The Metro DC Collaborative for Women Living with HIV/AIDS--Telling the Story.
In 1994, the Center for Women Policy Studies and PROTOTYPES (*) created the Metro D.C. Collaborative for Women with HIV/AIDS (MDCC) with funding from the Health Resources and Services Administration (HRSA), under the Special Projects of National Significance (SPNS) program of the Ryan White CARE Act. The Collaborative is a unique endeavor designed to establish linkages among local service providers and create a cadre of women living with HIV/AIDS who are actively involved in public policy advocacy. Intended to reduce the cultural, linguistic and organizational barriers to care for women living with HIV/AI DS in the metropolitan Washington, D.C. area, the Collaborative's success makes it a model that can be implemented in communities nationwide.
Through a series of activities -- including research, information dissemination, capacity building and training of providers, advocacy training and cadre building activities for women living with HIV/AIDS, and policy analysis and development in partnership with women living with HIV/AIDS -- the Center for Women Policy Studies created a replicable model to address barriers to care faced by women living with HIV/AIDS. What follows is a road map of strategies, structures and evaluation data to assist policy makers, advocates and women living with HIV/AIDS to bring the Collaborative model to their own communities. We hope the Center's work will inspire others to develop and implement woman-centered HIV/AIDS policy initiatives and programs that will respond to women's self-defined needs.
The AIDS epidemic among women continues to grow. Although there is an overall decline in AIDS incidence and death in the United States, AIDS-related deaths have not declined as much for women as for men and women remain the fastest growing group of newly reported AIDS and HIV cases. In the United States, women of color continue to be the most severely affected by AIDS. While African American women and Latinas account for 21 percent of all women in the United States, in 1997 they were 82 percent of the estimated number of adult and adolescent women with AIDS -- at 63 percent and 19 percent respectively (CDC, 1998a as cited in Gaberman and Wolfe, 1999).
The risk for HIV/AIDS is increasing most alarmingly among young women and especially young disadvantaged African American women, who are being infected with HIV at younger ages and at higher rates than their male counterparts (NCHSTP, 1998b, as cited in Gaberman and Wolfe, 1999).
To respond to this women's epidemic, the health care and services infrastructure must change to meet the unique needs of women living with HIV/AIDS Several studies show that women who are diagnosed with HIV early and who receive appropriate treatment live as long as HIV positive men; but survival times for women are shorter than for men primarily because women are less likely than men to receive an early diagnosis and treatment (NIAID, 1997b, as cited in Gaberman and Wolfe, 1999).
Because HIV/AIDS affects women differently than men, women with HIV/AIDS have an urgent need for doctors who are specialists in HIV/AIDS and women's health. Many women with HIV/AIDS also live in poverty and depend on Medicaid for their health care (Center for Women Policy Studies, 1997c). In addition, women living with HIV/AIDS often carry a large burden of caring for children and other family members who also may be living with HIV. Women therefore need access to social support services -- such as housing, transportation and child care -- to enable them to adhere to treatment regimens (NIAID, 1997b, as cited in Gaberman and Wolfe, 1999).
Since the creation of the National Resource Center on Women and AIDS Policy in 1987, the Center for Women Policy Studies has been in the forefront of efforts to address HIV/AIDS policy from women's diverse perspectives, with particular attention to the self-defined needs of women of color and low income women. It remains a hallmark of the Center's work to listen to the women on the front lines of the epidemic in order to continue to be effective advocates for women in federal and state policy making. For example, the Center has a strong history of identifying and evaluating exemplary HIV/AIDS programs for women in different communities and geographic areas. During the first years of the National Resource Center on Women and AIDS Policy, the Center filled a void by producing an annual Guide to Resources on Women and AIDS and a video and Action Kit, "Fighting for Our Lives": Women Con fronting AIDS, that featured several exemplary local HIV/AIDS outreach programs for women of color, developed and run by women o f color.
In 1992, under contract from the Health Resources and Services Administration (HRSA), the Center conducted an evaluation of the Ryan White CARE Act's Title I planning and funding allocation processes in four eligible metropolitan areas (EMAs) -- Miami, Chicago, Los Angeles, and Washington, DC. The evaluation assessed whether and to what extent women with HIV/AIDS -- and their advocates -- were represented on Planning Councils and participated in the decision making process, whether and how the need for services for women was being identified, and whether and to what degree funding allocations reflected these needs.
The study's results showed that experts and advocates for women with HIV were rarely represented on planning bodies and that those organizations that did serve women rarely participated on the Planning Council. As a result, the study found a lack of expertise represented on Planning Councils regarding women-specific HIV/AIDS issues; thus, these issues were rarely discussed. The study noted that because of sexist attitudes and the marginalizing of women's issues, many women with HIV/AIDS and their providers felt politically powerless and disenfranchised, even when they were at the table (Viruell and Wolfe, 1996).
The study also found major differences in perspective and opinion between Council members and non-Council members. Indeed, Council members often did not recognize problems with representation and participation; for example, one Council member said of women that: "There are no barriers, there are plenty of women" (Viruell and Wolfe, 1996). Yet, in all four cities, white men held most of the seats on the Planning Councils and the politics of funding and selecting Council members reflected an "old boys" network that excluded women. The few women who did sit on the Council often were not representative of women with HIV, nor were they experts on women's needs. Instead, they usually were white/Anglo professionals representing agencies that did not serve women with HIV primarily. As a result, women said that the Planning Councils only represented the "old epidemic" and its politics: "In 1990 [when Councils were formed] the attitude was 'women don't get HIV'" (Viruell and Wolfe, 1996).
In addition to its national focus, the Center has always been especially attuned to the needs of women with HIV/AIDS in its hometown of Washington, D.C. The stories of women in Washington who have received support from the Center's PS Emergency Fund for Women with HIV/AIDS confirm our research findings and affirm our belief that inclusion of women with HIV, their advocates and care providers in policy development is essential if women's needs are to be met.
The Center also has been called upon over the years to share its expertise with colleagues in other AIDS organizations. For example, the Center's president served on the National Community AIDS Partnership (now the National AIDS Fund) Working Group to identify the needs of women, children and families facing AIDS. Working Group members conducted interviews, focus groups, and meetings with women advocates, service providers and women living with HIV/AIDS in several cities and produced a report, Voices of Courage, a Choir of Needs: Women, Youth, Families and HIV/AIDS, that identified several key strategies and recommended that programs be implemented to nurture the leadership of women with HIV/AIDS in all local, state and national efforts to build legitimate and effective services for women with HIV/AIDS (National Community AIDS Partnership, 1992).
The findings of the Center's evaluation of Title 1 Planning Councils in Washington D.C. proved to be an invaluable tool in the creation of the Collaborative. According to Edna Viruell-Fuentes, the process evaluation documented "the way women were treated in Title 1 Planning Councils and how this process -- that was intended to be a community participation process that would be open to the people whose lives are affected by the decisions that these bodies make -- was not working for women. And the way I thought about the Collaborative was that we had an opportunity to intervene at multiple levels and affect what happens in decision making bodies; and part of that was working with providers and part of it was working with policy makers and with women" (Center for Women Policy Studies, 1999a).
The Health Resources and Services Administration (HRSA) also had recognized the need to address the problems faced by women living with HIV/AIDS: "In order to best serve the needs of people with HIV disease, new delivery models of HIV-related health and support services must be designed and tested, lessons learned must be shared and successful models must be adapted elsewhere" CHRSA, 1994). With encouragement from a colleague at HRSA, therefore, the Center and Los Angeles-based PROTOTYPES "developed a project focusing on women with HIV, because SPNS had not funded much on women with HIV," according to Leslie R. Wolfe (Center for Women Policy Studies, 1999a).
Women with HIV/AIDS in Metropolitan Washington, DC: In 1994, the Collaborative's first year, the metropolitan Washington D.C. region (the District of Columbia, Maryland and northern Virginia), reported a rate of increase in new AIDS cases that was higher for women than for men. The District of Columbia itself reported an alarmingly high HIV seroprevalence rate among women ages 15 to 44; whereas the national seroprevalence rate was .15 percent, the District rate was 1.49 percent, according to a needs assessment conducted by the Title 1 Planning Council. In fact, the proportion of AIDS cases among women consistently increased in the six years prior to the creation of the Collaborative. Of the women living with HIV/AIDS in the metropolitan area at the time, 75 percent were African American or Latina and 25 percent were white. Fifty-one percent lived in the District of Columbia, where the majority of services for women were concentrated; but more than a third (35 percent) lived in suburban Maryland and 14 percent lived in Northern Virginia.
Fifty-six percent of women with HIV/AIDS in the metropolitan D.C. region were reported to be injection drug users. In 1992, the DC Agency for HIV/AIDS reported that substance-abusing women were becoming infected with HIV at a higher rate than substance-abusing men, yet women comprised only 19 percent of the clients in federally funded drug treatment programs. Barriers to adequate drug treatment included male-focused treatment models, inadequate accommodations for pregnant women and women with children, minimal social supports for women, pressing family and economic responsibilities, sexual harassment within treatment programs, and insufficient information about women and chemical dependence. Women exposed to HIV through heterosexual contact (primarily with injection drug using men) comprised at least 39 percent of reported AIDS cases among women in the metropolitan D.C. area. For many women, HIV is linked to the older women's epidemic -- domestic violence; and the Center and PROTOTYPES recognized the urgency of addressing the needs of women with HIV who are in abusive relationships.
The Planning Council's needs assessment also stated that a relatively large proportion of women with HIV in this region were low income, with 90 percent reporting an annual income below $12,000; most were uninsured or underinsured for the extensive medical needs related to HIV. It was clear at the outset that low income women living with HIV/AIDS faced major barriers to access to medical care, as they had to navigate a labyrinth of systems and bureaucracies, particularly to gain access to entitlement programs for which they were eligible. This was an especially difficult task for many low income women who also were the sole financial support and caregivers for their children and other family members living with HIV/AIDS.
At the creation of the Collaborative, the Center and PROTOTYPES conducted a literature review on barriers to care identified both by women and by AIDS service providers. Women living with HIV/AIDS identified such barriers to care as fear of losing their children, low self-esteem, lack of knowledge of service providers' rules and procedures, lack of information regarding services and resources, lengthy waiting lists to obtain services, distrust of authority, domestic violence, multiple responsibilities for others' care, difficulty with scheduling, substance abuse, dual diagnoses, lack of information and knowledge about HIV/AIDS, and lack of social supports.
Service providers identified several barriers to providing care, including their own lack of training, their insensitivity and lack of cultural competency, the lack of services available in places where women typically seek help, the lack of women-oriented, women-sensitive services, providers' reluctance to treat women or work with "non-compliant" clients, sexual harassment, and lack of child care and other support services. Providers also noted that they did not have women on staff, that they lacked both resources and knowledge about HIV/AIDS in women, and that "turf battles" affected their ability to serve women.
The Center and PROTOTYPES believed strongly that the number of service providers in the metropolitan D.C. area that focused on women could be expanded and therefore proposed to include not only Ryan White CARE Act grantees but also agencies that already provided services to women but were not funded through the Ryan White CARE Act; the Collaborative also planned to reach women's health service providers that were not yet providing HIV/AIDS-related services to women. Finally, the Center believed that the active involvement of women living with HIV/AIDS in policy leadership was essential to the improvement and expansion of women-centered HIV/AIDS services.
To address these twin goals, the Collaborative defined seven objectives to reduce barriers to care for women with HIV/AIDS, including: comprehensive assessment of barriers and problems within the HIV/AIDS care and related health-care system within the metropolitan DC area; capacity building within the HIV care system for women with HIV/AIDS, Ryan White CARE Act grantees, other HIV service providers, and other agencies providing services to women; information dissemination; policy development; advocacy and other strategies to improve the quality of life for women living with HIV; evaluation of the Metro DC Collaborative model for replication; and, nationwide dissemination of information about the model to others in the field.
The Center and PROTOTYPES also expected to see an increase in the number of women enrolled in all HIV-related services in the metro DC area, enhanced linkages among service providers, and, enhanced interdisciplinary approaches to care and treatment. The Center expected that its intensive leadership nurturance work would contribute to the empowerment of women with HIV/AIDS, their activism in the HIV/AIDS policy arena and, ultimately, to creation of more women-sensitive policies.
Indeed, the hallmark of the Center's development of Collaborative activities has been to listen to the voices of women living with HIV/AIDS and build programs that respond to women's self-defined needs. The very nature of the Collaborative is to evolve and change; as Leslie R. Wolfe noted: "We wrote the proposal originally to allow ourselves flexibility to modify the activities based on what we were learning from women living with HIV. And that is the essence of the Collaborative and its success" (Center for Women Policy Studies, 1999a). "In addition, we knew that we needed to be working with women, in partnership with women, to improve participation of women in the Planning Council process," said Edna Viruell-Fuentes, "but we also knew that providers needed to be hit hard on the head" (Center for Women Policy Studies, 1999a).
The Center for Women Policy Studies, the Collaborative's lead organization, focused on developing effective strategies to bring the voices of women with HIV/AIDS to public policy forums. In order to do this, the Center conducted a variety of significant activities -- information sharing meetings, cadre building activities, information dissemination and policy advocacy, for example. The Center developed and implemented all of these activities with the active participation of women with HIV/AIDS, who were involved at every stage.
The Metro D.C. Collaborative has created a flexible model for replication by other local organizations -- that can use some or all of the Collaborative's activities. Indeed, each component of the Collaborative's work can stand alone and an organization can select those that are most feasible and relevant to women's needs in their community to build their own local programs. But again, the essential key to success is the active leadership and involvement of women with HIV/AIDS as partners with organizations' staff in assessing, defining and addressing the needs of women in the community.
According to Leslie R. Wolfe: "I knew that at some point, we would come to where we are right now -- to be able to say to women out in the rest of the world -- here is a model project, a set of strategies and activities, and our experience, that can help you do the same thing without having to reinvent the typewriter" (Center for Women Policy Studies, 1999a).
THE ELEMENTS OF THE COLLABORATIVE MODEL
The Center for Women Policy Studies' part of the Metro D.C. Collaborative for Women with HIV/AIDS was a very complex project with several interrelated elements -- the Steering Committee, qualitative research with women, the cadre of women living with HIV/AIDS, information sharing meetings, publications, advocacy training, and policy advocacy; each element contributed to the overall success of the model.
Steering Committee: To ensure that local service providers and advocates were supportive of the Collaborative, the Center--recognizing its traditional role as a national organization that had not conducted local projects -- convened a Steering Committee in its first year to bring together representatives of community groups providing care to women living with HIV. The Center asked Steering Committee members to serve as advisors who could help make connections to the community of service providers and other key players.
