SFU study explores stigma faced by HIV-positive women

Stigma surrounding HIV is shown to has a negative effect on sufferers.

Women living with HIV have high rates of sexual inactivity and dissatisfaction, and a lower quality of life. This is according to Angela Kaida, the Canada Research Chair in Sexual and Reproductive Health, and one of the women who is part of a research group studying stigma surrounding HIV.


The Peak got a hold of Kaida, who is an assistant professor at SFU’s Faculty of Health Sciences, to talk about the project, potential changes that could arise, and how they’re hoping to reduce stigma.


The Peak: In regards to educating the public, how will this project help remove the HIV stigma?


Angela Kaida: First, the really good news: with improving access and adherence to antiretroviral therapy (ART; the standard of treatment for people living with HIV), HIV is increasingly considered a chronic disease [and no longer an infectious disease].


People living with HIV (PLWH) who start treatment early and are adherent have life expectancies on par with HIV-uninfected people. We now also have evidence showing that when people living with HIV are successfully on ART and achieve a suppressed viral load (which means that there is such a low number of HIV virus particles in the blood, that they can’t be detected by standard lab tests), the risk of HIV transmission to sexual partners approaches zero, even when condoms are not being used.


Sadly, however, in Canada and elsewhere, increasing use of ART has not substantially alleviated the presence or impacts of HIV-related stigma and discrimination. There is a plethora of evidence showing how damaging HIV-related stigma is to the health and well-being of women living with HIV.


The impacts of stigma include increasing delays in accessing HIV care and treatment, growing fears of disclosing HIV status, and pervasive high levels of violence towards women living with HIV.


A satisfying sex life is a critical part of health and well-being for all people, including women living with HIV. For women living with HIV, we’ve spent a lot of time talking about and measuring HIV risk reduction practices (like condom use) but we’ve said far less about ‘healthy sexuality.’


We recently published a paper which showed that only half of women living with HIV in Canada had any consensual sex in the last year. This rate of sexual inactivity was much higher than rates observed among both HIV-uninfected women and HIV-infected [men]. We found these rates even though most women were on treatment with good treatment outcomes, suggesting that good treatment outcomes alone aren’t enough to ’normalize sex and intimacy.’ In fact, women experiencing the highest levels of HIV-related stigma were the least likely to be sexual active. These data underscore an urgent need for interventions to de-stigmatize HIV and re-appropriate the sexual rights of women living with HIV.


TP: What type of new policies would you like to have implemented to help address HIV treatment and prevention?


AK: We can’t talk about HIV-related stigma without talking about our legal approach to HIV.


Canada has among the most aggressive judicial approaches to prevent perceived sexual exposure to HIV through the criminalization of HIV non-disclosure. In October 2012, the Supreme Court of Canada ruled that PLWH are legally required to disclose their HIV status to sexual partners prior to sexual activity that poses a “realistic possibility” of HIV transmission.


The Supreme Court defined realistic possibility as any sexual activity without the use of a condom and without a low HIV plasma viral load. PLWH who fail to meet both criteria and do not disclose their HIV status to sexual partners risk a criminal charge of aggravated sexual assault. If convicted, this charge results in jail time with a maximum sentence of life imprisonment and mandatory listing on a national Sexual Offender Registry.


So here we have an inconsistency between legal definitions of the “realistic possibility” of HIV transmission and contemporary scientific assessments of HIV transmission risk and prognosis. The legal response to HIV non-disclosure detracts from rights-based approaches to improving the sexual health of WLWH and propagates stigma and misconceptions about the sexual and reproductive realities of living with HIV.


TP: What needs to be done to help remove the HIV stigma?


AK: One of the most important things to be done is to ensure that women living with HIV are at the forefront of all discussions, decision-making, and programming that affects their lives.


Our study, the Canadian HIV Women’s Sexual and Reproductive Health cohort study (CHIWOS) is a community-based research study with 1,425 women living with HIV enrolled across BC, Ontario, and Quebec. We need to move towards models that advocate for Positive Health, Dignity, and Prevention frameworks, which place the person living with HIV at the centre of their health, care, and well-being, well beyond a role in “positive prevention” of on-going transmission of HIV.


We also must collectively erase the view of women living with HIV as “vectors, vessels, and victims,” rather see them as empowered individuals with agency, deserving of loving, intimate relationships.


TP: Is there anything you’d like to add about the project, or even just on the topic of HIV?


AK: The #lovepositivewomen movement is doing important and powerful work on this front. And we need to document the harmful ways that structural factors such as the threat of criminalization of HIV non-disclosure compromise women’s health and public health goals.


But, as importantly, we need to document that many women living with HIV across Canada are in healthy, sexual satisfying, emotionally connected, intimate, and loving relationships! This is an important part of changing the narrative of what it means to live life after HIV.
Angela Kaida works with a team of women living with HIV, researchers, clinicians, and students across Canada to conduct this work, and encourages any questions on this discussion. You can find out more at www.chiwos.ca .