By Rod Knight and Jeffrey Morgan

As another World AIDS Day approaches (December 1), we in British Columbia have lots of successes upon which to reflect. This year, Vancouver has seen some of the lowest numbers of new HIV cases—due, in part, to the uptake of pre-exposure prophylaxis (PrEP) by thousands of people across the province.

PrEP—a once-a-day pill that is highly effective at preventing HIV-negative people from contracting the virus—has been publicly available in B.C. for almost two years to those deemed “clinically at risk of HIV infection”, including for men who have sex with men and people who inject drugs. Publicly funded PrEP, which can otherwise cost hundreds of dollars per month, is a testament to the advocacy that affected communities have done to make this life-saving medication widely accessible to those who need it.

The role of community in response to HIV/AIDS also extends into research, where people affected by HIV/AIDS have demanded inclusion in the research decision-making process—putting the slogan “nothing about us without us” into action. As public-health scientists working on HIV, we collaborate with the Investigaytors, a group of young gay, bi, trans, two spirit, and queer (GBT2Q) volunteers and community-based researchers interested in GBT2Q health. Over the past two years, the Investigaytors have conducted interviews with GBT2Q men who have enrolled in B.C.’s public PrEP program. The results of this study overwhelmingly show that although hurdles associated with the cost of PrEP have been largely addressed for GBT2Q men, several important barriers remain.

Family doctors sometimes unfamiliar with PrEP

For example, some GBT2Q men told the Investigaytors about challenges they experienced in speaking to their family doctor about PrEP. For those who approached their family doctors in hopes of accessing PrEP, some felt uncomfortable with the personal questions that were asked in order to determine their eligibility for PrEP. Most explained that their doctors were unfamiliar with PrEP. Time and time again, GBT2Q men reported that in order to get PrEP through their family doctors, they had to advocate for themselves and counsel their doctors about how to access PrEP, rather than the other way around.

As researchers, we also work with other groups who could benefit from PrEP, including people living in Vancouver’s Downtown Eastside who inject drugs. We are frequently struck by the low level of awareness about PrEP among this group: very few of these folks indicate that PrEP is something they would consider using, despite engaging in practices that put them at higher risk.

In our experience, when people first learn about PrEP, they often express highly stigmatizing attitudes and thoughts—an illustration of the continuing influence of stigma on HIV-prevention efforts. Indeed, prior to the rollout of PrEP in B.C., many of the GBT2Q participants in our research saw PrEP as promoting risky behaviour rather than as an effective tool for protecting themselves from HIV. Yet just a few years later, B.C. has witnessed widespread uptake of PrEP among GBT2Q men and big changes in PrEP-related awareness and attitudes. According to B.C. Ministry of Health figures contained in a March 2019 release, about 2,000 people sought coverage within the first six months of expanded PrEP access on January 1, 2018; that number grew to almost 3,300 by March this year.

Other groups need to be informed about PrEP

Although the increasing adoption of PrEP among GBT2Q men represents a huge success in B.C., we must ensure that the treatment benefits other groups in the same way, including people who inject drugs and people who engage in sex work. To date, other than those focused on GBT2Q men, there are few initiatives that offer information about or access to PrEP for people at risk of HIV. This must change.

Our work with GBT2Q communities has underscored for us the importance of targeted communication strategies in improving people’s knowledge about PrEP and addressing the persistent stigma against HIV. Recently, the Investigaytors developed a resource for people wanting to access PrEP. It provides information about the pill as well as resources to help guide conversations between patients and their doctors. It also offers strategies for self-advocacy, including ways to discuss PrEP with doctors who might not be familiar with PrEP or feel comfortable prescribing it right away. More community-driven initiatives like this will enable access to PrEP.

We also need to learn from previous situations in which the rollout of PrEP did not meet the needs of those who were poised to benefit from it. In December 2016, for example, two years before PrEP became publicly available in B.C., the federal First Nations and Inuit Health Branch made PrEP available to First Nations and Inuit people. Despite the availability, uptake was very low due to a lack of knowledge among communities and care providers.

Thanks to the publicly funded program in B.C., the scale-up of PrEP among GBT2Q men is meeting the needs of many in the GBT2Q community and preventing the onward transmission of HIV. This is a great start, but we must continue the hard work to make sure all those who could benefit from the protection offered by PrEP can access it. This can’t be accomplished without the communities that are most affected. The health system needs to engage them and to make sure that PrEP programming corresponds with their specific concerns and needs. As we forge ahead in the fight against HIV, community will be the cornerstone of success—and no-one should be left behind.