The Steering Committee's diverse membership included representatives of community based organizations, health departments, women with HIV, nurses, physicians, policy analysts and researchers; members represented Washington, D.C. and several counties in Maryland and Virginia, most serving communities of color. The Center expected the Steering Committee to define critical problems for their clients and communities and help foster stronger relationships and linkages among service providers by providing a forum for networking, peer to peer education, and development of interdisciplinary approaches to providing care to women.
Qualitative Research with Women: Because the Collaborative was designed to evolve over time and grow out of women's self-described needs, the Center planned to identify these needs in part by conducting qualitative research with women. The Center conducted focus groups and in-depth interviews to hear from women in the community, beginning with two focus groups with African American women in the Collaborative's first year and continuing with a focus group with Latinas and one with white women in the second year. Two primary questions guided the focus group research: "What do women with HIV know about the services available to them?" and "How would women prioritize policy issues that are most important to them?" The Center published the results of the focus groups in "We Know We're Not Alone" -- The Voices of Women Living with HIV/AIDS in the Metropolitan DC Area: A Content Analysis of Focus Groups with African American, Latina and White Women in April of 1997.
During its second year, the Center conducted a series of in-depth interviews with women to further document women's needs. Between October and December 1996, researchers trained by the Center's Research Director interviewed 10 Latinas, 16 African American women and 10 white women ranging in age from 24 to 56. The interview guide, based on the focus group findings, included questions about women's access to both medical and non-medical care, support networks, and their advocacy needs -- and women spoke volumes about their lives during these interviews. The Center published the results of the interviews in "Telling My Story" Women with HIV Speak Out About Their Lives in July of 1998.
Cadre of Women Living with HIV/AIDS:
Perhaps the Collaborative's greatest success has been its leadership nurturance activities and the resulting increased empowerment of women with HIV/AIDS , which prompted an increase in the number of women working in the policy arena. An essential element of the Center's efforts to nurture women's leadership -- the major goal of the Collaborative -- was the creation of a cadre of women who lead and support one another. The cadre had a dual purpose -to support and legitimize women with HIV in policy development and to support each other by sharing information, preventing burnout, and establishing a system where women could share the burdens as well as the joys of policy advocacy and leadership. The Collaborative's other activities information sharing meetings, the "Fighting for Our Lives" advocacy training, and the other convenings -- helped to build and support the cadre. The Collaborative used skills building and empowerment groups, leadership nurturance and policy development strategies to build this cadre of women with HIV/AIDS.
The Collaborative convened five cadre meetings between April of 1996 and May of 1997, each with a different theme and format, based on what women with HIV/AlDS said they wanted and needed. For example, the "Speak Out" on domestic violence brought more than three dozen women with HIV/AIDS together to share their experiences in a "safe space" and resulted in publication of a special issue of Woman CARE News ("Women with HIV/AIDS Speak Out", 1996). The Center also convened, three other sessions -- a sewing workshop for Latinas, a "Waiting to Exhale" session for African American women, and a similar "Waiting to Exhale" session for Latinas -- designed to bring together women of the same racial/ethnic groups to focus specifically on their unique issues. Further, every activity at which several women with HIV/AIDS were present -- every information sharing meeting, every Steering Committee meeting, every "Fighting for Our Lives" advocacy training, every convening where women were able to acquire additional advocacy s kills or nurture one another through their activism - contributed to building and strengthening the cadre.
Information Sharing Meetings: Between February of 1995 and September of 1998, the Center convened 10 information sharing meetings for women with HIV/AIDS, advocates, .and selected service providers on a range of topics that Center staff and women with HIV/AIDS who served as consultants had identified. The several information sharing meetings "for women only" Were especially important, as they created a safe space for women to discuss complex and difficult issues and to share their own lives with each other -- often for the first time. The information sharing meetings also generated plans for additional programming around issues that emerged during the meetings. Women generated ideas on ways the Collaborative could assist in building the service infrastructure for women living with HIV, based on their discussions of the lack of medical, psychosocial, financial and interpersonal supports available for women (Melchior, Huba, and Panter, 1999).
Overall, these meetings allowed women to talk about issues that they were facing in their personal lives, to explore and react to other important issues, and to learn from each other -- a key goal of the information sharing meetings. Through the information sharing meetings, the Collaborative reached over 180 women, most of whom were living with HIV/AIDS (Melchior, Huba, and Panter, 1999). Following every information sharing meeting, the Center published a report of the meeting and mailed it to service providers and a longer list of women with HIV/AIDS in the community -- thus increasing the numbers of women living with HIV reached by these convenings.
Publications: The Center for Women Policy Studies regularly publishes reports, newsletters, policy papers, research papers, issue briefs, action alerts, press releases and op-eds to bring our research findings and policy analyses on a range of issues to wide and diverse audiences. The Center used this strategy to great effect in the Collaborative by publishing the proceedings of each information sharing meeting for widespread dissemination both within the local Collaborative network and the Center's national network. In fact, publishing and disseminating these reports became one of the Collaborative's most important activities because they documented women's experiences and made the information available to a wider audience of women living with HIV who could not participate in the meetings.
The publications also had an enormous empowering effect on women who had participated in Collaborative activities. Seeing their own words in print encouraged women to believe that their words and lives and needs would not be lost but instead would influence a large audience of advocates, policy makers, and service providers.
In addition to publishing reports of the information sharing meetings, the Center published reports of its research findings as well as guides containing information on women's health for women living with HIV/AIDS. The Center published a total of 31 reports from the Collaborative's work, including eight which also are available in Spanish (see Appendix).
To provide current information for women living with HIV/AIDS, the Center produced a quarterly newsletter, WomanCARE News, that included announcements of upcoming events in the community, medical updates, information on local and federal policies that have an impact on women with HIV/AIDS, and lists of resources. The Center published 10 issues of WomanCARE News, most of which were bilingual in English and Spanish. The final issue, dated December 1999, is included as an insert in the Fall/Winter 1999 issue of the Center's quarterly newsletter, Affiliates Quarterly Report, which the Center mails to its entire database of more than 10,000 colleagues nationwide.
The Center disseminated the Collaborative publications to women living with HIV/AIDS, Ryan White CARE Act grantees, Ryan White CARE Act Planning Council members, local AIDS service providers, women's health advocates and providers, federal, state, and local government leaders, health departments, civil rights and women's advocacy organizations, professional associations, and other coalition groups.
"Fighting for Our Lives" Advocacy Training for Women Living With HIV/AIDS: The centerpiece of the Collaborative's work has been the annual "Fighting for Our Lives" advocacy training, which the Center launched in the Collaborative's third year and continued for its two final years. As Leslie R. Wolfe noted: "'Fighting for Our Lives' is the centerpiece because, although it is only two days, its effects last forever" (Center for Women Policy Studies, 1999a). Each year, "Fighting for Our Lives" grew both in the number of women participants and the range of topics addressed.
"Fighting for Our Lives" sought to empower women with information, support and resources so that they could advocate for their own needs and the needs of other women with HIV and become more involved in the HIV/AIDS policy arena. "Fighting for Our Lives" nurtured the leadership skills of women with HIV/AIDS and encouraged women to increase their participation in policy meetings and forums where critical decisions about AIDS-related programming and funding are made. Finally, "Fighting for Our Lives" created a safe space for women with HIV/AIDS to come together to share their lives and strengthen their advocacy skills.
Putting on a production of the magnitude of "Fighting for Our Lives" presented a multitude of challenges, requiring the Center to draw on all its resources and contacts in the community to recruit women to participate and involve a large number of women living with HIV in every aspect of the planning and implementation of the program. "Fighting for Our Lives" also required an enormous amount of Center staff time and institutional support, both financial and infrastructure support. Indeed, the Center spent a substantial amount of money to finance "Fighting for Our Lives" -- a potential barrier to replication for organizations that do not have the benefit of federal funding. While "Fighting for Our Lives" was one of the Collaborative's most resource-intensive activities, it also was one of its greatest successes -- and will likely be remembered in the community as one of the Center's major contributions.
More than 50 women participated in "Fighting for Our Lives" each year, including 64 in 1997, 58 in 1998 and 74 in 1999. While "Fighting for Our Lives" attracted a diverse group of women, it did not reach all women in the community. The vast majority of women participating were African American, with smaller numbers of Latinas and white women. Regrettably, the Center failed to attract Asian American and Native American women to participate. The Center did succeed in bringing women from urban, suburban and rural communities in Maryland, Virginia, and the District of Columbia.
Policy Advocacy: The Center also applied its traditionally effective convening strategy to bring together women living with HIV and policy makers to discuss specific policy issues. The Center sponsored issue-specific working groups of women living with HIV, service providers and advocates. The two working groups -- on Medicaid and life planning issues -- met for over a year to think critically about policies affecting women living with HIV and the appropriate response for the Collaborative. In addition, Center staff and consultants became actively involved in the Ryan White CARE Act Planning Council and in several other coalitions.
THE METRO DC COLLABORATIVE FOR WOMEN LIVING WITH HIV/AIDS: TELLING THE STORY
While the previous section of this report describes the elements of the Collaborative model, how the Center wove these elements together to create a seamless web of women's activism, policy advocacy, and research presents a rich and complex story. The description that follows of this process is essential for the model's replication.
The process of building the Collaborative involved five years of trial and error in order to produce a model that would address the needs of women in the community. Because the Collaborative is a demonstration project, others attempting to replicate the model will benefit from the lessons the Center learned over the Collaborative's five years. According to Leslie R. Wolfe: "I think we really have developed some good hindsight and that is what doing a demonstration is about. You learn from your successes and failures" (Center for Women Policy Studies, 1999a).
Women living with HIV were the Collaborative staff's greatest teachers and advisors and their needs determined the Collaborative's activities. With each Collaborative activity, the staff learned ways to improve the work and better respond to the needs of women in the community. As Leslie R. Wolfe states: "This is, for me, one of the most important messages for our evaluation -- that you learn new lessons with each event. You learn what you have done right and what you have done wrong, and then you find ways to change. We wrote the proposal originally to allow ourselves flexibility to modify the activities based on what we were learning from women living with HIV. And that is an important piece of what this project does" (Center for Women Policy Studies, 1999a). As a result of this process, the Collaborative accomplished many of its goals and provided needed information about what women with HIV need from their communities to live healthy and productive lives.
BRINGING THE COMMUNITY TOGETHER
The Steering Committee: The Collaborative's first step was to bring members of the community together to work with the staff to plan the Collaborative. In April of 1995, Collaborative staff approached key activists and providers in the Washington area to solicit their participation as members of the Steering Committee. In the first year, however, the Collaborative found it difficult to attract some community based organizations to join the Steering Committee because many were unaware of the Collaborative and did not understand its purpose; this translated into limited participation by certain key community based organizations. Thus, while the Steering Committee at this point was very large, it was dominated by service providers. To bring in community based organizations, whose participation was essential to dealing with the epidemic's effects on women in the community, the Collaborative conducted a series of informal briefings for organizations to increase their understanding of the Collaborative and its purp ose.
Steering Committee meetings were extremely useful in the early months of the Collaborative as they helped identify issues that needed to be addressed and gaps in services for women. One of the Collaborative's first information sharing meetings, on case management, in large part grew out of discussions at Steering Committee meetings. According to Edna Viruell-Fuentes: "We had Steering Committee meetings and it was evident that case management was a serious problem, that women were not getting appropriate case management" (Center for Women Policy Studies, 1999a). Later, the Center organized the Collaborative's first roundtable, designed to bring together women living with HIV and case managers as equals, to discuss women's concerns and develop solutions.
By the second and third years of the Collaborative, participation in the Steering Committee had fallen: "We called a few meetings and it ended up being like every other Steering Committee, where participation dwindled and left a core group of people who are committed to the work -- primarily women living with HIV/AIDS," according to Belinda Rochelle (Center for Women Policy Studies, 1999a). This active participation of women with HIV in the Steering Committee was one of the first steps to building the Collaborative's cadre of women living with HIV/AIDS.
Realizing the difficulty of remaining connected with Steering Committee members and their organizations, the Center decided to produce a newsletter that would be geared toward women with HIV/AIDS in the community and would also serve to keep community based organizations abreast of the Collaborative's activities. In the Collaborative's second year, therefore, the Center published the first issue of Woman CARE News, which became a quarterly newsletter. The production of this newsletter also marked the beginning of a shift away from reliance on the Steering Committee and toward an increasing emphasis on building leadership among women living with HIV/AIDS.
Community Based Organizations: The Collaborative made strong use of existing networks in the community and relied upon community based organizations to recruit and involve women with HIV/AIDS in various Collaborative activities. For example, the Women's Collective, a women's group that held coffee houses in the city for women with HIV/AIDS, became an important resource for recruiting women into the cadre and a significant Collaborative partner and consultant to the Center. Women at La Clinica del Pueblo made similar contributions to the Collaborative by sharing information with Latinas living with HIV/AIDS who attended support groups and received services at La Clinica. As policy issues came to the forefront, the Center looked both to its consultants and to community based organizations for guidance on how these issues affected women in the community and the appropriate response for the Collaborative.
Women Living with HIV as Consultants: From the beginning, the Center believed that women living with HIV should be closely involved with the staff of the Collaborative, fully integrated into the operations of the project, and compensated for their work and expertise. Therefore, during the Collaborative's first year, the Center engaged three women living with HIV as consultants; all three had strong ties to the community. This was one of the Collaborative's most important steps to provide additional legitimacy to the Collaborative's work in the community and to recruit other women living with HIV to participate.
The consultants worked closely with the staff of the Center and with the Steering Committee to develop the Collaborative's activities, to review materials for their appropriateness, and to select facilitators and presenters for Collaborative meetings. Having women living with HIV as consultants remained a central component of the Center's work and a number of women served in this capacity over the five years of the Collaborative, often taking on a leadership role for a specific event; for example, one key consultant served as co-facilitator for the information sharing meetings in Maryland and Virginia.
LISTENING TO WOMEN'S VOICES: THE QUALITATIVE RESEARCH
The Collaborative spent the first two years hearing from women about their needs; as Belinda Rochelle states: "I think initially one of the best things we did in the first two years of this project is really focus on documenting what women were saying in our community" (Center for Women Policy Studies, 1999a). The Center conducted both focus groups and in-depth interviews to learn from women in the community and then to shape appropriate Collaborative strategies to address the key concerns women described.
Focus Groups: The focus groups presented the first of many challenges to the Center's efforts to bring together a diverse group of women to form the cadre of women living with HIV/AIDS. The process of recruiting women to participate in the focus groups was in itself revealing and served as an important lesson for the Collaborative.
