WE ARE LIFETIME SURVIVORS - ARTICLE
"People born with HIV are reclaiming their experiences—and giving themselves a new name."
As a little girl, Porchia Dees and her family drove an hour from their home in San Bernardino, California, to Children’s Hospital Los Angeles every month. These visits were routine for Dees, who was always sick and on medication. She had a team of doctors and social workers she saw often. Dees knew something was wrong, but she couldn’t figure it out. One day, she finally learned the truth. “I had always heard the word HIV,” says Dees, now a 37-year-old health educator and HIV advocate. “I just didn’t know what it was.”
WE'RE STILL HERE - FILM
We’re Still Here (2015) shares the untold stories of the first generation of children who were born with HIV in the 80s and 90s. The film follows director Grissel Granados as she embarks on her own journey to seek out other people who were born with HIV and create community where it hadn’t existed before. Now as adults, these long-term survivors are telling their stories in their own words and on their own terms. We’re Still Here gives testament to those who weren’t supposed to be here, and who refuse to be forgotten in the history of HIV/AIDS.
PERSONS WHO AQUIRE HIV AT BIRTH NEED BETTER SUPPORT - BRIEF
People who acquire HIV from their birthing parent during pregnancy, childbirth, or during breast or chest feeding, as well as those who acquire the virus via blood transfusion before 5 years of age, are considered to be cases of perinatally-acquired HIV. Affected individuals themselves, however, are organizing under preferred terms of “Dandelions” or “Lifetime Survivors” which are the names of two networks they are forming to provide mutual support and advocacy. For brevity, we refer to Lifetime Survivors and Dandelions interchangeably for this whole group of people and we are not specifically referring to members of either the Dandelions Movement or the Lifetime Survivors Network. It is estimated that in 2019, there were 12,355 Lifetime Survivors out of roughly 1.2 million people with HIV in the U.S.
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