What Do Young Women with HIV Need?


Contact: Olivia Ford, oford.pwnusa@gmail.com / 347.553.5174

April 10, 2015 – This National Youth HIV/AIDS Awareness Day (NYHAAD), Positive Women’s Network – USA honors young trans and non-trans women living with HIV – long-term survivors as well as more recently diagnosed individuals – and affirms the unique needs of young people with HIV.

In conversations and advocacy around issues facing young people living with HIV, “youth” is often considered synonymous with young gay and bisexual men; and this focus is certainly warranted, given the rates of HIV incidence in this group. However, all young people living with HIV have distinct needs and challenges, and require culturally relevant, coordinated, expert care and support to thrive. It’s not clear that there has been adequate attention to the particular issues that may face young women with HIV, including transgender women.

gaps_nyhaadIn the US, more than half of women and girls diagnosed with HIV in 2010 were between the ages of 13 and 34. Young women of color, and particularly young Black women, bear the heaviest burden of HIV in this group. HIV diagnoses continue to increase among young people, and CDC’s latest surveillance report shows that rates of death for young adults with AIDS diagnoses who acquired HIV perinatally are increasing.

This points to a need for more programs of the kind provided under Part D of the Ryan White Program – including comprehensive services that help young people with HIV transition to adult care – not fewer. And while more information about transgender women in general is sorely needed, the data that do exist show that young transgender women are profoundly impacted not only by HIV and its stigma, but also by transphobia, discrimination, and lack of family support.

tranisha_PWN quote picture
Tranisha Arzah.

“As a young women living with HIV, I want to see an integration of HIV and sexual and reproductive health services in place,” says Tranisha Arzah, a 24-year-old peer advocate in Seattle, Washington, who was diagnosed with HIV in 1990. “We need to face these gaps as intersectional barriers to change.”

Grissel Granados, who has been living with HIV all her life, echoed the call for holistic sexual health care for young women with HIV, and adds a call for more spaces for women living with HIV to connect with peers. “It is not acceptable to have absolutely zero resources for young women when it comes to social-emotional support,” she says. Granados is a social worker by training, works at Children’s Hospital Los Angeles, and serves on the Presidential Advisory Council on HIV/AIDS. “Young women living with HIV feel stigma as it is; we can’t isolate them further by not providing spaces that are supportive of their unique needs and experiences.” Read more of Granados’ perspectives on the needs of young women with HIV

whatplwhneedThis dire need for increased emotional, psychosocial, and mental health support for young people living with HIV hit close to the hearts of many in the HIV community at the beginning of this year, with the passing of Chakena “CC” Conway / David Isaiah Joseph. CC was an artist, and advocate, and the youngest founding member of PWN-USA, only 21 years old at the convening of 28 diverse women living with HIV that gave birth to the network in 2008.

CC Conway / David Isaiah Joseph.

Born with HIV, CC (who identified for several years as David, a transgender man, but was, according to friends, going by “CC” at the end of their life) had loving friends and mentors, and benefited from advances in medication. However, in facing a lifetime of challenges – including lack of family support – “We get tired,” says Quintara Lane, a longtime friend of CC’s and an advocate who has also lived with HIV since early childhood. “Even adults need motivation to push [toward being healthier and taking meds] – that hand-holding situation. CC was tired of taking meds. Now CC knows a life without HIV.” Read what fellow advocates and loved ones had to say about CC

What did CC need in order to know a life of well-being and dignity, with HIV? Did providers ever ask them, and tailor programs accordingly?

To commemorate NYHAAD, and in memory of CC / David, PWN-USA invites young women with HIV to tell us what they need – to share opinions, thoughts, experiences, and demands in response to the question:

What do you think are the greatest needs of young women living with HIV today?

We strongly encourage young women living with HIV to respond to the survey below (also linked above); and PWN-USA looks forward to advocating more effectively for the needs of young women with HIV.


NYHAAD Blog Entries

Mina Meet Mina, a Teen Living with HIV

Resources and Reproductive Justice for Young Women Living with HIV

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