This spring marks the 19th anniversary of WHP. When we opened our doors in 1993, we were the first program in the nation dedicated specifically to caring for HIV+ women. In this update, I’d like describe a few recent developments in the program.
Our new strategic plan
The most important recent development for the program was the completion of our new 5-year strategic plan. This plan is important because programs like ours face a “perfect storm” of increasing numbers of patients and declining governmental support. In this setting, WHP needs to make sure that: 1) HIV+ women receive care that provides true healing, hope, and community and 2) its limited resources are maximally leveraged. To accomplish this task, WHP was honored to receive a $275,000 3-year grant from the California Wellness Foundation (TCWF) to develop a strategic plan to strengthen our services and ensure our financial stability. This grant, itself, was a strong endorsement of WHP.
Our goal was to develop a strategic plan for WHP that is both patient–centered and evidence based. One key focus of the process was to better understand why a significant number of HIV+ women in care at WHP, and at other programs throughout the country, experience poor health outcomes despite an array of services available to them. To us, effectively addressing this group of women would transform WHP from being an excellent multidisciplinary clinic to one that is a true model of healing and hope for this population. WHP hired a strategic planning consultant, Laura Critchfield, with longtime expertise in community engagement to ensure a sufficient focus on understanding the unmet needs of our clients and soliciting their ideas for solutions to them. She convened several structured retreats: one with a sample of our patients; and others with our staff, our program leadership, and our Advisory Council.
For example, on December 19, 2009, a group of 19 representative patients participated in a daylong discussion about their hopes and dreams for an ideal system of care for HIV+ women. In group discussions, many women described feeling profoundly ashamed of being HIV+ and feeling isolated and hopeless as a result. They uniformly described struggling with poor body image. They identified stigma, shame and isolation as the principal obstacles to their health and well-being. To overcome these obstacles, they proposed a more active and empowered role for themselves in their own health and healing.
In addition to the direct input from our patients and staff, the strategic plan was guided by new research into the unmet needs of our clients. TCWF support allowed WHP’s leadership to analyze the large amount of clinical data collected by our program. Specifically, we sought to determine which factors lead to poor health outcomes among the patients we serve. The results of this study were presented at the principal national HIV conference (CROI 2010) in February of 2010. The study found that trauma and drug addiction were incredibly common in our patients and that unaddressed recent trauma was the single-most significant predictor of poor health. This data provided a crucial clue to why so many HIV+ women fare poorly despite the availability of multidisciplinary services.
Taken together, the data from our focus groups and research strongly suggest that an effective model of care for HIV+ women requires an expanded focus on trauma (i.e., trauma-recovery, trauma-prevention, and addiction services that recognize the predisposing role of trauma). In addition, the data call for developing innovative community-based partnerships that empower women to overcome stigma, shame, and isolation. This work informed an ambitious new mission statement for our program, written in partnership with our patients: Building a safe, healthy, and hopeful community for HIV+ women.
Our recent work towards fulfilling our mission
I would like to highlight a few steps we have taken recently to live up to our new mission statement. My proudest professional accomplishment has been our work, described below, to empower HIV+ women to tell their stories and come out about their diagnosis.
- Community Partnerships
We recognize the need to form partnerships with community organizations to effectively deal with issues such as stigma, shame, body image, and isolation that are very difficult to address in the confines of traditional medical settings. To this end, we formed an incredibly successful relationship with the legendary performance artist Rhodessa Jones and her organization, Cultural Odyssey. WHP collaborated with Cultural Odyssey to develop and apply for a series of grants to support a year-long performance workshop with our patients about their experiences being an HIV+ African American woman. The workshops culminated in an 8-night professional theatrical run seen by over 1000 people, including families, friends, other HIV+ women, and community members. Participants describe the results as transformative. The group is still intact and growing, performing regularly in settings that have the potential to impact at-risk women and girls. Most recently, the group was the featured performance at California State Senator Mark Leno’s annual Young Women’s Conference. For more details about the collaboration between WHP and Cultural Odyssey, please look at the links in the “News and Events” section on our home page. There, you can link to a short documentary or listen to a interview on the local National Public Radio affiliate with Ms. Jones and one of the performers from WHP. A professional, feature-length documentary about the project and performance is currently being edited.
- Dissemination of Research Findings
To realize our goal to influence the care received by HIV+ women throughout the state, we are dedicated to disseminating our research findings. To this end, we have recently submitted for publication: 1) our study demonstrating that recent trauma is the single-most significant predictor of poor health and transmission risk outcomes for HIV+ women, and 2) the first “meta-analysis” to date demonstrating very high rates of 8 different types of trauma and PTSD in HIV+ women. In addition, we have partnered with the San Francisco Department of Public Health to formally study the impact and replicability of the performance project with Rhodessa Jones. This study has the potential to help others develop similar performance programs that address stigma, isolation, shame and silence about HIV in minority communities.
Challenges and Opportunities Ahead
There are, however, a number of challenges at hand. The Federal grants that have supported the program for 18 years will stay "flat funded" again this year, at best, despite predictable increases in operating expenses. The new Centers for Disease Control (CDC) call for greatly expanded HIV testing will lead to an increase in newly diagnosed women seeking care. The epidemic continues to affect more and more women, especially minority women. Many of the City's surviving pediatric cases are rapidly approaching adolescence, a time when the program seeks to assume full care of them. As such, the program is faced with the need to serve more people with fewer resources.
We have, however, predicted these challenges and are prepared to face them vigorously. Besides our 5-year strategic plan, the program now has the most invigorated Advisory Committee (AC) in its history. This committee is my partner in leading WHP. Recently, a number of influential, articulate, and inspired new members have joined the AC, including: Jan Farren, an accomplished bank executive; Rhodessa Jones, a performance artist and co-artistic director of Cultural Odyssey; Nate Kramer, a science liaison for the company Takeda Pharmaceuticals; and Lisa Poulson, a managing director at the public relations firm Burson-Marsteller .
Much of our recent success is due to the passion and activism of the members of our Advisory Committee, and the generosity of individual and foundation donors. I am sincerely grateful that I work alongside such dedicated and compassionate people. Together, we will ensure that vulnerable women and families affected by HIV receive every opportunity to lead healthy and successful lives.
May you and your families have a healthy and prosperous spring and summer of 2012!!
Eddy Machtinger, MD