For example, African American women responded to an open invitation and also invited other women to participate in focus groups; thus, the recruitment process itself tapped into women's existing networks. On the other hand, an open invitation to Latinas and white women was not a successful strategy. Instead, we recruited Latinas and white women through case managers at the institutions where women received care, including health departments, AIDS service organizations, community based organizations and hospitals (Center for Women Policy Studies, 1997a).
The need to use these different strategies showed us that women's networks varied somewhat based on both race/ethnicity and class; further, while all women experience isolation, they do so in different ways. For example, African American women with HIV were building strong support networks which played a vital role in both their access to care and their involvement in advocacy activities. Latinas, on the other hand, appeared to be the most isolated women with HIV; their isolation and fear about HIV compounded their already existing isolation both from other women with HIV and from needed services -- a result, in large part of their status as immigrants and/or the fact that they were monolingual in Spanish. White women's isolation appeared to differ both from African American women's and Latinas'; more white women seek care from private physicians, for example, and some are even more isolated within their communities (Center for Women Policy Studies, 1997a).
This difficulty in recruiting Latinas and white women meant that focus groups with women from these groups took longer to organize. Rather than conducting these focus groups in the Collaborative's first year, therefore, the Center conducted the focus groups with Latinas and white women in the second year. And the Center learned an important lesson -- that alternative strategies must be developed to reach Latinas and white women living with HIV; thus, the Center reshaped the Collaborative's overall recruitment strategies.
The focus groups identified women's needs in three key areas: access to medical care; access to other, non-medical services; and advocacy and policy. As a result of the focus groups, the Collaborative found that many of the barriers to care were grounded in the patient-provider relationship. Women said that their relationships with their providers were less than desirable because providers often displayed negative attitudes, lacked knowledge of HIV in women, and were unaware of the additional barriers women face to gaining access to care -- such as rack of transportation, long waiting times at providers' offices, and lack of Spanish speaking providers (Center for Women Policy Studies, 1997a).
During the focus groups, women discussed several issues that later became significant areas of Collaborative emphasis. For example, women identified case managers as providers of much needed information, referrals to services, and support. And women recognized that their rapport with their case managers was a key element in their ability to obtain the services they needed. As one African American woman said: "I have a case manager and having access to a person who provides those services gives me access to other people that provide other services, just like that umbrella thing" (Center for Women Policy Studies, 1997a). Women described both favorable and unfavorable relationships with case managers, noting that they could either be the major factor in ensuring women's access to care, as women's advocates, or they could be the major barrier to care when they act as gatekeepers of resources and information, making decisions for women rather than with them (Center for Women Policy Studies, 1997a).
Likewise, women identified housing as a major issue -- and it soon became a significant issue for the Collaborative. Focus group participants identified the need for affordable housing, whether private or public, and also reported that women usually cannot find suitable housing that recognizes the complexities of their lives. In fact, women cited the requirements to qualify for housing as a major barrier. As an African American woman noted: "They now want you to have a certain T-cell count in order to get in there, especially if you're a woman. Or you've got to be walking dead as far as their housing is concerned" (Center for Women Policy Studies, 1997a).
While the lessons learned from the focus groups became the launching pad for the Collaborative's policy work, the focus group findings also gave credence to the need for women's s increased involvement in advocacy and served as a building block for formation of the cadre of women living with HIV. Most women expressed a sense of frustration with the policy making process, stating that their expertise is devalued, their recommendations are ignored, and they are disrespected by policy making bodies. In fact, a white woman remarked: "It's hard to deal with ...the decision makers. I have gone to two Planning Council meetings and I'll die before I go to another one. These people are so rude, so condescending and patronizing." Another woman added: "This is the Ryan White Planning Council for HIV/AIDS services, and the reality is to them we are 'those people"' (Center for Women Policy Studies, 1997a).
Though women felt the frustrations of working with policy makers, they concluded that they had to be a part of changing the system in their favor. One white woman said: "Believe you me, unless we get out there and really fight this thing and hold hands and stick together it won't get done. Because they could care less. You'll find a handful of people -- they work with us and really do care. If you have a good doctor, you're really fortunate, but nobody can get these laws changed but us" (Center for Women Policy Studies, 1997a).
Some focus group participants already were engaged in a number of activities as advocates for women -- creating organizations, writing articles for newsletters, participating on local boards, and volunteering for local AIDS organizations, for example. Despite some women's involvement in advocacy and policy making, however, the Center heard from women that the barriers to participation needed to be torn down and that there were women willing to do what it takes to change the system -- if they had the training and skills they needed to be effective advocates.
As the Collaborative continued, women's voices from the focus groups continued to resonate in the Center's policy advocacy activities, which aimed to enable women to become active in local policy activities to advocate for their own needs and the needs of other women living with HIV/AIDS. The Center developed skills building and leadership nurturance activities to achieve this goal.
Indeed, focus group participants further justified the Collaborative's plan to create a cadre of women living with HIV/AIDS to support one another and work on policy issues. Women remarked on the intense sense of isolation they felt living with the disease; an African American woman remarked: "What I'm here for is just looking for core support and for whatever I can do to help the group, help myself, mentally, emotionally, or anyone else" (Center for Women Policy Studies, 1997a). For many women, the focus group was the first time they had ever attended a group session with women living with HIV -- so the focus groups not only provided information to the Collaborative, they also helped to build relationships among women in the community. In fact, the focus groups provided many women with a forum they had never had before, where they could learn from each other about how to gain access to the services they need.
Given the powerful information provided by women in the focus groups, the Center wanted to be sure that policy makers could learn from the research. The Collaborative staff presented the focus group findings at a local Ryan White CARE Act Title I Women's Caucus RFP planning meeting, for example. And the Center published the findings of the research (Center for Women Policy Studies, 1997a) and disseminated the report to the Collaborative's extensive network, both locally and nationally. In addition, the Center brought the findings of the focus groups to a group of key service providers by convening a policy roundtable for providers who serve Latinas with HIV.
Policy Roundtable for Service Providers Working With Latinas: This roundtable brought together representatives from six agencies -- La Clinica del Pueblo, Mary's Center for Maternal and Child Health, Washington Free Clinic, Howard University Hospital, SALUD, Inc. and Whitman Walker Clinic -- to talk about barriers providers face in their efforts to serve Latinas living with HIV/AIDS (Center for Women Policy Studies, 1996a).
During the roundtable, participants introduced themselves, highlighted their work and then discussed the preliminary findings from the Collaborative's focus group with Latinas living with HIV. The focus group data gave roundtable participants a sense of Latinas' self-defined needs -- for medical care, non-medical care, and advocacy and policy (Center for Women Policy Studies, 1996a). This model -- using qualitative research data and analysis -- allowed the Collaborative to accurately frame women's self defined needs, their voices and stories, for service providers and policy makers alike.
Roundtable participants discussed key barriers to serving Latinas and identified their own information and technical assistance needs. They also made policy recommendations to improve HIV care for Latinas in the metropolitan DC area. More specifically, roundtable participants suggested that agencies working with Latinas with HIV come together to promote public policies to benefit Latinas. They also proposed creation of "safe places" -- for providers -- where they could freely discuss issues related to serving Latinas with HIV. Finally, participants felt that service providers should see themselves as advocates for programs and policies that benefit Latinas and for strategies to generate community support for these programs (Center for Women Policy Studies, 1996a).
The roundtable's success is demonstrated both by the relevant policy recommendations it generated and by the way it opened the lines of communication between Latinas and their service providers. As one provider noted: "Most programs target adolescents and adult males...we need more support groups and more prevention programs for adult women" (Center for Women Policy Studies, 1996a). Participants recommended that local and federal financial resources be earmarked for Latinas -- to invest in services, provide bilingual and multicultural health care and service providers, generate culturally appropriate educational materials, and support HIV prevention programs. Participants also recommended an investment in research on Latinas -- to understand and respond to the needs of Latinas with HIV at both the local and national levels (Center for Women Policy Studies, 1996a).
In-depth Interviews: By the time the in-depth interviews took place, the Center had learned some important lessons from the focus groups and the first information sharing meeting about effective ways to recruit women for participation and had made connections to community based organizations that worked with women living with HIV. The Collaborative staff identified women to be interviewed through case managers, outreach workers, and support group leaders; therefore, the women interviewed were already in some way. connected to other women with HIV and/or health and social services providers. Many of the women interviewed had some connection to the Collaborative, having participated in other Collaborative-sponsored activities. There was a special benefit to interviewing women who already had some connection to the Collaborative; their prior association also meant that the women trusted the Collaborative staff, which was essential for this type of research.
Center staff also knew that questions delving so deeply into women's lives could not be asked unless interviewers were prepared to offer women emotional support to face difficult issues that might arise. Thus, the Center selected interviewers who also could serve as counselors and provide information and referrals to needed services to the women they were interviewing. In addition, the Center prepared a packet of information for each interviewee that described resources in the area and included copies of the Collaborative newsletter, WomanCARE News. Finally, the Center's Research Director conducted an in-depth training of all interviewers as part of their preparation.
BUILDING A NETWORK OF WOMEN LIVING WITH HIV: THE CADRE
Cadre Building: The Center envisioned the cadre as a group of women charged with policy action as their central activity; but, as the cadre emerged, it became clear that the essential first step was to create a sisterhood and social support group. Again, we learned from women with HIV/AIDS to take time for this first step before we -- and they -- could create a "policy attack team." The women of the cadre thus built a cohesive unit and defined their own policy advocacy needs. For example, the cadre suggested that the Center conduct an intensive advocacy training program; thus, "Fighting for Our Lives" was born (Center for Women Policy Studies, 1999a).
The cadre began meeting during the Collaborative's second year as a separate group independent of the Steering Committee. The cadre's primary role was to provide leadership and guidance to the project by identifying ways in which the Collaborative could be supportive of the advocacy activities of women living with HIV/AIDS. Cadre members served as leaders in planning and organizing the "Fighting for Our Lives" advocacy training; they identified issues for information sharing meetings and policy roundtables for women; they attended Planning Council meetings; and they identified strategies for bringing other women living with HIV/AIDS into the policy making process. Because the women of the cadre were providing the Collaborative with essential information and assistance, the Center believed that they should be compensated for their work; therefore, the Center established a policy that cadre members would be paid a consulting fee for their participation in all meetings.
At cadre meetings and planning sessions, women discussed their own needs as well as the range of issues facing women in the metropolitan D.C. area; at the same time, they built relationships and trust as a group. Though one of the Collaborative's central goals was to build relationships among women of the cadre, the ultimate goal of all of the Collaborative's activities was to empower women to become advocates for themselves and their communities. Leslie R. Wolfe noted that: "There are ways to build sisterhood and common bonds. And then at some point, you have to recognize that 'sisterhood' is not required to be an advocate, to find ways to take care of myself and my family, and to serve the women in my community" (Center for Women Policy Studies, 1999a).
Involving a diverse group of women also was an essential Collaborative goal, which often required the Center to conduct separate and unique activities that would appeal to African American women or to Latinas, for instance. Again, the Collaborative tapped the resources of organizations in the community and again formed significant community partnerships. For example, La Clinica del Pueblo and Family Place, two organizations serving Latinas in the city, helped the Collaborative reach Latinas, through their support group for Latinas living with HIV. This support group became the primary link between Latinas and the Collaborative and the Center's Research Director, Edna Viruell-Fuentes, became intimately involved with the support group, eventually becoming one of its leaders.
The Collaborative relied heavily on existing networks in the community, and tapping these networks became a cornerstone of the Collaborative's recruitment process for ail cadre building activities and the primary means of recruiting women to participate in "Fighting for Our Lives." Once in place, this process became an advocacy activity for women in the cadre -- as they took charge of recruiting other women to participate in the Collaborative's activities.
Throughout the Collaborative's existence, the Center employed multiple strategies to reach diverse groups of women -- tapping networks to which the Center had access, recruiting women through their case managers, and involving women through their participation in the focus groups. Recruiting women was challenging largely because of the staff's desire to reach every woman living with HIV in the area -- which obviously was not feasible for a number of reasons in addition to limited resources. The staff of the Collaborative was continuously concerned that they were only reaching women who were already connected to support networks. Edna Viruell-Fuentes remarked: "Not all women were connected to a network of women. So it was important to have multiple strategies of getting the information out because for some women, their only point of contact at that point in time might be their case manager, while other women have had the opportunity to develop networks with each other -- for them, word of mouth was very import ant" (Center for Women Policy Studies, 1999a).
In addition to passing information through existing networks of women and through their case managers, the Collaborative staff devised more creative methods to reach women whom many considered unreachable. Leslie R. Wolfe found this to be a real challenge, but one in which the Collaborative realized some success: "I think we would be unreasonable to think we could reach every woman living with HIV. For example, a lot of women who are living in isolation do not want to be connected. And there are women who are living in isolation in rural communities who do not want to get anything in the mail because the postmistress will see it and perhaps tell others. Knowing all this, we have created some effective strategies for reaching women other groups think are unreachable" (Center for Women Policy Studies, 1999a). For example, to reach women in rural Maryland during the second and third years of "Fighting for Our Lives," the Collaborative staff and consultants made special provisions for women traveling long distanc es, such as overnight accommodations to enable the women to attend events on consecutive days and private door to door transportation from rural areas, where public transportation does not exist.
To reach women who were not being reached by conventional methods and by other HIV/AIDS organizations also required the Collaborative to host events in places that were accessible and to provide services and transportation to ensure their participation: "We reached out to women who were not connected, including women in Northern Virginia, and in rural Montgomery County, for example. And that created a link. As a woman becomes connected to a support group somewhere, then she is the one who becomes the centerpiece of reaching other isolated women; it felt like some of this happened. But you know we have not reached every woman living with HIV in this region," said Leslie R. Wolfe (Center for Women Policy Studies, 1999a). Belinda Rochelle also described the limitations of outreach: "There are a lot of women out there who were very isolated and not connected to support groups. And so, it's harder to reach them. And if you connect your work to one person, you are basically limiting yourself to that person's networ k. And so unless you can bring more and more people into the process, you will not have everybody" (Center for Women Policy Studies, 1999a).
The Cadre Building Strategy: The Center adopted a two part strategy to build the cadre. One cadre consisted largely of African American women who were already linked to support groups and to other women living with HIV and another cadre consisted mostly of Latinas who were not already linked to other women living with HIV. Drawing on the lessons learned from the focus group research in the first and second years of the project, the Collaborative staff knew that it would have to reach out to these communities differently and that these communities had different survival needs. For example, the majority of Latinas involved with the Collaborative during the early years were monolingual in Spanish, which created barriers to dealing with the disease and to linking with monolingual English speaking women.
