Heroes in the Fight: Meet Shannon

Tacked above Shannon Weber’s desk is a birth announcement. Photos show a newborn girl, nicknamed “Pom Pom,” with soft-looking dark hair, long-lashed eyelids closed in sleep, and fingers curled against a blanket. When Weber received the announcement, she cried.  

Why? Because Weber played a unique role in this baby’s journey into the world: She connected the child’s HIV-negative mother and HIV-positive father with the resources they needed to conceive their daughter safely. 

Weber has worked as the coordinator of the Bay Area Perinatal AIDS Clinic at the University of California, San Francisco, since 2011. The clinic provides preconception counseling and prenatal care for women who are living with HIV or whose partners are HIV positive, as well as round-the-clock expert clinical consultation. In addition, Weber is the longtime director of the National Perinatal HIV Hotline, a 24-hour clinician-to-clinician consultation hotline and referral network of providers for HIV-positive women.

“My goal is always to engage women in care with someone I would send my sister to,” she smiles. "We really have all the resources to help women have their babies in a way that feels best for them, if we can support their provider, and if they feel connected with their provider.”

One of those resources is PrEP, short for pre-exposure prophylaxis, a prevention strategy in which HIV-negative people take a daily pill to reduce the risk of infection. The antiretroviral drug Truvada has proven highly effective as PrEP when taken as prescribed—but providers have not been unanimously enthusiastic about prescribing it.

That’s one way Weber helped Pom Pom’s mother, Poppy Morgan (not her real name), who was desperately seeking a way to conceive safely with her HIV-positive partner. After years of setbacks—including her family practice doc coldly refusing to prescribe PrEP and showing her the door—Poppy got a new provider referral from Weber, met with a better-informed clinician, and soon had the prescription in hand.

Thanks to PrEP, timed intercourse, and her husband’s undetectable viral load, Poppy gave birth to a healthy baby in April 2013 and remains HIV negative. She continues to advocate fiercely for women’s access to PrEP and other options for safer conception.

Weber recently hosted a salon to celebrate the release of a new book that tells Poppy’s PrEP-to-parenting story: Positively Negative, by health journalist Heather Boerner. “If I tell anyone outside the HIV world, ‘We actually have the science to end the epidemic; what remains is implementing and scaling up effective interventions,’ they’re blown away,” Weber says. “If you read Heather’s short, easy, fun book, you can understand what incredible promise we have to make a huge difference for people.”

Women’s access to PrEP has become a passion of Weber’s. She is looking forward to BAPAC’s autumn launch of a “PrEP-ception” study of mixed-HIV-status couples using PrEP to conceive, and she is tremendously proud of the two-year-old PRO Men program at San Francisco General Hospital’s Ward 86, which reaches out to the girlfriends and wives of HIV-positive men with options for safer conception and pre-pregnancy health care. For the BAPAC website, she helped launch a series of educational videos with clinicians and real couples talking about safer conception strategies, as well as downloadable pamphlets that women and their partners can use to educate themselves—and their providers—about PrEP and other HIV prevention options.

“Clinicians need to know some real basics about what PrEP is and how they would use it in their practice—with the end goal not that everyone is on PrEP, but that everyone is offered a comprehensive HIV prevention package,” Weber explains.

Her interest in women and PrEP is both local and global: At the 20th International AIDS Conference, held in July 2014 in Melbourne, Australia, she and fellow members of the U.S. Women and PrEP Working Group facilitated a “multilogue” to share what we know about PrEP’s safety, efficacy, and use among women in the United States, and to discuss how to best use this relatively new HIV prevention tool to serve women around the globe—including transgender women, sex workers, and women who use drugs, three extremely stigmatized and marginalized populations at increased risk for HIV infection.

Weber and colleagues walked away from the session with two whiteboards’ worth of notes from the engaged and enthusiastic audience. “It was inspiring to talk about what we’ve done for U.S. women and PrEP in the last few years, and how we could share that experience and adapt it for people in other countries,” she enthuses. “It was really beautiful!”

Also beautiful? Bringing her unique art form to the Melbourne conference. A longtime artist, Weber began creating street art to make first her neighborhood, then her city, and now the world a more loving place: “I write love notes and hang them on fences for people to find, and I also make paper love notes for live love-note writing experiences,” she explains, smiling. “I’m on a mission to change the world, one love note at a time.” (Watch a video about Weber’s amazing “Love You Too” project here.)

Equipped with a folding table, several reams of paper, and one large wall, Weber created an installation called “Dear HIV: Notes to the Epidemic” at the AIDS 2014 Global Village. For five days, conference participants wrote their own responses to printed prompts such as “I love...” and “Today I will...” and displayed them side by side for all to witness.

“People approached the notes with reverence,” Weber recalls. One note that gave her goosebumps read, "Thank you...to the HIV epidemic for leading the way for gay rights.” Other notes memorialized those lost on Malaysian Airlines flight 17—including HIV researchers and advocates headed for AIDS 2014—three days before the conference began. Still others, such as “Today I will...start treatment” and “I love...my poz boyfriend,” were deeply personal.

“I’ve done lots of live love-notes events, and often I have to explain to people what to do or what to write,” says Weber, “but at AIDS 2014, people just got it.” She was also moved by the sheer diversity of the note-writers: “People from all over the world—Sri Lanka, Pakistan, Belgium, Nepal, Uganda, Italy, France. So many countries and languages!”

Weber had something else up her sleeve at the conference, as well: Bestowing shimmery, hand-sewn capes to advocates and researchers she considers superheroes in the response to HIV/AIDS. “I really want to acknowledge people who are doing small things that make a difference, the unsung heroes who are doing this work every day,” she says. “In perinatal HIV work and in PrEP advocacy, there are so many people who are giving the best part of themselves.” Weber “caped” four such superheroes, including SisterLove founder Dazon Dixon Diallo and social scientist Judith D. Auerbach, both of whom are doing vital work around women and PrEP.  

And on a recent August evening in Weber’s living room, two more capes were exuberantly delivered: a glittering red one to a grinning Poppy Morgan, and a tiny, sparkly one for Pom Pom, now a healthy 15-month-old.

Have you seen how Shannon and other HIV prevention advocates are making a difference for couples and families affected by HIV? Leave them a word of thanks in the comments below!

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