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SMART’s Beginnings

Susan Rodriguez, SMART’s Founding Director, was diagnosed with HIV in 1995. Her HIV/AIDS activism work began with the PWA Health Group, a NYC Buyers Club offering HIV+ New Yorkers speedier access to treatment options not yet approved by the FDA. The PWA Health Group had expanded its reach to include a Women’s Treatment Project, where Susan became a regular presence. Her involvement was personal. She needed information, and, as a newly diagnosed woman, had already encountered barriers of stigma and lack of resources, both for women and children living with HIV. Her first important relationship at the PWA Health Group was with Lorna Gottesman, coordinator for the Women’s Treatment Project, with whom she shared a vision of a pediatric group. Lorna discussed this idea with board members, including John Falkenberg, Dr. Jeff Birnbaum, Catherine Hanssens, and Dr. Joe Sonnabend, beginning Susan’s partnership with these remarkably caring people. John, in particular, was instrumental in launching the Pediatric Working Group, as well as exerting an enormous influence on Susan’s future trajectory with SMART.

So how did SMART begin? As Susan remembers, in 1997 she met someone at a women’s HIV conference in Pasadena and, feeling empowered, disclosed her status. As this person had a connection to POZ Magazine, the encounter led to Susan’s appearance on a cover of POZ (for the first time). Susan believes that this visibility later strengthened their application to Glaxo Wellcome, who, with World (Women Organizing in Response to Life-threatening Diseases), was sponsoring “HIV Universities for Women” across the country. Susan and Lorna were one of 10 teams invited to attend training for this initiative in California. With small seed money from Glaxo, they recruited other women, some from the Pediatric Working Group, to participate in the new venture. Susan was able to secure a meeting place at Draper Hall in Metropolitan Hospital, where she served as a representative on various committees. At their first focus group, the women came up with the acronym SMART, mainly due to there being some kind of “smart” study going on at the time. Assigning words to match the initial caps, they decided on “Sisterhood Mobilized for AIDS/HIV Resources and Treatment,” though the name shifted slightly during the 501(c)(3) application process, the “R” having been mistakenly transcribed as “Research” instead of “Resources,” which just seemed too complicated to correct! And so SMART became Sisterhood Mobilized for AIDS/HIV Research and Treatment.