The Latina support group of La Clinica del Pueblo and Family Place was newly established when the Collaborative became involved with it. The newness of the group presented challenges to participation in the Collaborative, as the women in the support group had just come to know each other and to know other women with H IV, so they had not yet congealed as a group; this made it more difficult to bring them together with other women during the early days of the Collaborative. It was clear early on, therefore, that two cadres would have to be formed at the outset and that bringing the two groups together would not be productive until each had attained a similar level of activity and trust, according to Edna Viruell-Fuentes: "We knew we had to back off from expecting that all women would 'get along immediately' -- without ever having to work with each other, without having had the benefit of building relationships. This is the reason we developed this parallel strategy for cadre building" (Center for Women Policy Studies, 1999a).
CONVENING WOMEN LIVING WITH HIV: INFORMATION SHARING MEETINGS
Building an Atmosphere for Women's Participation: The Center was determined that the Collaborative would be an example for other organizations of what must be in place to ensure that women can participate in activities in a meaningful way. This means, at minimum, addressing women's tangible needs -- for licensed child care, decent meals for both women and their children, language interpreters, and transportation that meets women's safety concerns; the Center took the necessary steps to ensure that the Collaborative could meet these needs.
Indeed, the Collaborative's meetings set the standard for meetings in the city, because women who have participated in Collaborative activities now expect these services at all the meetings they attend. Belinda Rochelle reflects: "I'm sure people are upset because we have created this expectation that you must have child care, you must help with transportation, you've got to do this for women who participate" (Center for Women Policy Studies, 1999a).
The Collaborative also ensured that women felt that they were in a safe space, which meant creating a comfortable and congenial setting with presenters who were well versed in the appropriate topics and sensitive to working with women living with HIV/AIDS. And women were not videotaped or quoted by name, as the Center adhered to a high confidentiality standard in all Collaborative activities and in publications. As Edna Viruell-Fuentes noted, "the issue of creating a safe place was very important to us" (Center for Women Policy Studies, 1999a).
Focus group participants again guided the Collaborative's work because they defined the lack of information as a powerful barrier: "I still feel that I am clueless about a lot of stuff that is going on around here...I have a lot of questions, and it seems like a lot of information is not coming back there," said one woman. And another woman explained that: "A lot of stuff is not being circulated. You don't know about it unless you knock people in the head to get information. A lot of times you can't get it" (Center for Women Policy Studies, 1997a). To respond, the Center looked to its own history and expertise as a convener and sought to build a mechanism for information sharing that would fit the Collaborative's mission (see Center for Women Policy Studies, 1997b).
Incorporating the Center's Convening Strategy: The Center has a long tradition of bringing together creative thinkers and experts to address cutting edge issues and trends by sponsoring seminars, symposia, conferences, and think tanks (Center for Women Policy Studies, 1997b). The Collaborative resolved that using this convening strategy would be the ideal way to bring women together. But creating a forum in which information could be shared among women was no easy task. According to Belinda Rochelle: "I think that what we underestimated was the level of work involved in it. It wasn't just getting together a list of people and inviting them and making sure the food was there. We had to do our homework to invite the right people. We knew what the policy issues were. We ended up going to 20 million meetings, both during the workday and after the workday. Because, when women were talking about what they needed, there was a commitment on the Center's part to follow it through. And so you could find yourself workin g on one issue for an entire year" (Center for Women Policy Studies, 1999a). Edna Viruell-Fuentes agreed, and noted: "If you think about it, there are organizations that work on any one of these issues for a lifetime, but we tried to do them all in five years" (Center for Women Policy Studies, 1999a).
The Collaborative committed substantial effort to building each information sharing meeting to ensure that each meeting would bring information to women on topics they had identified and also would enable the Center to learn from women living with HIV/AIDS, document their self-defined needs and translate them into policy relevant terms, and create a safe place for women. These were ambitious goals that involved much planning and much trial and error over the course of the Collaborative. The reports produced after the meetings and disseminated to a wide network are testimony to the success of the information sharing meeting strategy (see Appendix)
The information sharing meetings were an integral part of building the cadre because they brought women together, alleviating some of their isolation. As Belinda Rochelle noted: "At every meeting we always had several women who had never, ever met another woman with HIV/AIDS. I think that this is one of the most important things that could have happened" (Center for Women Policy Studies, 1999a). The information sharing meetings also offered an opportunity to extend the cadre's reach to women living outside of the District of Columbia, in Maryland and Virginia (see Center for Women Policy Studies, 1999b; 1998b).
Learning Lessons From Our Mistakes: In the end, the information sharing meetings were defined by women's experiences and were a model for creating woman-centered activities, in large part because Center staff and consultants were willing to take risks, accept a trial and error strategy, and -- most important -- learn from our mistakes and take corrective action.
Indeed, the Collaborative made several mistakes in the beginning. For example, the staff relied too heavily on physicians and medical professionals as experts during the first information sharing meetings; this symbolically suggested to women with HIV/AIDS that the Collaborative did not view them as holders of knowledge. Based on an in-house evaluation that included having the consultants debrief with Collaborative staff, by the second year the Collaborative staff had implemented changes that ensured that Collaborative activities would value and validate women's experiences and expertise. According to Leslie R. Wolfe: "You have to be able to admit your errors -- and a lot of people who do HIV work cannot admit that they don't know what they are doing or that they have done something really, really wrong" (Center for Women Policy Studies, 1999a).
After each Collaborative event, therefore, the staff conducted an in-house debriefing to evaluate the meeting's value and success . The Collaborative staff realized that there could be a disconnect between how the staff viewed the meetings and what women took from the meetings. According to Leslie R. Wolfe: "We did the in-house evaluation because the staff could easily have a feeling that a meeting had been educational and useful for women with HIV, but for women it could have been a total disaster, because of how the issues strike at their hearts as compared to how a physician or 'expert' may have presented data" (Center for Women Policy Studies, 1999a).
Among the most important lessons the Center learned from its mistakes was the lesson that speakers and facilitators must be carefully screened: "You have to really talk to your presenters and really see where they are coming from. You just cannot assume that because they have these letters by their name that they know everything about the subject. You have to have women with HIV involved in the planning," as Belinda Rochelle noted (Center for Women Policy Studies, 1999a). Instead, the Collaborative staff understood the importance of the expertise that women with HIV/AIDS could bring to the Collaborative as well as their perspectives on the effectiveness of various presentation formats and the extent to which speakers were sensitive to women's needs and feelings.
After making mistakes, Collaborative staff members were even more aware of the constant need to listen to women, and of the importance of having the flexibility that the Center had originally built into the Collaborative's design. This flexibility meant that the Collaborative's themes and activities grew organically out of women's experiences and voices. Again, the staff needed ongoing self-evaluation to select topics and organize appropriate activities for the Collaborative. According to Belinda Rochelle: "The goal was not to do five years of information sharing. It was a model project. We wanted to see what would and wouldn't work, what women needed, and that sort of thing. So, our information sharing meetings had to evolve" (Center for Women Policy Studies, 1999a).
At the same time that the Collaborative staff learned important lessons from their mistakes, they also learned from their successes. For example, through the focus groups the staff learned that multiple strategies were necessary to recruit women and locate potential facilitators. For the information sharing meetings, therefore, Collaborative staff contacted support groups, conducted individual outreach to women, and also relied upon case managers (Center for Women Policy Studies, 1999a). Further, Collaborative staff learned that more women participated in information sharing meetings after a staff member or consultant called them on the phone; receiving a notice in the mail was not enough. The fact that the Center provided child care and transportation and paid consulting fees also encouraged women to become involved and attend Collaborative events. These strategies have proven time and again to be essential to ensuring the active participation of women living with HIV/AIDS in a variety of activities.
THE INFORMATION SHARING MEETINGS
Regional Epidemiological Information: On February 9, 1995 the Collaborative conducted a meeting to review regional epidemiological data on women and HIV/AIDS. Of the 26 attendees, 24 were women -- most of whom were living with HIV/AIDS (Melchior, Huba, and Panter, 1999). Speakers from local health departments in Prince George's County and Montgomery County, Maryland and from Alexandria, Virginia joined a representative of the DC Agency for HIV/AIDS to present data on: general medical and gynecological manifestations of HIV in women; primary care and public health guidelines; sexually transmitted diseases (STDs); patients' rights; changes in the Centers for Disease Control and Prevention (CDC) AIDS case definition; and healthy eating for people living with HIV.
This meeting used the Collaborative's original format -- bringing together physicians and other health professionals with women living with HIV. But it did not prove to be a successful strategy, as many women felt that the physicians and other "experts" were oblivious to the impact of their presentations on the women present -- who were, after all, the living embodiments of their data about HIV/AIDS and fearful for their own health. Instead, women living with HIV/AIDS asked for woman-centered and woman-sensitive formats and presenters as well as the opportunity to speak and share their own experiences, as experts.
Life Planning: Women with HIV had been decrying the lack of woman-focused information on permanency planning, including standby guardianship, joint guardianship, custody, and kinship care, since the Collaborative's first year. While policy makers and male-focused AIDS organizations were consumed with planning for death, women needed to plan for their own and their children's lives. According to Belinda Rochelle: "In our community, they call it permanency planning. And that's for when women die -- what is going to happen to their children? We were more interested in women living and losing custody of their children forever, not getting the support they needed, getting guardianship issues taken care of. So we changed the name -- we called it life planning. This is a perfect example of how we took what women were saying and put it in their words, and brought them together. So it came out of what was happening in the community -- the arguments around how much money was going to go towards this service" (Center fo r Women Policy Studies, 1999a).
In response, the Collaborative formed a Working Group of women living with HIV and community based organizations to begin preliminary discussions about guardianship issues, focusing on how women could plan for their children's care and other life planning issues. The Working Group proposed guardianship legislation to the D.C. City Council in May of 1995. Because Working Group members wanted to share their information with other women facing these issues, the Collaborative then convened an information sharing meeting on life planning on September 16, 1995, in partnership with the Women's Collective. Women living with HIV demanded that life planning focus on organizing financial and legal affairs and making arrangements for the current and future needs of their children. Using this definition, the meeting provided women with the information they wanted on entitlements, wills, power of attorney, child custody, foster care, and children's educational rights.
Organizing the life planning meeting revealed some important nuances about how women living with HIV in the community received information, thus transforming the ways the Collaborative communicated with women. According to Belinda Rochelle: "At that time, we had hired Pat Nalls as a consultant -- and she knew a lot of women. Before, we had always sent notices out though case managers. But one of the things that we learned really early on is that women communicate with each other. They bypass all that other stuff -- women get their information from other women. We contacted support groups and we did outreach that way. Very early on, we identified people like Pearl Edwards at Georgetown -- people who were actually doing incredible work in the community and who were respected by the women, not the other way around" (Center for Women Policy Studies, 1999a).
The meeting was a success because both its concept and substance were women-defined. This type of lesson is not always easy to repeat -- as the Collaborative learned with the planning and implementation of the next information sharing meeting -- on medical manifestations of HIV/AIDS in women.
Medical Manifestations of HIV/AIDS in Women: At this meeting, the 34 participants -- including both service providers and women with HIV -- received an update on clinical manifestations of HIV disease, early intervention and management of HIV infection, health promotion, immunology and virology, neuropsychiatric manifestations of HIV, oral manifestations of HIV, and tuberculosis. The meeting also focused on the role of client advocacy (Melchior, Huba, and Panter, 1999). The providers present included primary health care, social service and substance abuse treatment providers; and presenters included women from the Women's Collective and physicians from George Washington University Hospital.
The Collaborative staff and the Women's Collective had planned the meeting together, but its outcome was highly problematic. After the meeting, several women living with HIV/AIDS reminded the Collaborative to pay attention to the need for sensitivity in presenting materials; the heavy use of professional experts made participants feel uncomfortable and overwhelmed. In fact, many women felt as if some of the physicians were out of touch with women's lives, including their worries and their need for easy to understand materials. As a result, this meeting failed to fully address women's needs. After the meeting, the Collaborative decided to only convene meetings at which women with HIV/AIDS were equally represented as speakers, to do a better job of screening presenters in advance, and to shape how materials would be presented at all events.
What a Woman Should Know About Protease Inhibitors: The Collaborative reached more women with each convening, with 40 women (Melchior, Huba, and Panter, 1999) attending the meeting called to share initial information about protease inhibitors. The presenters discussed what medications to take and when, potential side effects, possible interactions with other drugs such as birth control pills, gynecological conditions associated with protease inhibitors, diet implications, and combination therapies. Several women with HIV, who also were members of the Women's Collective, asked the Collaborative to develop a report for women who could not be present at the information sharing meeting. As Belinda Rochelle noted: "I have always been reminded that for every woman who could be here, there are 100 women who cannot be here with us" (Center for Women Policy Studies, 1999a).
After the meeting the Center published What a Woman Should Know About Protease Inhibitors; initially published in December 1996, the Center updated and revised the report (1998) to include new information on Highly Active Anti-Retroviral Therapy (HAART), Nucleoside Analog Reverse Transcriptase Inhibitors (NRTIs) and Non-Nucleoside Analog Reverse Transcriptase Inhibitors (NNRTIs). The report provides information on gender differences, on using protease inhibitors during pregnancy, and on gynecological issues. Today, What a Woman Should Know About Protease Inhibitors remains in high demand from women and providers nationwide.
AIDS Drug Assistance Program (ADAP) for Women Living with HIV/AIDS On September 21, 1996, the Collaborative and the Women's Collective sponsored an information sharing meeting to bring women living with HIV/AIDS and service providers together to learn about the current status of the AIDS Drug Assistance Programs (ADAP) in Virginia, Maryland and the District of Columbia (Center for Women Policy Studies, 1996b). Twenty women and two men attended the meeting (Melchior, Huba, and Panter, 1999), which highlighted the need for correct information and knowledge about local ADAP programs (Center for Women Policy Studies, 1996b). For example, women were concerned about the disorganization of ADAP in the District of Columbia and expressed frustration about their experiences with it -- including difficulties in trying to gain access to ADAP and to receive answers to questions about the program (Center for Women Policy Studies, 1996b). The meeting allowed for regional issues to surface -- especially in an effort to under stand and determine next steps, such as how to apply for ADAP and manage to receive assistance.
