HIV self-testing is a powerful tool, particularly if delivered through an approach that meets people where they are. Making self-tests available can promote uptake by offering people privacy, independence, and control as they decide when and where to take an HIV test. By increasing access and empowering individuals, HIV self-testing is an innovative way to help Canada achieve the 95-95-95 targets by 2025. It can also be an opportunity to connect individuals to health care, treatment, and supports.
There are also risks associated with HIV self-testing. Self-testing can be used in a coercive manner (e.g. by someone forcing their partner to take the self-test), a positive HIV test can lead to unexpected legal risks, and there can be implications around disclosure. For example, when a confirmatory test is done anywhere but at a designated anonymous testing site, in most places a person’s name and contact information will be reported to public health authorities. People may then lose control over disclosure of their HIV positive status.
In addition, a positive test (even without laboratory confirmation) can trigger criminal law obligations to disclose one’s HIV positive status. People living with HIV in Canada continue to be charged, prosecuted, and convicted of aggravated sexual assault for HIV non-disclosure even when (i) there is no allegation of HIV transmission, (ii) there is no intention to transmit, and (iii) the sexual activity in question poses negligible to zero risk of transmission. Black people, Indigenous women, and gay, bisexual, and other men who have sex with men are disproportionately charged and convicted in Canada.
People should understand these implications before they take a test. Failing to provide information about the many consequences of a positive HIV test risks further marginalizing people and communities who are more likely to be criminalized, and/or who may already face many barriers to care and supports.
We can lessen the harms stemming from the risks by taking an approach to HIV self-testing that respects a person’s privacy, independence, and control throughout the testing process and after a positive test result. Supporting a person’s right to make informed choices about who they tell, how, and when can increase their safety and enhance their engagement and retention in care. This human rights–based approach would include the following information with every test kit, and service providers and those distributing the kits should also be familiar with this information and able to support test users in making an informed choice:
Options to confirm a positive test result
After a positive HIV self-test, a person will have to take a laboratory blood test to confirm the result to receive HIV-related care and treatment. In some places (e.g. Ontario), people can seek anonymous HIV confirmatory testing, and may also be able to obtain HIV-related care and treatment without their name being reported to public health authorities. It is critical for many people, especially those who are most marginalized by criminal legal, immigration, and public health systems, to maintain control over who is informed of their HIV status. All people taking an HIV self-test should be informed of (i) the different testing options (e.g. nominal and anonymous) and what can happen after they get tested, and (ii) whether their name or other personal information will be shared with public health authorities.
Information on HIV criminalization
The criminalization of people living with HIV for not disclosing their HIV positive status has enormous legal implications for people who test positive. All people taking an HIV self-test should be informed of their rights and how the law affects them if the self-test result is positive, even before a confirmatory laboratory HIV test is done.
Linkages to care, treatment, and supports
In addition to HIV criminalization, a positive HIV test can increase the risk of public health surveillance, intimate partner and other violence, and could affect one’s immigration status. Appropriate referrals to services, including legal services, should be provided with the test kits to assist with safe engagement in prevention and/or care. While HIV self-testing can offer opportunities to connect to health care, the reality is that people who test positive may not have access to care, treatment, and supports or may encounter long waitlists when they seek care. Investments in HIV self-testing need to include investments in peer and other supports that provide important human connection, information, and services, as well as adequate resources to support entry into health care and access to treatment. All people taking an HIV self-test should be provided with information about these resources.
A human rights–based approach to self-testing in Canada is the only way to achieve our shared goal of ending needless infections and linking people to health care in a safe and supportive way. We can end HIV as a public health threat, but only by providing people with the information they need to understand and safeguard their human rights.
SIGNATORIES:
HIV Legal Network
HIV & AIDS Legal Clinic Ontario (HALCO)
CAAN Communities, Alliances & Networks
PAN
Women’s Health in Women’s Hands (WHIWH)
2-Spirited People of the 1st Nations
Action positive VIH-sida
AIDS Coalition of Nova Scotia
AIDS Committee of Durham Region
AIDS Committee of North Bay and Area
AIDS Committee of Ottawa
AIDS Committee of Toronto (ACT)
Aids New Brunswick
AIDS Programs South Saskatchewan Inc. (APSS)
AIDS Vancouver
Asian Community AIDS Services (ACAS)
BRAS Outaouais
Butterfly (Asian and Migrant Sex Workers Support Network)
Canadian Aids Society
Canadian Public Health Association
Casey House
CATIE
Centre des R.O.S.É.S. de l’Abitibi-Témiscamingue
Centre for Gender and Sexual Health Equity (CGSHE)
Coalition des organismes communautaires québécois de lutte contre le sida (COCQ-SIDA)
Community-Based Research Centre
Elevate NOW
Fife House
GAP-VIES (Groupe d’Action pour la Prévention de la transmission du VIH et l’Éradication du Sida)
Hemophilia Ontario
IRIS Estrie
LetsStopAIDS
Living Positive Resource Centre Okanagan
Ontario AIDS Network (OAN)
Options HIV West Yellowhead
Parkdale Queen West Community Health Centre
PEERS Alliance
Peterborough AIDS Resource Network
Portail VIH/sida du Québec
Positive Living Niagara
Réseau de la santé sexuelle des Sourds du Québec (RSSSQ)
Stella, l’amie de Maimie
Streetworks
Tandem Mauricie
Toronto People With AIDS Foundation
Trellis HIV & Community Care
Vancouver Island PWA Society (VPWAS)
Women and HIV / AIDS Initiative