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This blog post first appeared on Positively Aware. It represents a report taken from a session presentation summary at this year’s US Conference on AIDS (USCA), a community-based event which was held in September in Washington, DC.
The authors are Danielle Campbell, Julie Patterson, David Evans, Pedro Goicochea, Moisés Agosto, Dawn Averitt, Catalina Ramirez, and Karine Dubé Danielle Campbell, Julie Patterson, David Evans, Pedro Goicochea, Moisés Agosto, Dawn Averitt, Catalina Ramirez, and Karine Dubé.
The need for a cure is critical, but will the search for HIV cure strategies include women? Women are drastically underrepresented in HIV cure research studies. A review of 159 studies showed that only 18 percent of HIV cure study participants were women. Women have a high willingness to participate in research, although they are in general less willing than men to take risks related to HIV cure research interventions. Research is in the works to better understand the differences in willingness, but studies outside of the HIV cure arena suggest that if structural barriers to participation are diminished, and more effort is made to establish trusting relationships between investigators and participants, more women will participate.
Currently, there is no cure for HIV. Only one person has been cured, Timothy Ray Brown, after receiving two bone marrow transplants that simultaneously rid his body of HIV infected cells and gave him new cells that are resistant to HIV. Scientists are trying to replicate his cure. The transplant of stem cells is a central HIV cure strategy being investigated, particularly to eliminate nearly all traces of the virus from a person’s body (e.g., an eradicating, or sterilizing, cure). Other methods include the early administration of antiretroviral treatment, combined with a variety of strategies that make HIV more visible to infection-fighting immune cells, improving the immune system’s ability to detect and eliminate infected cells, and possibly rendering immune cells impervious to HIV infection.
Scientists suspect that there are gender-based differences that affect how these investigational interventions might work inside the body. For example, two studies have suggested that the presence of female hormones and hormone receptors on immune cells might make it more difficult to flush HIV out of hiding. In addition, cis-gender women who have female chromosomes are genetically primed for stronger immune responses to infection and to vaccines. They might, perhaps, have an advantage if vaccines or other approaches to prime the immune system’s response to HIV are used.
While studies of all diseases have traditionally lagged far behind in terms of participation by women, HIV has more recently had a better track record in terms of prevention and treatment trials, and improvements in recruitment and retention guided in part by the efforts of the Women’s Interagency HIV Study (WIHS), which is an NIH-funded cohort (or group) that studies the impact and progression of HIV infection among women in the United States. It is the largest and longest running HIV cohort focused on women. In total, 4,982 women at nine sites have participated in the cohort to date. The WIHS cohort is also uniquely diverse in that it is reflective of the US epidemic among women. The WIHS cohort is a great platform to advance HIV cure-related research in the United States. WIHS participants volunteer in studies that measure the HIV reservoir in the blood, genital tract, and other tissues, that study the role of sex hormones on HIV reservoirs and that examine the relationship with ART pharmacology.
The WIHS cohort has been creative in overcoming challenges to women’s participation in HIV cure research. For example, if women are asked to come in fasting for a lab test, the study site provides a substantive meal after the procedure. Providing mileage reimbursements, metro vouchers, and taxi rides are critically important, since transportation issues are a main deterrent to participation in research. Other strategies to improve sex equity in HIV cure-related research include addressing eligibility criteria, adapting recruitment strategies, and engaging community members as early as possible in the process. For this reason, WIHS could serve not only as a model for successful recruitment and retention of women living with HIV into research, but also as a source of participants who might be inspired to participate in HIV cure-oriented research.
Including women in HIV cure research means:
- Thinking about what they need: different types of recruitment strategies and study coordination which may benefit from partnerships with different organizations or advocacy groups
- Listening to what they want: information and a chance to participate, fair reimbursement and compensation, assistance with logistical barriers
- Designing studies that reflect them: re-thinking eligibility criteria to balance participant risk with exclusions that disproportionally affect women
- Prioritizing their involvement: a few women or a single study is not enough, we need to advocate for representation of all women, including transwomen
More Resources on Women and HIV Cure-Related Research
The Well Project/Women’s HIV/AIDS Research Initiative
The Well Project is a non-profit organization whose mission is to change the course of the HIV/AIDS pandemic through a unique and comprehensive focus on women and girls.
Treatment Action Group
A great resource for articles, reports and other information related to HIV cure research efforts.
Advocacy resources: treatmentactiongroup.org/CURE/advocacy
Media monitor which tracks cure research related news, places stories in context and addresses inaccuracies: treatmentactiongroup.org/cure/media-monitor
A listing of clinical trials and observational studies related to the research effort to cure HIV infection: treatmentactiongroup.org/cure/trials
AVAC
AVAC's work includes a range of activities aimed at addressing: ethical issues, including community involvement in research; standards of prevention and care in trials; and community engagement and research literacy outside the context of a specific clinical trial or intervention.
HIV Cure Research Glossary
This glossary is designed for the media and laypersons interested in understanding the issues involved in HIV cure-related research.
CUREiculum
The CUREiculum is a suite of tools that provides simple, accessible information on HIV cure research, organizing into a systematic format for ongoing or issue-specific learning.
Social and Ethical Aspects of HIV Cure Research (searcHIV)
searcHIV is a multi-site, multi-disciplinary working group focusing on investigating the biosocial implications of HIV cure research.
Women’s Interagency HIV Study (WIHS)
The Women’s Interagency HIV Study (WIHS) is a large, comprehensive prospective cohort study designed to investigate the progression of HIV disease in women.