WORLD (Women Organized to Respond to Life-threatening Disease) began in founder Rebecca Denison's living room in May 1991. When Rebecca unexpectedly tested positive for HIV, she looked for educational material specifically for women. Unable to find resources or adequate information focusing on the unique needs of HIV-positive women, Rebecca and a small core of HIV-positive women began producing a newsletter featuring personal stories of women and any treatment information they could piece together. From the beginning, the message to women has been "you are not alone." Today, this newsletter reaches 12,000 people in 87 nations around the world. The United Nations now reports that half of those infected globally are women. WORLD's growth over the years has paralleled the increasing number of women infected with HIV, and the need to provide education and information to this growing population. WORLD has grown to a paid staff of 11 and a volunteer staff of over 100
Organizational Mission
WORLD is a diverse community of women living with HIV/AIDS and their supporters working together to:
Provide support and information to women with HIV/AIDS and their families, friends, and loved ones.
Educate and inspire women with HIV/AIDS to advocate for themselves, one another, and their communities.
Promote public awareness of women's HIV/AIDS issues and a compassionate response for all people with HIV/AIDS.
Current Programs and Activities
WORLD's current programs and activities include:
HIV University: A 12-week school for educating women about living with HIV developed by and for women with HIV to learn about treatments and living with HIV. Also includes a session, "Living Longer" that incorporates safer sex information as well as the impact of sexually transmitted diseases on people living with HIV. Over 80% of enrollees have been women of color who take what they learn back to their communities. There are over 100 local graduates and 40 pilot programs nationwide.
Peer Advocates: Women from WORLD do outreach to HIV-positive women and men in Oakland and Berkeley to link them to health care and services (housing, substance abuse treatment, etc.) and to provide one-on-on-one peer support and education.
Perinatal Peer Advocacy: WORLD has a specialized position within its Peer Advocacy team to provide information to HIV-positive women who are considering pregnancy or are new mothers. This staff person also provides information to care givers and advisory groups regarding the intersection of HIV and perinatal transmission. WORLD has, for example, provided consultation to the National Institutes of Health, Centers for Disease Control, and the Institute of Medicine on issues connected to pregnancy and HIV.
Latina Initiative: WORLD's full-time bilingual Latina Peer Advocate provides peer support, education and advocacy as part of a collaborative Latina Initiative with the Family Care Network, a Ryan White CARE Act funded East Bay collaboration. The current staff person is collaborating closely with Project Inform to bring a stronger "prevention with positives" focus to WORLD.
WORLD Newsletter: A quarterly, 8-page newsletter with over 12,000 readers in over 89 countries which has published personal stories of over 300 women living with HIV, in addition to treatment updates, resources, and other information about living with HIV. The newsletter has also included a prevention and perinatal focus since its inception -- articles have included: "Sex: If it isn't Safe, it isn't Sexy" (October 1991); "Heterosexual Transmission Update" and "Mother to Child Transmission of HIV" (August 1993); "A Call to Action: Prevent HIV Infection in Newborns" (April 2000); and a cover story in February 2003 chronicling the story of an HIV-positive woman who gave birth to two HIV-negative babies due to proper medication regimen. There have been over 148 issues of the newsletter published.
Speakers Bureau: Education about HIV and AIDS locally, nationally and internationally primarily about AIDS prevention. Over 70 women with HIV have spoken about HIV/AIDS at conferences, schools, churches, media (local, national and international newspapers, magazines and television) and in several videos.
AIDS Resources Library with Internet access for clients: Free AIDS literature in English and Spanish, resource guides, brochures, community bulletin boards, videos, and materials on women and AIDS.
Retreats for HIV positive women: 3-day retreats that provide 50 women with education, stress management, and support. There have been 24 retreats in 12 years and attendees have come from across the nation and around the world.
LINCs Program: An outreach program designed to engage and assist women who have been newly diagnosed or are hard to reach and are not accessing the medical care and support services that they need.
The Lotus Project: A national HIV+ women's peer advocacy replication and training project is partnering with women's organizations around the nation to train positive women to be peer advocates for other HIV+ women in their communities.
Information and Referrals: WORLD provides peer support, information and referral to HIV-positive women, families, and service providers, averaging 50 or more calls per day for the last six years.
Outreach to Prisoners with HIV/AIDS: WORLD provides free subscriptions and printed information to HIV-positive prisoners nationwide, does visitation and advocacy for women prisoners in Chowchilla, and provides peer support to HIV-positive prisoners released to our community.
Prevention: Prevention with positive women, their partners and their families is embedded within the work that WORLD does. Recent funding from the Alameda County Office of AIDS Administration is providing direct support for prevention messages and kits for positive women.
Advocacy: Women from WORLD advocate for their communities on Boards of Directors, Community Advisory Boards, Ryan White and community prevention Planning Councils, conference planning groups, and the Women's Interagency HIV Study. WORLD has also provided consultation for policy-makers and funders.
Collaborations: WORLD has a strong history of collaboration with many organizations, including the Family Care Network, Project Inform, La Clinica de La Raza, the Alameda County African American AIDS State of Emergency Task Force, and Highland Hospital. HIV U and retreats have involved over 200 providers from over 40 Bay Area agencies.
Constituency
WORLD is driven by, supported by, and serves HIV-positive women. WORLD's clients are HIV-positive women. More specifically, WORLD's clients are:
65% African-American; 15%: Latina; 15% Caucasian, and 5% Native American and Asian.
80% low-income, struggling to maintain housing; 20% middle-class, working women; and
10% over 50; 55% 35-49; 30% 25-34; and 5% 18-24.
Additionally, 30% of WORLD's constituency has an AIDS diagnosis, over 50% do not work outside the home, most have children and many, currently or in the past, have struggled with substance use. Participants in WORLD programs are diverse in terms of education, literacy, English fluency and sexual orientation.
Women who participate in WORLD have emerged as leaders in the epidemic. Numerous women have joined local Ryan White CARE and community prevention Planning Councils and Boards of Directors. HIV-positive women make major decisions that impact their services -- for example, regarding HIV University -- women elect their own Deans in each class, they choose the curriculum, plan the graduation event, etc. In short, HIV-positive women are extremely involved as leaders in WORLD's work and the work of the larger community.
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