One thing HIV can teach young innovators

SFU social innovator Allison Carter is a public health researcher and PhD student, studying and promoting positive sexuality for women living with HIV. Follow her on Twitter at @MissAllieCarter.  The SFU Student Social Innovation Fund, a collaboration between RADIUS and Embark, provides project funding of up to $1000.
Nothing for us, without us.
Those simple five words are at the heart of the HIV response and an important lesson for any young innovator working toward social change in the world. Embodied in this mantra is the fundamental recognition that affected communities – in this case, people living with HIV – are experts in their own lives. Certainly, people with degrees have important academic knowledge. But having a few letters after your name, whether BSc, MD, PhD, FRCP, or whatever acronym is relevant to your field, doesn’t necessarily mean knowing much about life in the real world, especially when it comes to life with HIV.
I am not HIV-positive. I have never experienced the life-altering moment of being diagnosed with HIV. I haven’t felt the many emotions that run through your head – fear, anger, blame, and self-hatred, among others I’m told. I haven’t had to experience the difficulties of grief, loss, and starting over with HIV. I don’t know anything about what it’s like to disclose my HIV-positive status and be mistreated, rejected, or worse, physically harmed. And I’ve certainly never had to contend with the bizarre reality of being told you can live a normal life with HIV yet still be treated like you’re a threat to society.
Treatment today can give people with HIV a near normal life expectancy as well as reduce the chance of transmission to almost zero. That’s worth repeating: ZERO. Remarkably, however, much of society still perceives HIV as a death sentence and treats HIV-positive persons with fear, prejudice, and moral judgment. Stigma and misinformation exist in abundance, repeatedly reinforced by harmful cultural and media portrayals of people with HIV as ‘villains’, unless of course, you were born with HIV or got it through poor medical practices, in which case you’re an ‘innocent victim’. And then, there’s the law. In Canada, more than 150 people living with HIV have been charged and registered as “sex offenders” for not disclosing their HIV status, despite the many valid reasons why someone might choose not to disclose (violence being just one) and no malicious intent or transmission in many cases before the court. I can’t think of another disease where the discrepancy between science and society is so great.
I learned about these issues from numerous books, hundreds of research articles, and many dear friends and colleagues who live with HIV. But simply put, I do not have any lived experience. It’s a stigmatized life I can barely imagine, let alone fully understand. So, I’m sure you can appreciate my nervousness when I decided to take that first step to starting a website dedicated to providing women living with HIV, and their partners and care providers, with positive, respectful, and empowering information and support around dating, love, sex, and relationships called Life and Love After HIV.
How did I get here?
I’m a first-year PhD student in health sciences at Simon Fraser University, conducting feminist quantitative research to understand the benefits and pleasures of sexuality and intimate relationships among more than 1,400 HIV-positive women across Canada. In a field overcome with studies on danger and disease, I wanted to focus on the sexual and intimate rewards women with HIV can pursue and enjoy, rather than the “risks” they should avoid. I admit I cannot take credit for this upbeat idea. Instead, it was through listening to the voices of women affected by HIV that I decided to take the road less travelled.
Before embarking on this journey, I had the privilege of working closely with women living with HIV on important community health issues through my role as research coordinator for the Canadian HIV Women’s Sexual and Reproductive Health Cohort Study, or CHIWOS. We work in a field where sex is an appropriate workplace topic, and over the years, I heard many stories about singledom, dating, relationships, breakups, abstinence, sex, love, and romance. While there are plenty of success stories, the challenges and difficulties women face are also great, and sure enough, we found this in our research. In an article published in the Journal of the International AIDS Society, we reported that half of Canadian women living with HIV are not sexually active and the odds are much higher for those feeling HIV stigma most strongly. If there is one take-away from our work, it is that relationships and sexuality are the areas of life most affected by the disease yet they remain tremendously neglected in research and practice.
After five of the most transformative years of my life and with support from my colleagues, I made the bittersweet decision to end my job and go back to school. Fortunately, I am still involved part-time and the study, or more importantly, the community and relationships I helped build form the basis of my PhD. As a fresh graduate student determined not to get caught in the academic vortex of grants and publications, I said to myself: Don’t just study it. Change it. Women and couples not only desire but also deserve access to non-judgmental and affirming information and support to help them lead positive, fulfilling sex lives after an HIV diagnosis. While many such campaigns for HIV-positive gay men exist and even more for people affected by cancer and other non-stigmatized chronic diseases, there are far less sex-positive resources for women with HIV. That brings us to today:
If it doesn’t exist, create it.
Through the support of Social Innovation seed funding from RADIUS and Embark, and with the meaningful engagement of women living with HIV as active and equal agents of change, we are launching an online resource,, later this year. Through this website, we plan to share research, build community, provide resources, and confront the silence and taboos about HIV-positive women’s sexuality. Enhancing the quality of women’s relationships (whatever form they take) and their sexual wellness not only has the potential to promote greater health and happiness but is also a topic of great importance in it’s own right.
We are at an exceptionally optimistic moment in the history of HIV. Community activists, scientists, politicians, clinicians, and other voices are hailing the unprecedented breakthroughs in medical treatment that have the potential to stop new HIV infections and end the epidemic by 2030. It’s time for society to catch up to science and help us normalize life and love after HIV.