The meeting provided participants with key information about their area's ADAP. It was important to deal with each state separately as each had different eligibility requirements, applications and means of distributing medications (National Alliance of State and Territorial AIDS Directors, as cited in Center for Women Policy Studies, 1996b). Thus, the meeting and its resulting report provided essential information on eligibility requirements, potential costs in the form of participation fees, application requirements, and contact information -- including names, addresses, and phone numbers of ADAP contacts in Maryland, the District of Columbia, Virginia and West Virginia (Center for Women Policy Studies, 1996b).
The AIDS Drug Assistance Program (ADAP): A Resource Guide for Women Living with HIV/AIDS (Center for Women Policy Studies, 1996b) gives women living with HIV/AIDS and their advocates a step by step manual showing how to apply for ADAP in their communities.
Meeting the Needs of Young Women Living with HIV/AIDS: While the Collaborative devised means to connect with many women living with HIV who had fallen through the cracks because other groups did not know how to find them, we learned some additional lessons when we attempted to convene an information sharing meeting for young women living with HIV. Young women living with HIV/AIDS have very few opportunities to come together to share their stories and very few programs specifically address their unique needs. Given young women's social isolation, the Young Women's Information Sharing Meeting was an important event. Discussion focused on services that young women and their families need -- including access to medical care, housing, psychosocial support, support from family and significant others, education and work. Participants also learned how young women can be involved in program and policy planning through local organizations and the Ryan White CARE Act Planning Council (Center for Women Policy Studies, 19 98a).
Most of the women who participated in the meeting reported that they only learned their HIV status after they became pregnant. During the meeting, young women talked about school, looking for work -- to help care for children and live independently -- and they talked about learning to cope with HIV/AIDS. As one participant said: "It's hard for us young people because we are still young. We are not over boyfriends. So how can I talk to this boy right there and tell him I'm HIV-positive? There's no way; it's hard for us to do that" (Center for Women Policy Studies, 1998a).
Young women also talked about the lack of support they received from families and friends as well as the overwhelming stigma and alienation they felt from others -- and about betrayal. "The young women today don't have any friends to talk about it with. You don't have a best friend that you call your sister. You can't talk to her about it because she's going to call [another friend] and say, 'don't say anything, but you know such and such got --' you know they don't call it AIDS or HIV, the young people, they call it -- excuse my language -- but they say: 'They got that shit.' And, they say, 'She's got that shit, so you better stay away from her.' You know, there's no support between our friends" (Center for Women Policy Studies, 1998a). Another young woman reported that a member of her support group had actually breached her confidentiality by telling her friends about her HIV status (Center for Women Policy Studies, 1998a).
Young women also said that they had not known that they were at risk for HIV, in part because the mainstream images of risk do not reflect their lives and experiences. They also reported that even though the services provided by Children's National Medical Center and NE Place were good, they still had unmet needs, including housing. Young women also were worried about getting older and being transitioned out of these youth serving agencies; they expressed the fear that they would not be able to move easily into the complicated and fragmented health care delivery system for adults (Center for Women Policy Studies, 1998a).
In addition to hearing one another's experiences and sharing their knowledge, the young women had the opportunity to meet older women with HIV/AIDS who are long term survivors. This was perhaps the most significant aspect of the meeting for young women -- as it gave them the opportunity to reflect on aging and having a future: "Sometimes I think it's better for young people to talk to old people because when the younger people get together they don't talk about it. When I used to go to two support groups, at first I'd just sit there and think, 'God, I hope she doesn't call my name; don't ask me anything because I don't know anything, I don't want to talk about anything.' I've got so many problems that I don't need to be one to share my story with somebody else. I'm just trying to get rid of my other problems" (Center for Women Policy Studies, 1998a). Another young women stated: "It gives me a lot of hope...that I can live instead of always thinking about dying" (Center for Women Policy Studies, 1998a). In add ition, young women appreciated being able to meet each other and talk out their concerns and fears. For most young women living with HIV/AIDS, this meeting was a first -- an effort to reach young women whose needs are often disregarded and bring them together for mutual support and sisterhood.
Identifying Gaps in Services for Women with HIV/AIDS Living in Maryland and Virginia: In the fourth year of the Collaborative, it became clear that much more needed to be done to reach women in Northern Virginia and rural Maryland, as few were being reached by service providers or support groups in their communities. Further, many women living in Maryland and Virginia could not attend Collaborative meetings because of lack of transportation and child care and time limitations. These women therefore essentially missed the opportunity to interact with other women living with HIV/AIDS. The Center therefore decided to hold information sharing meetings in Northern Virginia and Maryland where women with HIV/AIDS could share their experiences and needs and discuss the barriers to appropriate services and care that they face.
In June 1998, the Collaborative convened a meeting in Silver Spring, Maryland for women with HIV/AIDS who live in Maryland; 15 women from Calvert, Charles, Montgomery, Prince George's and St. Mary's counties met for three hours with Collaborative staff members, consultants, and a facilitator (Center for Women Policy Studies, 1998b).
Maryland women described their concerns about the impact of their HIV status on their children's emotional well being and the importance of being prepared emotionally to deal with their children's reactions upon learning of their HIV diagnosis. They also described the need for mental health services focused on HIV/AIDS -- including culturally sensitive, and age appropriate counseling, support groups and social settings where children can interact informally with other children who are grappling with the reality of their mothers' illness (Center for Women Policy Studies, 1998b).
Women also cited housing as a key issue. For example, women have difficulty locating safe, affordable housing -- and they reported that adequate housing services were nonexistent in Maryland; they reported obtaining HIV housing services only after eviction and threats of eviction and discussed the difficult decisions that stem from bureaucratic regulations about housing for people with HIV/AIDS (Center for Women Policy Studies, 1998b).
Virginia women expressed concern about the funding shortfalls for case management -- which led to ineffective and "out of touch" case management (Center for Women Policy Studies, 1999b). Women reported that many case managers were unaware of the type of services available to women and would not provide timely referral-services to meet women's medical and psychosocial needs. Women also wanted case managers who were not racist, avoided favoritism and provided ongoing needs assessments, counseling and referrals to urgently needed support services, such as housing (Center for Women Policy Studies, 1999b).
Maryland women also need trained and positive case managers -- who can provide vital information on services, help navigate the complicated health care and social services systems, and treat women with respect and dignity. And women described their need for consistent support from family members, friends, other women with HIV, physicians and case managers to avoid isolation and loneliness. Interestingly, women believed that the information sharing meeting itself decreased their isolation from others and from services and promoted positive interactions with other women living with HIV/AIDS (Center for Women Policy Studies, 1998b).
In September 1998, the Collaborative convened its final information sharing meeting -- in Annandale, Virginia, for 15 women with HIV/AIDS who live in Northern Virginia, including Prince William County, Manassas, Fairfax, Loudon County, Alexandria, Arlington and Falls Church (Center for Women Policy Studies, 1999b; Melchior, Huba, and Panter, 1999).
Some Virginia women described discrimination, racism, classism, prejudice and breaches of confidentiality from health care and other AIDS-related service providers -- in the form of refusals to provide treatment. Despite violations of confidentiality and discrimination, most women had told no one of the negative treatment. Instead, women feared punishment; immigrant women reported fear of deportation and backlash (Center for Women Policy Studies, 1999b).
Like women in the District of Columbia and Maryland, women in Northern Virginia also found few housing options and faced long waiting lists for housing assistance. Some described becoming homeless and overwhelmed with eligibility guidelines from agencies; and many found group homes restrictive. Immigrant women in Virginia discussed the additional barriers of language and confusion on whether they were eligible for services. Women also described a shortage of dentists willing to serve women with HIV/AIDS as well as the limited scope of dental services provided by Ryan White CARE Act funding (Center for Women Policy Studies, 1999b).
Many meeting participants had no previous knowledge of child and respite care rules and availability prior to coming to the meeting. Women reported that service providers did little to support them in their roles as caregivers, partners, and mothers and as people who need support to address their own medical and psychosocial needs; in fact, some women described feeling guilty about their depression and anxiety (Center for Women Policy Studies, 1999b).
In Virginia, workplace disclosure frightened many women; they feared being fired and facing discrimination, breaches in confidentiality and racism. Finally, women voiced the need to have more women involved in Planning Councils. On this final issue, the women definitely called for change and action -- to see more women involved in advocacy work in Northern Virginia (Center for Women Policy Studies, 1999b).
TELLING THE STORY: THE CENTER'S PUBLICATIONS AND DISSEMINATION PROGRAM
The Center's creation of reports and newsletters to document the activities of the Collaborative was the cornerstone of the Collaborative's information dissemination effort. According to Leslie R. Wolfe: "The publications grew out of woman-centered information sharing meetings, cadre building activities, and qualitative research with women -- we believe that what women say about important issues that affect their lives must be shared with a huge audience" (Center for Women Policy Studies, 1999a).
Indeed, the Center's publications grew out of the self-expressed needs of women with HIV/AIDS and reported on activities they helped to design; therefore, Collaborative staff felt sure that these reports would be useful to larger groups of women and would teach providers and policy makers about ways to better serve women. "We got the idea for the protease inhibitors guide," recalls Belinda Rochelle, "from a woman at the information sharing meeting who said, 'you guys ought to do this in writing because a lot of women couldn't come to this meeting; this is helpful'" (Center for Women Policy Studies, 1999a).
As a result, the Collaborative was able to reach far more women who needed it most. According to Leslie R. Wolfe: "The importance of the fact that information sharing meetings result in a published report cannot be overestimated; if 30 women are at the meeting, there are 300 more who could not be there. And so, they are brought to the meeting by the report" (Center for Women Policy Studies, 1999a).
But most importantly, the publications also lend credence to the voices of women living with HIV/AIDS, documenting their needs and bringing their voices to the public policy debate. As Leslie R. Wolfe states: "First, these publications document the meeting; they create a permanent record so that -- if we do not remember what happened at the case management meeting, for example -- all we have to do is refer to the report. The second thing that the publications do is to give women a weapon when they spend time with policy makers or service providers or program developers. And the third and, for me, the most important aspect of these publications is that women living with HIV who in this community had felt invisible, unheard, disrespected -- could say 'I said that; this publication reflects what I have said.' And that is a way to make their messages and their lives permanent." (Center for Women Policy Studies, 1999a).
The Center felt a tremendous commitment to making information about the Collaborative activities accessible and useful to women living with HIV/AIDS. During the first two years of the Collaborative, the Center distributed multiple copies of its publications to local community based organizations so that they could provide information to women in their neighborhoods and at places where they seek services. And WomanCARE News, the Collaborative's quarterly newsletter for women living with HIV and their advocates, provided information in a more concise format on Collaborative activities. According to Leslie R. Wolfe: "We sent WomanCARE News to everyone we could find -- we were sending stacks of them...to case managers or whoever so that they could distribute them to women who may or may not have already become involved with the Collaborative" (Center for Women Policy Studies, 1999a). Both the newsletters and reports also included resource lists for women with HIV/AIDS, complete with phone numbers.
The publications were written in easy to read, understandable language; and, to protect the privacy of women, the Center mailed them in plain wrappers. Making information more accessible also required the Center to make publications available in Spanish in order to reach the increasing number of Latinas living with HIV/AIDS in the DC area. Unfortunately, because of budget constraints, not all reports were published bilingually and, during the Collaborative's third year, the Center could no longer distribute multiple copies of all reports to all local organizations.
In addition to its various publications, the Center also disseminated Action Alerts to its database on the following topics: Title I and Title II planning processes; employment and job development specifically for women with HIV/AIDS; AZT and pregnant women; and, information on free viral load testing. And for two years in a row, the Center disseminated 100 applications to local women with HIV/AIDS for the annual rental assistance housing lottery.
The Measurement Group's evaluation of the effectiveness of the Center's various information dissemination efforts shows an overall favorable response. The Center included a short reader survey (with prepaid postage) in the fall/winter 1997 issue of Woman CARE News. Although the response rate was very low (N=17), results were very positive concerning the usefulness, relevance, and possible policy and/or programmatic impact. The evaluators also noted that the publications were empowering for women living with HIV/AIDS who participated in Collaborative activities, stating that since the active involvement of women with HIV "was documented in project publications that were disseminated to decision makers, the women could see that their opinions not only mattered, but also were being heard by individuals who could potentially change the way services were provided" (Melchior, Huba, and Panter, 1999).
THE CENTERPIECE: "FIGHTING FOR OUR LIVES" ADVOCACY TRAINING FOR WOMEN LIVING WITH HIV/AIDS
Nurturing Women's Leadership: The Collaborative began its leadership nurturance work with women living with HIV/AIDS from the very beginning -- through the Steering Committee, which changed over time and ultimately became a vehicle for cadre building. The fact that the Collaborative staff convened cadre meetings immediately prior to Steering Committee meetings, in the same meeting space, had a profound effect on the women who participated.
Having the opportunity to share their concerns in a safe space -- just among other women -- and then to go directly into the larger Steering Committee meeting empowered women to increase their participation and speak out boldly in Steering Committee meetings, as equal partners with service providers. The cadre continued to grow in strength and activism as women became more comfortable in their leadership. Ultimately, cadre women took on the planning and execution of the "Fighting for Our Lives" advocacy training.
Inventing "Fighting for Our Lives": The Center's creation of the "Fighting for Our Lives" advocacy training grew directly from discussions with women with HIV throughout the first half of the Collaborative's life: As Leslie R. Wolfe explains: "It is interesting to look at how we came to invent "Fighting for Our Lives" -- starting with the Women's Collective, which was then very small, saying 'we've got to do something new'. And also, the Latina support group was growing and was doing the first 'Waiting to Exhale' party. And then there were all the information sharing meetings happening at the same time, building towards the need to do this annual event" (Center for Women Policy Studies, 1999a).
"Fighting for Our Lives" was also a crowning achievement for the women of the cadre, for it demonstrated the growth of their leadership. By the third and final "Fighting for Our Lives" in 1999, virtually all of the planning was done by cadre members -- from selecting the speakers and designing the sessions to handling the administrative details associated with registration during the training. This was one of the most significant outcomes of the Collaborative's activities -- as women of the cadre not only assumed significant leadership roles in planning and executing a major training event but they did this work as a team. In fact, as Belinda Rochelle notes: "The cadre was not just given the task to come up with ideas and then walk out of the room. They did some of everything and they really felt ownership in this whole process. This was a strong working planning committee and it was diverse, with women from Virginia and Maryland as well as D.C. So we really did learn lessons as we went along in terms of 'Fig hting for Our Lives'" (Center for Women Policy Studies, 1999a).
