As with consumer involvement and cultural competency, the philosophy of going where patients are is a theme throughout the Ryan White HIV/AIDS Program. For example, as HIV/AIDS prevalence increased in urban areas outside gay epicenters, suburban neighborhoods, rural areas, and the South, the Ryan White HIV/AIDS Program responded by filling service gaps in these areas. Ryan White Part A and B funds were used often to increase capacity in these newly affected urban and suburban neighborhoods. Part C funds, in particular, have been used to support providers in rural areas and, through tools such as planning grants, have helped providers acquire the capacity to provide culturally competent services that defy stigma and engage clients in care. The Ryan White HIV/AIDS Program has fostered crucial collaboration with and participation of federally funded community and migrant health centers (CHCs) in the quest to provide HIV screening, testing, and services. Because CHCs often are already the medical home for underserved and uninsured individuals, empowering these organizations to address HIV/AIDS offers what is often the best—and only—possibility for providing a safe, supportive, and encouraging environment in which these individuals can choose to be tested and access services.
The William F. Ryan Community Health Center is a federally funded CHC in Boston. Dean LaBate, a PLWHA who was once the agency’s health services administrator, says: “We wanted to make sure that PLWHA felt they were being treated the same as all our patients [and] did not want to attach stigma to an HIV-positive status, or have PLWHA feel discriminated against.” According to LaBate, staff members were trained on how to ensure PLWHA felt welcome, and to develop intake procedures and forms that “did not scream AIDS to the rest of the world and assured PLWHA that we were protecting their information as much as possible.”
Fear of disclosure can prevent many people from being tested for HIV.
A Continuing Commitment to Learn and to Educate
In addition to the far-reaching work of the Ryan White HIV/AIDS Program, there have been significant efforts to address stigma among the public. Government-funded and privately funded advertising and education campaigns have targeted communities around the globe. The Americans with Disabilities Act (ADA) prohibits health care entities from discriminating against PLWHA and/or denying them services made available to other patients.29,30 The Health Insurance Portability and Accountability Act (HIPAA) of 1996 established protocols that protect PLWHA against unwanted disclosure of their HIV status.31 The U.S. Centers for Disease Control and Prevention’s (CDC’s) program Business Responds to AIDS/Labor Responds to AIDS facilitates HIV education and prevention in the workplace, and seeks to protect PLWHA workers from stigma and discrimination.32 Yet stigma and its effects continue, and the work to stop it goes on.
In May of 2003, HAB and George Washington University convened a consultation meeting of community members and experts on HIV/AIDS stigma. The purpose was to identify key issues and challenges of addressing stigma and breaking down barriers through the Ryan White HIV/AIDS Program. Together, researchers, program directors, and PLWHA created a comprehensive picture of the role stigma continues to play in blocking access to care, negatively affecting health and quality of life, and fueling HIV incidence. Presenters illustrated how, through identifying and implementing best practices, some interventions have been able to reduce the impact of stigma in the populations they serve. Out of that consultation came the following:
- A significant literature review on stigma and HIV/AIDS,
- A detailed summary of presentations made in the consultation meeting, and
- An issue of the HRSA CAREAction newsletter on stigma that was distributed to providers in this country and abroad. (To request a copy, please visit http://hab.hrsa.gov/livinghistory/newspublications/archivedissues.html.)