Established in 1993 by the National Institute of Allergy and Infectious Diseases (NIAID) in partnership with other NIH agencies, WIHS is a collaborative, multi-center prospective observational cohort study of women who are either HIV-infected or at risk for HIV infection. The purpose of WIHS is to characterize the long-term, natural and treated history of HIV infection in the existing cohort of women, and to recruit and retain new women into the cohort to provide insight into the changing demographics of the HIV/AIDS epidemic among women in the United States.
WIHS was launched at six clinical research sites in the Midwest, West Coast, and East Coast. In 2013 WIHS expanded with four new sites in Atlanta, Chapel Hill, Miami and Birmingham to address the growing burden of the AIDS epidemic among minority women in the South. Current sites include: Bronx, New York; Brooklyn, New York; Chicago, Illinois; Washington, DC; San Francisco, California; Los Angeles, California; Atlanta, Georgia; Chapel Hill, North Carolina; Miami, Florida and Birmingham, Alabama.
Approximately 4,137 women are currently enrolled in WIHS. The AtlantaWIHS, led by co-principal investigators Ofotokun and Wingood began enrollment on Oct. 1, 2013 and will continue to recruit 300 HIV-infected and at-risk HIV negative women from across the state who will be evaluated bi-annually. Housed at the Grady Infectious Diseases Program Clinic (The Ponce Clinic) and the Woodruff Extension Building at Grady Emory Campus, the Atlanta WIHS study offers a standard gynecologic exam and PAP smear, physical, and routine laboratory tests to all participants during each study visit.
“A number of the women enrolled in the Atlanta WIHS study so far have no primary care providers nor health insurance and need a wide range of health care services. These women are beginning to benefit from the WIHS linkage to care program that is helping to facilitate access to these services available within the State for WIHS participants,” says Wingood, who also co-direct the Emory CFAR Prevention Science Core.
“The expansion of the WIHS clinical research sites in the South opens new opportunities to advance women’s health research in HIV/AIDS in Atlanta and Georgia.
We have begun to feel the excitement and the support from the community and we are receiving a record number of referrals of potential participants from both the Emory and non-Emory based practices in town,” says Ofotokun who also is a staff physician at Grady Memorial Hospital.
A critical component of the Atlanta WIHS is its roots in the community made possible by a long-standing collaboration between Emory and various community-based groups in the metro Atlanta area. Through these relationships Emory physicians and researchers have developed a deep appreciation for the role of community in research, building trust and gaining respect within the HIV/AIDS community.
For many years, community-based organizations have worked side-by-side with Emory investigators to ensure successful implementation of NIH-Division of AIDS (DAIDS) supported research projects, including those conducted by the AIDS Clinical Trials Network (ACTG), HIV Vaccine Trials Network (HVTN), and the HIV Prevention Trials Network (HPTN).
“We are honored and excited for the opportunity to partner with Emory as a new WIHS site,” says Dazon Dixon Diallo, founder and president of SisterLove. “This is an incredible moment for women living with HIV in the deep South, and we are looking forward to being an integral part of advancing the knowledge of how to fight HIV and AIDS. We believe that women, especially those who are living with HIV/AIDS, are the key to ending the epidemic, and we recognize the importance of their engagement in service delivery, advocacy, policy and research.”
“The WIHS is a tremendous tool for advancing HIV science in women’s health and bridging the gender gap in research participation,” says Lauryn Taylor, a member of the newly formed Community Advisory Board (CAB) for the Atlanta WIHS. “It offers a unique opportunity for women to give back and to contribute towards the fight to overcome this epidemic.”
Other members of the Atlanta WIHS Community advisory board include representatives from the Center for Black Women’s Wellness (CBWW) and AID Atlanta. “Continuing engagement of the CAB members and the organizations they represent will be vitally needed for the success of the Atlanta WIHS,” says Paula Frew, PhD, Emory assistant professor of medicine and a WIHS investigator.
“This study allows those who may not have otherwise had access to health care the chance to access regular examinations and referrals for health and social services,” says Neena Smith-Bankhead, director of the department of education and volunteer services at AID Atlanta and WIHS CAB member. “I applaud Emory University and the other southern partners on successfully competing to bring the WIHS study to the southeastern region of the United States, offering the women of this region an opportunity to be represented in this groundbreaking national research project.”
Additional information about the Atlanta WIHS can be obtained by contacting the Project Director, Sara Sanford: firstname.lastname@example.org.
The WIHS is primarily funded by the National Institute of Allergy and Infectious Diseases (NIAID) of the NIH, with co-funding from the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD), the National Cancer Institute (NCI), the National Institute of Mental Health (NIMH), and the National Institute on Drug Abuse (NIDA).
Women have been affected by HIV/AIDS since the beginning of the epidemic. Of the more than 1.1 million people living with HIV in the U.S., nearly 280,000, or 24 percent are women. Women of color, particularly Black women, are disproportionately affected by HIV, accounting for the majority of women living with the disease and women newly infected and HIV-related deaths among women in the U.S.