While "Fighting for Our Lives" was successful in reaching African American women, Latinas, and white women, the Collaborative did not attract women of other groups to participate. The Center identified this shortcoming and disappointment, as Leslie R. Wolfe noted: "I would like to have done better outreach to Asian American women. I would like to have done more with immigrant women of different backgrounds, from Latin America, from Asia, from Africa. I would have liked to reach far more rural women, and I especially would have liked to reach more very young women" (Center for Women Policy Studies, 1999a).
The Collaborative did develop effective means for involving women living in rural areas and their participation increased in each of the three years of the "Fighting for Our Lives" training. This was very significant given the particular sense of isolation that rural women feel, living in small communities that offer few services for people with HIV, where their privacy was constantly threatened. And so, women from rural areas took special joy in coming out of the small, often confining environments of their small towns to "Fighting for Our Lives," largely because it provided a safe space in which they could feel comfortable learning about the disease and talking with other women with whom they shared similar concerns. As Edna Viruell-Fuentes commented: "The women from rural Maryland wanted the safety of being able to go somewhere else where nobody knew them and connect with other women" (Center for Women Policy Studies, 1999a).
Getting women to the trainings many miles from their rural towns added a challenge for the training's organizers and was a special challenge to the women attending because travel time was added to their already exhausting day. Learning from the women who traveled long distances in the second year how unbearable such long days were, the Center decided to provide overnight accommodations for women traveling long distances -- those who lived at least 15 miles from the meeting site; while this required additional financial resources, it made an enormous difference in comfort for the women participating.
The Two Cadres Become One: "Fighting for Our Lives" offered a unique opportunity to bring the two cadres -- African American women and Latinas -- together and meld the groups into one. But this goal proved to be more difficult to achieve than anticipated. Going into the second year of "Fighting for Our Lives," it was clear that Latinas had not been successfully incorporated into the Collaborative's cadre building activities or in the first "Fighting for Our Lives" in 1997. Improving this effort thus became a staff priority in the planning for both the second and third "Fighting for Our Lives."
To improve its track record with Latinas, the Center hired a consultant, Catalina Sol, to facilitate a Latina Affinity Group, to learn how the Collaborative could better serve Latinas. This was especially urgent, as the Collaborative was entering the planning stages for its final year as a project and wanted to ensure that Latinas' voices contributed to the Collaborative's plans.
The Affinity Group consisted of eight Latinas, most of whom were involved with the support group for Latinas at La Clinica del Pueblo and also were familiar with the Collaborative's activities from the focus groups, in-depth interviews, and information sharing meetings. Their familiarity with the Collaborative made the results of the Affinity Group's conversation a useful evaluation tool for the Collaborative.
Having listened carefully to the Affinity Group participants, the consultant made several recommendations to help the Collaborative better serve Latinas. She suggested that the Collaborative train the women of the support group to facilitate a workshop during "Fighting for Our Lives," participate in a bilingual conversation between Latinas and African American women around issues of common ground, and counsel other Latinas immediately after being diagnosed. She also recommended that the Collaborative serve Latinas who were not part of the support group by hosting a Spanish speaking conference for Latinas living with HIV that would be similar in format to "Fighting for Our Lives." This recommendation was based on one Latina's complaint about "Fighting for Our Lives" -- that Latinas were less able to participate in the workshop discussions because they were limited by the speed of the interpreter and because they felt isolated, as so few Latinas were present. The consultant also suggested that the Collaborative include more culturally appropriate workshops conducted in Spanish rather than merely interpreted into Spanish to provide a more structured opportunity for Spanish speaking women to discuss issues.
These recommendations proved to be invaluable to the planning of the final "Fighting for Our Lives" and other cadre building activities. To begin, Collaborative staff became more aggressive in seeking Latinas to serve on the planning committee for "Fighting for Our Lives."
This venture was quite successful, and Latinas served as facilitators at the final "Fighting for Our Lives," having begun their involvement through participation in the planning meetings. One Latina, for example, often came to cadre planning meetings without an interpreter, though a case manager sometimes came to translate for her. But, she soon made friends with another Latina in the cadre and they began to help one another through the meetings; this only happened because they found that this was a safe place where they were important and respected. As Belinda Rochelle notes, she "used English in a very sort of halting way, but was comfortable enough that everyone around her was going to take the time to listen to her, that what she had to say was valid and important. Her pride in her accomplishments grew and she helped put together the training and facilitated a workshop at 'Fighting for Our Lives"' (Center for Women Policy Studies, 1999a).
As a result of the Affinity Group's recommendations and the Latina cadre members' participation in planning the final "Fighting for Our Lives," it was a very different event than in the previous two years. The final "Fighting for Our Lives" featured a series of workshops conducted in Spanish and facilitated by Latinas; this meant that Latinas were not burdened by using translation equipment that served as a barrier at times to their full participation in other workshops. In addition, parts of the larger workshops were conducted in Spanish, which required non-Spanish speaking women to rely on the translation equipment. As Edna Viruell-Fuentes pointed out: "It does slow down the workshop but my sense is -- it is good. Because it really helps us. notice whatever privilege we do have and I think that is part of what we have been trying to do -- equalizing a privilege" (Center for Women Policy Studies, 1999a).
This had a remarkable effect on the relationships between the Latinas and the largely African American group of women at "Fighting for Our Lives." For the first time, the African American women were able to understand what their Latina sisters endured trying to navigate in a language that was not their own. Belinda Rochelle describes the experience: "It was incredible, because we had the other women of color putting on the translation equipment. So, they got a feeling of what that felt like. And the equipment wasn't working well, it was making all these sounds and they couldn't hear. And it really blew them out of the water how yucky this equipment was" (Center for Women Policy Studies, 1999a). Following these workshops, in which the majority -- the African American women -- were de-centered, the Latinas and African American women were one step closer to melding into one cadre of women living with HIV/AIDS.
On the final day of the 1999 "Fighting for Our Lives," the dream of melding the two cadres finally felt like a reality, largely because of the performance of "No Le Digas a Nadie/Don't Tell Anybody" by Latina participants in the training who also are part of the GALA Hispanic Theatre. The play is performed in Spanish and the actors wear masks, disguising their identities from the audience. During the group's performance at the final "Fighting for Our Lives," the translation equipment failed, and the performance had to be interpreted by one of the women who was familiar with the play; once again, the monolingual English speakers caught a glimpse of how Spanish speaking women feel every day in an English speaking world. At the end of the play, the Latina performers removed their masks -- which they rarely do. But in that setting, with other women living with HIV, they felt safe, part of the group, and so they did not need to maintain secrecy and withhold their identities.
This moment captured what the Collaborative had sought to achieve over its five years -- building a cadre of women who, while fighting for their own lives, can work together to win the fight for their sisters as well. "At the very end of the performance, you don't take off your masks," Belinda Rochelle reported. "But in this case, because they felt like they had connected so well, people were in tears. They were standing there. It was one of those moments, when they took off their masks, that said -- this is what the Collaborative is all about. And can you document that? But it showed what can happen when you just bring women together and you let them share their stories, because you can find yourself in some aspect of their story," she concluded (Center for Women Policy Studies, 1999a). At last, the Latinas showed that they finally were comfortable with their sisters in this cadre.
Just as the Collaborative worked to bring the two cadres together through the "Fighting for Our Lives" training, Center staff and consultants also were constantly trying to bring in women who had not yet been involved in the Collaborative. This meant addressing a number of issues; according to Belinda Rochelle: "The divisions among women in the community are not limited to race and class. There is the division around how HIV was transmitted; there is the division between those who have children and those who do not; between those who are in relationships and those who are not, between women who live in DC and those who live in Maryland and Virginia. And when we were talking to women, we had to pick those issues that everyone talked about. So we were very strategic on what issues we wanted to work on; we tried to pick things that could unify" (Center for Women Policy Studies, 1999a).
The "Fighting for Our Lives" workshops either provided women with information to empower them to advocate on their own behalf or provided information and training to enable them to be effective advocates in the policy arena; a few workshops did both. While the Collaborative staff envisioned "Fighting for Our Lives" as focusing on policy advocacy, women with HIV declared the importance of first dealing with psychosocial issues around their health and their families -- demonstrating that, in order to be prepared for policy advocacy, women first needed to be empowered to shape their own lives through personal advocacy. "You have to be able to get through the personal advocacy piece before you can start the policy advocacy. And wherever women end up is okay," said Leslie R. Wolfe (Center for Women Policy Studies, 1999a). For Belinda Rochelle, personal advocacy was an important part of empowering women: "We knew that if a woman got on the phone and encouraged another woman to take her medicine, that was advocacy; if she was able to find a good doctor for her children, that was advocacy. That was what mattered. And while some women were going to be planning council gurus, many weren't -- and that was okay too" (Center for Women Policy Studies, 1999a).
The agreement to offer workshops that were both explicitly policy advocacy training and those that were explicity personal advocacy proved to be just what women wanted and needed: "The safe protective environment provided a freedom that allowed us to open up, to hear and tell things that we had kept buried inside," wrote Cynthia Schweitzer. "And we opened up and let things out; all of the emotions came with them. We laughed, we let go of sorrow, anger, fear and pain; we let go of the 'bad girl' stereotype, the stigma of this disease, and found new respect and acceptance for each other -- and we gave each other the courage to love ourselves. No one could have guessed -- we thought we were going there for something called advocacy training! But, first things first, we needed to heal and strengthen before going out into the world" (Schweitzer, 1999).
During the 1998 and 1999 "Fighting for Our Lives" trainings, the workshops that increased women's knowledge of their bodies and the way HIV/AIDS operates in women's bodies were extremely popular. Nearly all the women (93 percent) attended the workshop on "Everything You Always Wanted to Know About HIV/AIDS" in 1998 and in 1999 and all participants ranked this workshop as "great" or "good" (Melchior, Huba, and Panter, 1999). Women also gave high marks to other workshops on personal advocacy and what women should expect and demand from health care providers, such as "Our Changing Bodies/Improving Self Image" (1999), "Sex, Sexuality and Sexual Choices" (1999), and "Gynecological Care" (1998) (Melchior, Huba, and Panter, 1999).
One woman said that the 1999 "Fighting for Our Lives" was "wonderful -- 'Fighting for Our Lives' provided food for the soul" (Melchior, Huba, and Panter, 1999); and another woman commented: "It was an outstanding experience. It's given me that extra push for standing up for women living with this virus here in the metropolitan area, and to take it to other places like California, Boston, etcetera" (Melchior, Huba, and Panter, 1999). Women participating in "Fighting for Our Lives" said they were better informed about how to advocate on behalf of their own needs and the needs of other women with HIV/AIDS (97 percent). Women also overwhelmingly felt that they had the information necessary to be advocates, that they were better informed about health issues for women with HIV/AIDS (100 percent) and about support systems for women with HIV/AIDS (100 percent) (Melchior, Huba, and Panter, 1999).
Just as "Fighting for Our Lives" focused on empowering women to advocate for their own needs with service providers, the trainings also provided women with skills and knowledge to enable them to become active in the policy arena. As a result of their participation in such well attended policy advocacy workshops as "The Ryan White CARE Act and the Title I Planning Council" and "Benefits and Legal Issues," most women reported that they wanted to participate in HIV-related policy meetings (88 percent). However, while 53 percent of the "Fighting for Our Lives" participants had previously attended policy meetings, women overwhelmingly felt that they did not have real access to such meetings. As one woman noted: "Unless you have knowledge, you can't access services. Even the language at Planning Council meetings is difficult. Instructors at 'Fighting for Our Lives' have been good at breaking down the language" (Melchior, Huba, and Panter, 1999). Following the 1998 "Fighting for Our Lives," most participants (90 per cent) said they intended to participate in Planning Council meetings and virtually all the women surveyed in both 1998 (100 percent) and 1999 (95 percent) planned to attend future activities such as for Our Lives" (Melchior, Huba, and Panter, 1999).
Each "Fighting for Our Lives" training was full of emotion, with women sharing parts of themselves that they 'seldom do because of the pain and stress they face daily. Rather than send women back to their homes with their spirits heavy, the Collaborative always included workshops at the end of the day that focused on renewal and prompted women to reflect on the positive aspects of their lives. In addition, each "Fighting for Our Lives" ended with an awards ceremony that honored women for their achievement.-- completing an intensive advocacy training session. This was always an emotional and uplifting event, as women praised each other and rejoiced in their shared accomplishments.
For many women, "Fighting for Our Lives" was the first time they had met other women with HIV/AIDS -- and in a safe place. For that moment in time, women's isolation was eased; one woman with HIV/AIDS -- who attended all three of the "Fighting for Our Lives" advocacy trainings -- wrote about the first training for WomanCARE News: "It was really my first chance to meet positive women from all walks of life and sit down and share our stories. It was a deeply moving experience for me --liberating, learning and spiritual... I left there a different person, with a new perspective, new courage and a new focus...This is why 'Fighting for Our Lives' training is so vital, because it gives us a time and place where we can open up, share encouragement, learn how to cope with a potentially devastating disease and rise above the status of victim to claim our true power...'Fighting for Our Lives' has had a lasting effect on the women fortunate enough to have attended because it has equipped us with the tools to advocate, i t will continue to create repercussions on AIDS policy" (Schweitzer, 1999).
Other women also described the impact of "Fighting for Our Lives": "Though we don't speak the same language, I see myself in her life story" ("Fighting for Our Lives," 1998).
And women valued the opportunity to gain new knowledge: "I learned about services that my case manager didn't know about and I have since educated my case manager about the services. The training gave me more motivation to 'do what I have to do'" ("Fighting for Our Lives," 1999).
Virtually all of the women interviewed at "Fighting for Our Lives" stated that they would recommend the training to other women because it was both informative and empowering. One woman said: "There are a lot of women who are positive and need the information. They should know there is life after HIV" (Melchior, Huba, and Panter, 1999). And another woman said that she would recommend the training because "it's empowering and provides support to be with other women who are persons with AIDS. It's refreshing that you can be with other women who are just like you". And another reflected on this renewed energy: ""Fighting for Our Lives" greatly encouraged me -- seeing many healthy sisters. Now I feel that I can get the strength to continue with work [advocacy]. My self-esteem has been boosted. Being together is important because depression can devastate" (Melchior, Huba, and Panter, 1999).
Women also were engaged enough in the "Fighting for Our Lives" experience that they offered suggestions for improving the training -- asking for more information and more training: "Wish there was more of it, and more time for questions and answers and more information" (Melchior, Huba, and Panter, 1999). Other women suggested that it would be useful to involve partners and families in the training: "I would like to see a workshop where women could involve their partners because some male partners are negative, having them educated if they have fears and questions. Sometimes it makes a difference hearing it from someone else" (Melchior, Huba, and Panter, 1999). And another participant suggested that "anyone with the virus or with a family member with the virus should participate" (Melchior, Huba, and Panter, 1999).
