It’s time to restore conversations about sexuality and pleasure among women living with HIV.
#LifeandLoveWithHIV is quickly becoming a leader in a dynamic and productive conversation around sexuality among women living with HIV-a topic that is increasingly emerging from a cloak of stigma. This year, the project was one of just three to receive the Michael Smith Foundation for Health Research (MSFHR) Reach award for HIV-related research, funded in partnership with the BC-CfE.
The #LifeAndLoveWithHIV website, newly launched this past summer, aims to reduce stigma, support sexual health and serve as a source of knowledge for women, partners, care providers, HIV policymakers and the general public. Its narratives and blog posts take many shapes with one main focus: addressing the relatively novel and unchartered topic of sexuality and pleasure among women living with HIV.
With the advent of the ‘Undetectable Equals Untransmittable’ movement, research on the sexual quality of life of women diagnosed with HIV deserves attention. U=U is based on the scientifically proven fact that people with HIV who have achieved an undetectable level of virus-through sustained, consistent treatment-have zero chance of transmitting the virus to others. This concept is supported by principles of the made-in-BC Treatment as Prevention¨ strategy and is a powerful antidote to stigma and misconception around HIV.
“The website is for women living with HIV everywhere and all those who love and support them,” said Dr. Allison Carter, who was a PhD trainee on the project and working at the BC-CfE and Simon Fraser University (SFU) when the idea for the project first emerged. She now holds a Lecturer position in Sexual Health at the Kirby Institute at the University of New South Wales in Sydney, Australia. “#LifeAndLoveWithHIV grew out of our research with women in Canada; we wanted to find the best way to share knowledge and information about sexual health and we thought the way to do that was through women’s own narrative.”
According to Dr. Carter, #LifeAndLoveWithHIV is the first of its kind resource dedicated to de-stigmatizing sexuality and relationships with HIV by shifting the focus from risk to pleasure. The new website is intended as a reliable source of content and a community hub, where real-life stories can spark conversations and positively influence the wellbeing of women living with HIV.
In addition to the Reach award, #LifeandLoveWithHIV has received funding from an SFU Student Social Innovation Seed Grant and Community Engagement Fund and a CIHR Knowledge Synthesis Grant. SFU Associate Professor in Health Sciences Dr. Angela Kaida is a co-founder of the project, along with Margarite Sanchez, Valerie Nicholson, Kath Webster, and Florence Anam (each of them women who are living and loving with HIV) and Drs. Kate Salters and Sophie Patterson. UBC Professor in Obstetrics/Gynaecology Dr. Lori Brotto, an expert in women’s sexuality and sexual desire, also joins the team as a co-Investigator on the Reach Award. With partners like Positive Living Society of BC and the International Community of Women Living with HIV, the community has played a leading role in the project from the beginning.
The site aims to represent the full breadth of women’s views and experiences. “Women who are writing on the site are incredibly diverse from where they live, to their genders, sexual orientations, and experiences with sex and relationships. Some of the stories will make you laugh and others will make you cry. All of them will help you understand things differently,” said Margarite Sanchez, who has been living with HIV and happily married for over 25 years.
Currently, #LifeAndLoveWithHIV has six regular writers, who are all women living with HIV, and contributions have come from many corners of the world such as South Africa, Kenya, Canada, the United States, Spain and New Zealand. With the funding from the Reach award, project staff will continue to hire writers and offer mentorship to support their development of writing and storytelling skills.
The hope is that the site will continue to grow and evolve. Already it has quickly gone from 200 to 900 followers on Facebook. Dr. Carter says another key part of the growth would be to expand to other audiences, including partners-be they living with HIV or in relationships with women living with HIV-and couples.
Further down the road, researchers would like to assess and evaluate the reach and impact of the project’s website and social media outreach via YouTube videos, Twitter parties, Instagram photos and more. The key question: Could this type of digital feminist activism promote sexual health?
So far, reactions to the launch-through email, social media and comments received-have been very positive. For women living with HIV who are reading stories from their peers, the impact can be lifechanging. “I had one woman say it inspired her to get back into the dating scene,” said Dr. Carter. “I am excited for the impact this could have on the world. In this contemporary era of HIV treatment, this is a timely and important initiative to not only save lives, but also improve the quality of women’s lives.”
Follow #LifeAndLoveWithHIV on: Facebook, Instagram and Twitter.