Susan Rodriguez was a mother of three young children when her husband was diagnosed with AIDS in 1995. Before that, she knew little about the disease—not even that she could be at risk. A year and a half later, Rodriguez’ husband died, leaving her a single mother who had tested positive for HIV. She later learned that one of her children also had the virus, passed on by mother-to-child transmission.
Devastated, Rodriguez began looking for information about her disease through what she calls “unofficial channels.” But she soon concluded that she and other women in her community needed better sources of information. Her daughter’s diagnosis at age three rallied her to action. She connected with a women’s treatment project sponsored by a local AIDS organization, and a short time later was invited to participate in a training planned by a group called Women Organized in Response to Life-Threatening Diseases (WORLD) in Oakland, Calif. Rodriguez emerged from that training an activist.
“In my search for information, I found that women’s needs were not being addressed,” Rodriguez said. “I wanted to create something that would help women better manage their disease, and also help them get control of their lives again. That’s something you feel you’ve lost when you’re diagnosed with HIV or AIDS.” So, she created SMART University—Sisterhood Mobilized for AIDS Research and Treatment—to provide women with the knowledge to understand their disease and the skills and tools to navigate the health system. SMART is a project of the Fund for the City of New York.
For her courage and commitment in creating a program that helps low-income women with HIV stay as healthy as possible, Rodriguez was named one of 10 recipients of the Robert Wood Johnson Foundation Community Health Leaders Award, which honors exceptional men and women who have overcome significant obstacles to tackle some of the most challenging health and health care problems facing their communities.
Run by and for women with HIV, SMART University is, in Rodriguez’ words, “the bridge between the patient and the provider.” The program covers every aspect of disease management, helping the patient understand everything from medications to acupuncture, to computer skills, to healthy cooking on a budget and, of course, questions to ask the doctor.
Community Health Leaders National Program Director Janice Ford Griffin said, “Susan Rodriguez demonstrates extraordinary courage in the face of overwhelming personal health challenges to provide critical information and support to women who would otherwise fall through the cracks. Her generous spirit has been the foundation for developing partnerships with other organizations for services often unavailable to poor women in our complex health system.”
“HIV is not a one-treatment-fits-all type of disease. We try to give women better information so that they can take better care of themselves,” said Rodriguez, who has also battled breast cancer. “There are certain life experiences that can make you more vulnerable to HIV, like domestic violence, so we put a real emphasis on how to develop healthy relationships.”
Another one of Rodriguez’ goals is to help women find their voices and become activists themselves. “We’re 30 years into the epidemic and still there is a terrible stigma associated with it,” she said. “So we encourage our participants to seize opportunities like testifying in Albany or before Congress, and working to adopt policies that will help prevent and treat the disease. When you get people back on their feet, they can just take off.”
Rodriguez’ children have followed in her footsteps, starting a group to support HIV positive youth as part of SMART.