Most of the women participating in the 1999 "Fighting for Our Lives" said that they wanted to become actively involved in advocating for women living with HIV/AIDS in the policy arena. They mentioned various ways to help -- from doing paper work and passing out flyers to starting their own local groups and networks for women living with HIV/AIDS: "I would definitely get more involved. A lot of people don't know where to go to get services. The help is out there and I can tell people about the help especially via Ryan White. They should not suffer with this virus. More service providers must tell people about the help and I must tell them too" (Melchior, Huba, and Panter, 1999). Other women agreed: "'Fighting for Our Lives' makes me want to get more involved in everything. I want to get more political, for example, to change the social security system for us. I want to speak out about a lot of things, like housing" (Melchior, Huba, and Panter, 1999).
The first and second "Fighting for Our Lives" trainings produced an increase in cadre building, leading to creation of an empowered cadre that played a leading role in planning and implementing the final "Fighting for Our Lives." Cadre members facilitated workshops, handled registration, and took on many other tasks associated with producing the large event. In large part, the Collaborative's legacy in the community will live on through the network of women leaders that have been nurtured through the cadre and "Fighting for Our Lives".
Learning Lessons -- Assessing the Training: Each year, Collaborative staff and consultants had the opportunity to improve the event to better address women's needs -- based on several assessment methods. First and foremost, Collaborative staff and consultants discussed the event's successes and failures at great length -- with each other and with other Center leaders. This de-briefing process encourages creative thinking about strategies for improvement that can be implemented in future years. In addition, the Center decided to conduct more systematic evaluations of participants' responses to the event; therefore, the project's evaluators, The Measurement Group, and the Center's research staff conducted face to face interviews, surveyed participants, and conducted participant observations to evaluate the impact of these trainings on women's future activism and advocacy. Following the second "Fighting for Our Lives," staff of The Measurement Group conducted follow up interviews by telephone (Melchior, Huba, an d Panter, 1999).
POLICY ADVOCACY FOR INSTITUTIONAL CHANGE
From the beginning, one of the Collaborative's primary goals has been to ensure that women living with HIV/AIDS, their advocates and caregivers are included in local and national policy development, as a strategy to address access to care issues for women living with HIV/AIDS.
The Ryan White CARE Act Planning Council: Prior to creating the Collaborative, the Center conducted an evaluation of the Title I planning and funding processes in four cities -- Los Angeles, the District of Columbia, Chicago and Miami (Viruell and Wolfe, 1996). Earlier, the Center also had conducted two surveys of organizations and programs potentially serving women in the HIV epidemic (Stoll, Viruell, and Ogu, 1995). Both studies found that the needs of women with HIV were grossly overlooked. In particular, the absence of women with HIV, their advocates and their care providers from the decision making processes of Title Planning Councils and Title II consortia maintains an inappropriate response to the increasing women's HIV epidemic. Thus, despite the fact that women are being infected with HIV at an alarming rate (see Gaberman and Wolfe, 1999), women's needs are not given priority and women's programs remain seriously under funded (Viruell and Wolfe, 1996).
Women described the Title I Planning Councils as bodies that represented the "old epidemic," created on political instead of sound public health grounds. In addition, women felt that the Planning Councils perpetuate networks that have excluded women and continue to exclude women. One interviewee reflected what many others said when she noted that "the primary barrier is that it is a body dominated by men." Other characteristics of Planning Councils' membership have also served as barriers to women's involvement. For example, women mentioned that the Councils are comprised largely of service providers who are not in touch with communities of color; and even though there are women on the Council, they often do not represent women but rather represent the agencies for which they work (Viruell and Wolfe, 1996).
The Collaborative gave women the tools to become active participants in the Planning Council's policy decision making by providing the advocacy training and psychosocial supports women said they needed and by encouraging women to attend Planning Council meetings.
Wolfe (Center for Women Policy Studies, 1999a). And Edna Viruell-Fuentes noted that "when we go to the meetings, when we are at policy tables, at coalitions, having the publications gives us the research and the documentation of the Center's activities, and these tools help us to be more effective at our advocacy work" (Center for Women Policy Studies, 1999a). Pat Nails made an enormous contribution, as Belinda Rochelle said: "She is so incredible on that Planning Council. She speaks very honestly and truthfully, and it makes them all so uncomfortable and I love every minute of it" (Center for Women Policy Studies, 1999a).
In the second year of the project, HRSA finally informed the Center that its status as a Ryan White CARE Act SPNS grantee guaranteed it a seat on the Planning Council. The Center quickly seized this opportunity to be represented at the Planning Council table by a woman living with HIV and designated Collaborative consultant Pat Nalls as its representative to the Planning Council. She therefore could attend the Planning Council meetings armed with the research and advocacy materials of the Center as well as her own voice -- to shed light on women's self-defined needs.
In addition, Collaborative staff and cadre members decided to attend meetings as a support system for our representative -- believing that a lone woman's voice should be backed up by women in the audience. "We had everybody go to the Planning Council meetings because we know the worst thing is to be the one and only," commented Leslie R.
Interestingly, this door was opened for women with HIV/AIDS who represent women's issues because of the federal mandate, as Leslie R. Wolfe noted: "This happened only because HRSA required the Planning Council -- if they wanted to continue as a Planning Council -- to let us have a representative of our choice. So, the federal requirement gives us the wedge, the opening door, so that we can do massive advocacy for women at an institution that otherwise would never, ever have elected any of us, or anybody representing what we represent, to the Planning Council. That was a very special piece of the advocacy work and it also reflected the importance of federal requirements for bodies that spend federal money" (Center for Women Policy Studies, 1999a).
This door opening experience, and Pat Nalls' participation as a Planning Council member, has had an impact on women's attendance at Planning Council meetings. More women now participate, though there is still a need for even more women's voices to be heard at Council meetings. Indeed, the Center is encouraged that this is only the beginning of women's increasing involvement, as Belinda Rochelle notes: "Cynthia Schweitzer now is on the Planning Council; so, each woman is finding her place in all of this" (Center for Women Policy Studies, 1999a). And, Leslie R. Wolfe shares this optimism about the future of women's participation: "Soon there will be a lot of women on the Planning Council, representing women, and there will be a lot more women with HIV coming and sitting in the audience, cheering and asking questions. And pretty soon the Planning Council will begin to reflect the real community" (Center for Women Policy Studies, 1999a).
Women of the Collaborative were determined to make the Planning Council a more woman-friendly environment and achieved an early victory that inspired their continued advocacy. In fact, women who started attending the Planning Council meetings demanded that the Planning Council provide child care, to enable women to participate fully. Despite pleas from women for child care, however, the Planning Council had ignored their request. So, women set their sights on getting this service provided not only by asking for it, but by executing a direct action plan to achieve their goal: "We told one cadre member, a mother of five children, to bring every one of the children to the Planning Council. We paid their taxi fare and let them run around in the meeting. The kids were going nuts in the Planning Council and the next thing you know, we had child care. The Planning Council providing child care at their meetings was a major acknowledgement that women need this service," said Belinda Rochelle (Center for Women Policy S tudies, 1999a). Though women had requested child care for years, it was this activism that finally gained the attention of the Council and forced a policy change in response.
For the Center, it is a key point that the activism that grew out of the cadre's activities was on women's own terms, as women with HIV defined the leadership roles they wanted to assume, identified the skills they already had and the skills they wanted most to develop, and decided how they would put them to use. According to Leslie R. Wolfe: "The cadre building activities were designed to give women what they say they need and want to nurture their own leadership as advocates for themselves, for their colleagues, for their friends, especially in the policy arena" (Center for Women Policy Studies, 1999a).
Policy Change -- Four Examples: The Center's publications, information sharing meetings, and cadre building activities all worked together to move towards policy change. Each of these elements of the Collaborative model builds on the others and points towards advocacy, a central element of the Collaborative's work and central to women's roles in making institutional change. Because of the nature of public policy and the incremental change inherent in the process, usually it is only possible to plant the seed for change -- but on a few occasions, we have seen success in a relatively short span of time.
The Collaborative was exceptionally successful in the policy arena on issues of Medicaid, case management, women ex-offenders, and housing for women living with HIV. The Collaborative employed its usual formula in working on each of these issues -- listening to women, attending meetings around the city, convening information sharing meetings, and publishing newsletters and reports. In the process of changing the system, women's lives were changed in more ways than one -- some received the services that they needed and some also gained a new or renewed sense of empowerment as a result of working on the issues that affect their lives.
The Medicaid Policy Working Group: Access to medical care for many women lies in knowing how to navigate the Medicaid system and women living with HIV described a number of problems early in the Collaborative's life. The Center's extensive policy analysis work on Medicaid issues contributed to the Collaborative's ability to respond (see Center for Women Policy Studies, 1998d; 1997c; 1996e).
The Collaborative established a Medicaid Policy Working Group of Collaborative staff and women living with HIV/AIDS to document women's experiences in gaining access to. Medicaid services and to bring women's concerns to policy makers. On March 17, 1995, the Working Group met with the Regional Program Coordinator of the Health Care Financing Administration (HCFA) and a representative of the Washington, D.C. Medicaid Office to discuss upcoming changes in Medicaid services to women living with HIV/AIDS. Specifically, members of the Working Group discussed the potentially negative effects of these proposed changes on women's access to Medicaid. In April of 1995, the group met with the National Health Law Program and Neighborhood Legal Services to discuss local Medicaid legislative strategies. They also met with the Legislative Assistant to Congresswoman Eleanor Holmes Norton (D-DC) to discuss proposed changes in Medicaid. Finally, in June of 1995, the Working Group met with representatives of the regional office of the Health Care Financing Administration and of the District's Medicaid Office to discuss their additional involvement and input in the proposed changes in Medicaid services.
This direct interaction with government leaders allowed women to explain the difficulties of accessing Medicaid managed care and quality case management to people who could make change -- an empowering experience. Further, the Medicaid Policy Working Group identified case management as a priority policy issue with tremendous impact on women living with AIDS in the metropolitan area, thus inspiring the Collaborative to convene a case management policy roundtable in its second year.
Holding policy roundtables with both federal and local policy makers was a strong and effective advocacy tool for the Collaborative -- and it made a difference by bringing particular combinations of key people to the table. As Edna Viruell-Fuentes said: "One key activity that evolved by bringing providers, policy makers, women with HIV, Center staff and other advocates together was that national advocates were at the table. They were different types of people that had not come together and did not usually talk with each other; the energy of the conversation and the level of brainstorming that was happening was very unique" (Center for Women Policy Studies, 1999a).
The Case Management Policy Roundtable:
From the beginning of the Collaborative, in part as an outcome of the Medicaid Policy Working Group's efforts, women had identified case management as a crucial issue. The Collaborative therefore convened a Policy Roundtable on Case Management on March 12, 1996 at which more than 30 women, and case managers came together; more than half of the women in attendance were women living with HIV/AIDS (Center for Women Policy Studies, 1996c).
The purpose of the policy roundtable was to discuss the specific needs of women -- including funding and access to woman-centered case management, to make recommendations on ways to serve women, and to draft a policy brief to distribute to policy makers. The structure of the meeting gave women with HIV the opportunity to talk about issues they were facing in their personal lives and to give case managers the opportunity to hear about gaps in services. During this process, all participants realized that this was a difficult conversation to have, but that it needed to happen to improve services. As one woman stated: "A case manager can make all the difference in the world, in terms of my health and not only my emotional well being, but the emotional well being of my circle of family and friends" (Center for Women Policy Studies, 1996c).
In fact, the roundtable itself demonstrated the urgency of women's need for support from case managers. For example, one woman disclosed her immediate need for help -- and the roundtable participants responded, as Edna Viruell-Fuentes noted: "A woman had a very important need right there and then. How could we possibly have a case management roundtable and send her off to find a case manager? So, we had to figure out what to do immediately. And one of the case managers moved right in and tried to figure it out. And so, what we were doing was tapping into the very need that the services were not addressing" (Center for Women Policy Studies, 1999a).
The meeting was the most successful to date in generating participation by women living with HIV, perhaps because, as Edna Viruell-Fuentes noted, it "brought women together to talk about issues that they were facing in their very personal lives -- with case managers really hearing where they were not doing their jobs" (Center for Women Policy Studies, 1999a).
Though the Collaborative had committed itself to responding to the case management shortcomings described at the roundtable, a significant funding decrease for case management also set the context for an immediate response. In 1996, the local Title I Planning Council had cut over one million dollars from case management services and this policy shift brought the Collaborative into the arena as a key player, to address its implications for women with HIV/AIDS. During this time, the District of Columbia's Agency for HIV/AIDS estimated that more than 550 clients likely would be affected by the cutback. It was in this context that the Collaborative responded to women's request to address these issues.
Several key factors made the policy roundtable successful in its efforts to bring women with HIV together. For example, Collaborative staff conducted outreach to women through various organizations and individually to guarantee better attendance. The Center also paid women consulting fees and provided taxi vouchers.
After the roundtable, Center staff suggested to PROTOTYPES that they should conduct trainings for case managers -- to help them see women holistically, understand the concepts of sexism and its effects, understand women's diverse roles, view women not just as child bearers, learn to use language that is empowering, and understand their own limitations as case managers. The roundtable also generated the next major policy advocacy effort -- on meeting the needs of women ex-offenders living with HIV/AIDS.
The Information Sharing Meeting on Women Ex-Offenders Living with HIV/AIDS: At the policy roundtable on case management, a woman who recently had been released from prison shared her experiences, noting that she left the correctional system with little case management support and services. Her story revealed the incredible difficulties that women in prison and ex-offenders face and generated the Collaborative's active involvement on these issues.
Indeed, this woman's story led the Collaborative to become a leader in recognizing and dealing with case management shortfalls for women ex-offenders with HIV/AIDS. Recognizing the extent to which women ex-offenders were marginalized and mistreated, and how the lack of good case management hindered their opportunity to survive outside of the correctional system, the Collaborative convened an Information Sharing Meeting on Women Ex-Offenders Living with HIV/AIDS, in September of 1996.
Women ex-offenders living with HIV/AIDS shared their experiences with D.C. Department of Corrections officials, policy makers and community service providers in especially powerful ways. One woman asked the group, for example, to "imagine what it's like being incarcerated for two to three years, and ending up, for whatever reason, having to be told that you've HIV positive, without any type of counseling or education" (Center for Women Policy Studies, 1996d). This was a reality check for many officials and service providers -- and for Collaborative staff and consultants.
