Targeted for women and transgender people living with HIV; health care providers are also encouraged to attend and/or watch the video or recorded webinar

FOR MORE: Learn more here and watch the teaser video here (or above).

“I remember going to a clinic and explaining to them that I was HIV-positive, and I felt like I was given an extra exam, like [they were] looking for cuts or open places of entry or exit,” recounts KeivaLei Cadena, a Hawaiian woman of trans experience living with HIV, in the video. She also explains that HIV is not the only or even biggest stigma that makes doctor appointments challenging: “Going to the doctor before I started transitioning was effortless. I didn’t have to think too much about it. Going to the doctor after transitioning, there’s always anxiety. There are times even still today, 25 years after transitioning, that if I don’t feel up to it, I just skip the appointment.”

Tranisha Arzah, a young woman who was born with HIV, describes how personal issues during her adolescence affected her adherence to treatment—and how a doctor who shamed her and threatened to stop prescribing her medication when she opened up about what she was going through made it worse. “There’s very little guidance and support for young people living with HIV to transition into adulthood, especially in this medical care system. There’s no easy way to navigate something where you don’t know what’s going to happen or what it looks like. Learning how to advocate for myself was a journey; it wasn’t something I knew how to do right away.”

The videos not only describe what happens when health care providers are wrong—it also shares insight into what makes for a good doctor/patient relationship, and what women living with HIV can do to make sure they get what they need. “When I didn’t know how to be an advocate for myself, I felt really powerless,” Tranisha explains in the video. “Now that I have practice advocating in different ways and settings, I feel like I can take my life back and take control of the direction it’s going.”

“Be Your Own Best Advocate” is the seventh installment in the #PWNCares multimedia series, which Positive Women’s Network – USA (PWN) launched in October 2017 with a generous Positive Action for Women grant from ViiV Healthcare. The series addresses some of the most pressing questions women face following an HIV diagnosis—and which are best addressed through conversation with peers. The topics came directly from PWN members, all women living with HIV, and the interviewees are cisgender and transgender women living with HIV of varying ages, races, ethnicities, geographic locations, and socioeconomic backgrounds. The videos are available on PWN’s website at pwn-usa.org/pwncares along with discussion guides for use in support groups, meetings, or events, and the recorded virtual coffee table chats.

“As peer-led services for people with HIV are disappearing, we are thrilled to launch #PWN Cares, which will fill a critical gap: supporting women living with HIV during moments of isolation,” said Naina Khanna, executive director of PWN-USA. “Feeling alone is a major barrier to engagement and retention in care. Many women, especially outside of major urban centers, may not know any other women living with HIV. Our goal is to provide them the tools, knowledge and support they need to make healthy decisions for themselves and live life to the fullest - while also offering a pathway into a national community of women living with HIV."