Based on what women revealed at the information sharing meeting, the Collaborative undertook a number of intensive policy advocacy activities. During its third year, the Collaborative launched an education campaign directed at local service providers to make them aware of the needs of women ex-offenders living with HIV. Following the publication of the Center's report, Breaking Walls: Women Ex-Offenders Living with HIV/AIDS -- Report and Recommendations from the Metro DC Collaborative for Women with HIV/AIDS information Sharing Meeting (1996d), which brought women's stories to a wider audience, there was an immediate increase in interest on this issue, which required a tremendous amount of staff time. According to Belinda Rochelle: "We devoted a lot of staff time after that information sharing meeting to dealing with the policy implications; I think we really underestimated the time and commitment to the issues that would evolve out of the things that we created" (Center for Women Policy Studies, 1999a).
This education campaign soon led the Collaborative to become involved in both federal and local policy on this issue. In fact, the Collaborative assisted in drafting a discharge planning document for ex-offenders in DC and several women activists rallied around, forming a group at the 1999 "Fighting for Our Lives" to discuss these issues further.
The Information Sharing Meeting on Housing: Women also had identified housing as a critical need for women, and women with children, living with HIV/AIDS. In response, on December 11, 1997, the Collaborative convened an information sharing meeting on housing issues for women living with HIV/AIDS in the Washington, D.C. metropolitan area. Sixteen women and three men attended the meeting (Melchior, Huba, and Panter, 1999), including community housing service providers and policy makers, who listened to women describe their needs; providers then shared information on their housing programs as well as on programmatic and funding constraints.
This type of gathering is especially important because it brings together women who need help and information and providers who have access to housing resources. Again, women's powerful stories shaped the tone and substance of the meeting. One woman shared her dilemma: "I had to make a choice, a choice that no mother should be forced to make. I had to divide my family. Because my son was thirteen he could not live with me; the housing rules did not allow it. I love my children, I love my son; he's the reason why I have survived being positive. A mother shouldn't have to make a choice like that in order to have some place to live" (Center for Women Policy Studies, 1998c).
This meeting opened the door to critical discussions between women and housing providers about women's lack of access to housing and their need for supportive services. Indeed, housing service providers were invited to the information sharing meeting in an effort to link women's needs with persons who could eventually help women with particular housing problems and challenges. Thus, the meeting allowed women to explain to policy leaders why policy changes are needed: "When a woman is homeless, it means that her children are homeless too; but those numbers are not reflected when they assess housing needs for people with AIDS" (Center for Women Policy Studies, 1998c).
Following this information sharing meeting, the Collaborative assumed a leadership role in the District of Columbia to identify the type and scope of housing services needed by women, and then shared its findings with local housing providers and policy makers. The Center's staff participated in and facilitated meetings with other AIDS advocates to increase awareness on these issues. The Collaborative also became intimately involved in concrete problem solving for women. For two years, the Collaborative issued 100 applications to women in DC living with HIV/AIDS for the annual rental assistance housing lottery.
As the Collaborative increased its activism on housing, women in the cadre became involved and one woman has become an outspoken leader for housing; she led a workshop on the topic during the 1998 "Fighting for Our Lives" training to inspire and empower other women to attend Planning Council meetings on housing and to organize tenant associations as a way to ensure that their collective voices will be heard. Finally, the Collaborative's efforts to bring this issue to the forefront in the community contributed to the creation of a local housing coalition.
Looking back, we can see a number of changes in the lives and activism of women who participated in the Collaborative. Women who became involved in policy advocacy had entered the Collaborative from diverse points; some started by attending an information sharing meeting, others came into cadre building activities first, others participated in a focus group, and still others entered through "Fighting for Our Lives." For example, Cynthia Schweitzer started with the Collaborative by participating in an information sharing meeting and she found a niche for herself, later becoming a consultant to the Collaborative and an outspoken advocate. As she wrote in an article for Woman CARE News: "After the first year, I had already made the decision to try to make a contribution. Thinking I would put my toes in the water gradually, I learned fast what a desperate need there is for women to become involved in planning and policy making about HIV/AIDS care. Before I knew what was happening, I became a member of the Ryan Wh ite CARE Act Title I Planning Council for the metro DC area; I became a member of the Maryland HIV Alliance and chair of its PWA committee and a member of the Title II Consortium. And that was just the beginning" (Schweitzer, 1999).
But the Collaborative never expected or required this level of activism from every woman involved in its activities; in fact, while some women evolved into policy advocates, others did not. But, as Leslie R. Wolfe said: "We were always really clear that you do not have to evolve into an activist. You do not have to talk to newspaper reporters. You do not have to challenge your doctor. Every woman has to come to her own level of advocacy and support for other women, and find the way that is best for her. And even though our mission is to create a cadre of women policy advocates, our function is not to put pressure on women, to say 'you're a bad woman' if you don't do it" (Center for Women Policy Studies, 1999a).
The Collaborative created a partnership among women with HIV and a national multiethnic feminist organization that sought to change a system and make the system more woman-friendly. Regardless of whether those involved with the Collaborative were living with HIV themselves, they all realized that everyone is affected by the prevalence of the HIV/AIDS epidemic in women's lives. Everyone involved with the Collaborative felt compelled to do something about it, as Leslie R. Wolfe said: "Even though we really do want to bring women into policy advocacy, part of me wants instead to not have women go through this, it's so painful.... But we need to keep our eyes on the prize, which is to create real systemic change. And the only way to achieve that, as we already know from our years in the business, is to bring into power a critical mass of people who understand what needs to happen. And I think that means whoever is the mayor, and whoever is running the big hospital infectious disease clinics -- those are the peopl e who need to be our target. And we at the Center have a responsibility to take what women tell us they need and speak -- in the strongest possible terms -- to power, to tell them 'this is what you must do.' We cannot only send women who are, in fact, fighting for their lives out there to do that -- we must speak truth to power ourselves. It is also our responsibility, not just theirs" (Center for Women Policy Studies, 1999a).
As Belinda Rochelle wrote in WomanCARE News: "More than anything, we feel that the Collaborative's biggest accomplishment was its commitment to bring women together. At every Collaborative event -- whether information sharing meetings, trainings or focus groups -- there were always some women who met other women living with HIV/AIDS for the first time. Women realized that they could end their physical and emotional isolation. Our coming together to share our stories is the true legacy of the Collaborative -- a legacy that cannot be measured by a survey and can only be measured in terms of hope and heart" (Rochelle, 1999).
TABLE ONE - INFORMATION SHARING MEETINGS Meeting Topic Date Regional Epidemiological Information February 9, 1995 Life Planning September 16, 1995 Medical Manifestations of HIV/AIDS in Women December 13, 1995 What A Woman Should Know About Protease Inhibitors August 3, 1996 Women Ex-Offenders Living with HIV/AIDS: Breaking Walls September 12, 1996 AIDS Drug Assistance Program (ADAP) for Women Living with HIV/AIDS September 21, 1996 Meeting the Housing Needs of Women Living with HIV/AIDS December 11, 1997 Meeting the Needs of Young Women Living with HIV/AIDS April 8, 1998 Identifying Gaps in Services for Women with HIV/AIDS Living in Maryland June 3, 1998 Identifying Gaps in Services for Women with HIV/AIDS Living in Virginia September 25, 1998
(*) The Collaborative's work was assessed by our evaluation subcontractor, The Measurement Group (TMG); TMG prepared a final evaluation report that the Center used extensively in preparation of this report.
Center for Women Policy Studies. (1999a). Evaluation interview with Leslie R. Wolfe, President; Belinda Rochelle, Project Director; and Edna A. Viruell-Fuentes, Research Director, for the Metro DC Collaborative. Unpublished interview transcript.
Center for Women Policy Studies. (1999b). Women with HIV/AIDS speak out: The Virginia report. Washington, DC: Author.
Center for Women Policy Studies. (1998a). Young women living with HIV/AIDS: Report of the Metro DC Collaborative for Women with HIV/AIDS information sharing meeting. Washington, DC: Author.
Center for Women Policy Studies. (1998b). Women with HIV/AIDS speak out: The Maryland report. Washington, DC: Author.
Center for Women Policy Studies. (1998c). Meeting the housing needs of women living with HIV/AIDS. Washington, DC: Author.
Center for Women Policy Studies. (1998d). Managed care: Serving the needs of women? 116 recommended consumer protections and safeguards for managed care plans & an analysis of state standard Medicaid managed care contracts. Washington, DC: Author.
Center for Women Policy Studies. (1997c). Medicaid managed care: Serving women with HIV/AIDS. Washington, DC: Author.
Center for Women Policy Studies. (1997a). "We know we're not alone" -- The voices of women living with HIV/AIDS in the metropolitan DC area: A content analysis of focus groups with African American, Latina, and white women. Washington, DC: Author.
Center for Women Policy Studies. (1997b). On the cutting edge: The Center for Women Policy Studies at 25. Washington, DC: Author.
Center for Women Policy Studies. (1996a). Roundtable of service providers for Latinas with HIV/AIDS. Washington, DC: Author.
Center for Women Policy Studies. (1996b). The AIDS drug assistance program (ADAP): A resource guide for women living with HIV/AIDS. Washington, DC: Author.
Center for Women Policy Studies. (1996c). Case management: Meeting the needs of women with HIV/AIDS. Washington, DC: Author.
Center for Women Policy Studies. (1996d). Breaking walls: Women ex-offenders living with HIV/AIDS -- Report and recommendations from the Metro DC Collaborative for Women with HIV/AIDS information sharing meeting. Washington, DC: Author.
Center for Women Policy Studies. (1996e). Medicaid managed care: Defining the issues for women with HIV/AIDS. Washington, DC: Author.
"Fighting for our lives": Third annual advocacy training. (1999, Spring). WomanCARE News.
"Fighting for our lives". (1998). WomanCARE News.
Gaberman, B. R. & Wolfe, L. R. (1999). AIDS -- The women's epidemic: Research and data in brief. Washington, DC: Center for Women Policy Studies.
Health Resources and Services Administration [HRSA]. (1994). Future directions: Increasing knowledge about health and support services delivery to people with HIV disease. Rockville, MD: Author.
Melchiro, L. A., Huba, G. J., & Panter, A. T. (1999). Metro DC Collaborative for Women with HIV/AIDS: Final project evaluation report. Unpublished manuscript.
Schweitzer, C. (1999, Spring). "Fighting for our lives": One woman's story. WomanCARE News.
National Community AIDS Partnership. (1992). Voices of courage, a choir of needs: Women, youth, families and HIV/AIDS. Washington, DC: Author.
Rochelle, B. (1999, Spring). A beginning--Not an end. WomanCARE News.
Stoll, K. D., Viruell, E. A., & Ogu, C. (1995). WomanCARE -- In their own words: Women's programs and the Ryan White CARE Act. Washington, DC: Center for Women Policy Studies.
Viruell, E. A. & Wolfe, L. R. (1996). Women and the CARE Act. Washington, D.C.: Center for Women Policy Studies.
COLLABORATIVE PUBLICATIONS: MAY 1996 -- MARCH 1999
WomanCARE News (Vol. 1, No. 1) -- Life Planning for Women Living with H/V/AIDS; Permanency Planning; Legal Documents
WomanCARE News (Vol. 1, No. 2) -- Women and AIDS: The Facts
Case Management: Meeting the Needs of Women with HIV/AIDS
What a Woman Should Know About Protease Inhibitors
WomanCARE News (Vol.1, No. 3) -- Women Living with HIV and the Ryan White CARE Act
Breaking Walls: Women Ex-Offenders Living with HIV/AIDS -- Report and Recommendations from the Metro DC Collaborative for Women with HIV/AIDS Information Sharing Meeting
The AIDS Drug Assistance Program (ADAP): A Resource Guide for Women Living with HIV/AIDS
Roundtable of Service Providers for Latinas with HIV/AIDS/Mesa redonda de proveedoras de servicios a mujeres Latinas con VIH/SIDA
Women with HIV/AIDS Speak Out on Domestic Violence (Special issue of Woman CARE News)
Give Yourself a Fighting Chance with Nutrition (Special issue of Woman CARE News)
"We Know We're Not Alone" -- The Voices of Women Living with HIV/AIDS in the Metropolitan DC Area: A Content Analysis of Focus Groups with African American, Latina, and White Women
Woman CARE News -- Supporting Latinas Living with H/V/AIDS; Moving From Fear to Faith; Women are Visible; "Fighting For Our Lives" (English/Spanish)
Woman CARE News -- Las mujeres con VIH/SIDA denuncian la violencia domestica (Boletin especial)
Lo que la mujer debe saber sobre los inhibidores de proteasa
Meeting the Housing Needs of Women Living with HIV/AIDS
Fighting for Our Lives/Luchando por nuestras vidas. Special issue of Woman CARE News (English/Spanish)
Woman CARE News -- Collaborative Convenes Two Information Sharing Meetings; Ryan White CARE Act Planning Process; International AIDS Conference (English/Spanish)
Las necesidades de vivienda de las mujeres con VIH/SIDA
"Telling My Story": Women with HIV Speak Out About Their Lives
"Relato mi historia": Las mujeres con VIH hablan sobre sus vidas
Women with HIV/AIDS Speak Out: The Maryland Report
Young Women Living with HIV/AIDS: Report of the Metro DC Collaborative for Women with HIV/AIDS Information Sharing Meeting
What a Woman Should Know About Protease Inhibitors (Revised Edition)
What a Woman Should Know About HIV/AIDS and Gynecological Care
Las jovenes que viven con la infeccion del VIH
Lo que la mujer debe saber sobre acerca del VIH/SIDA y el cuidado ginecologico
Lo que la muher debe saber sobre los inhibidores de proteasa (Revised Edition)
Las mujeres con VIH/SIDA en Maryland hablan sobre sus experiencias
WomanCARE News -- A Beginning Not an End, Fighting for Our Lives: Third Annual Advocacy Training; Fighting for Our Lives: One Women's Story; Medical Updates; How to Get What You Need From an AIDS Conference
Women with HIV/AIDS Speak Out: The Virginia Report
|Printer friendly Cite/link Email Feedback|
|Author:||Wolfe, Leslie R.; Smooth, Wendy; Renteria, Rose Ann; Gaberman, Brynn|
|Publication:||The Metro DC Collaborative for Women Living with HIV/AIDS-Telling the Story|
|Article Type:||Statistical Data Included|
|Date:||Dec 1, 1999|
|Burden of AIDS; $97,000 to fund women's HIV initiative.|
|HIV/AIDS, women and violence: two faces, one reality.|
|World AIDS Day: women are demanding!|