New Research Study Focuses on HIV Prevention Drug in Ontario

By Neil Armstrong

Truvada PrEP (Pre-Exposure Prophylaxis)

A new research study on pre-exposure prophylaxis (PrEP), a method of preventing HIV infection through the regular use of antiviral medication, is aiming to enroll 1250 patients using PrEP in Ontario.

 Jack Mohr, research coordinator of the Ontario PrEP Cohort Study at

St. Michael’s Hospital in Toronto says the team is interested in getting information about PrEP and its study out to communities impacted by HIV.

PrEP has been slowly rolling out in Canada over the past several years, but has recently become more accessible because of the release of generic drugs and public coverage by provincial governments in Ontario and British Columbia.

“I think we’re at an interesting point where PrEP is becoming more widely available. It’s been something that’s been talked about for a while that the price of it was a major barrier for a long time. And we’re seeing that change particularly in Ontario so PrEP’s now available through the Ontario Drug Benefit Program so all sorts of different people would potentially have access to it for no cost.”

This includes young people who are on OHIP+, people who were accessing Ontario Works or Ontario Disability Support and there is coverage through Trillium for those who don’t have drug coverage.

Mohr said this is likely to result in a real ramping up of PrEP and there are questions about what barriers might continue to exist for people to access it and what the impact of PrEP is going to look like for folks.

“It’s really a great time to see how is it being used across the province by a sort of wide and diverse swath of people.”

The study, which is a community-based research project, examines how PrEP is being used across Ontario.

The research coordinator said PrEP is primarily being used by gay and bisexual men but it really has potential to benefit anyone who might be at risk for HIV.

“We’re really hoping as part of this project to do a lot of outreach to get the word about PrEP out to different communities that might benefit from it and then subsequently to have representation of those folks in the study so that we can see what the impact of PrEP is for African, Caribbean and Black (ACB) communities, for women, for transgender folks, and I think that will also help us answer certain specific questions different communities might have about PrEP.”

Mohr noted that one challenge they have seen is that many communities most impacted by HIV are not aware of PrEP and do not know that it is an option for them.

This is partly because the messaging about PrEP has been geared towards gay and bisexual men.

The research team includes members from organizations like the Black Coalition for AIDS Prevention (Black CAP), and African and Caribbean Council on HIV/AIDS in Ontario.

Shannon Ryan, executive director of Black CAP, said the agency works with communities for whom conversations about condoms and HIV prevention are still a new thing so complexities of PrEP are new to many of the people they work with, with few exceptions.

“Increasingly, black gay men that we work with are building their awareness about PrEP. Secondarily, I think folks who are in current serious relationships who are black also have a sense of what PrEP is as well. We work with a lot of HIV positive men and women who are heterosexual who have negative partners who often having conversations about PrEP.”

Ryan said generally speaking there is a lack of awareness about PrEP in the broader black community.

Mohr said a lot of the existing clinical trials focus on gay and bisexual men but he also thinks word about PrEP has not trickled down to other folks quite as much.

He said even though the drug has been around for a while, it’s relatively new and not a lot of healthcare providers know about it and while a lot of social service providers are talking about it, the word has just been slow to get out about it as an option for people.

Mohr said they will be enrolling patients through a number of providers that are linked to this study.

These include healthcare providers in Toronto, Windsor, London, Guelph, Ottawa and Hamilton.

“Folks who are either taking PrEP or interested in starting will be told about this study and then be able to enroll and then we’ll be sort of doing follow-up appointments alongside their regular healthcare for PrEP.”

The research study will look at what impact PrEP might have on condom use, and by extension, rates of other sexually transmitted infections (STIs).

“We’re interested in looking at how is it impacting people’s sexual health and overall health. We’re curious to know what people’s experiences are on PrEP so we have a lot of questions about what people’s expectations are of taking PrEP and then also what’s their actual experiences over time.”

Garfield Durrant, MSM prevention coordinator at Black CAP, said this research will bring greater awareness to the public.

He believes people will also want to discuss it with their service providers to know more.

Ryan said one of the values of the study is that as they are working to promote the feasibility and access to PrEP in the broader black community they will have a strong foundation of research upon which to do that.

“This research will help us identify some of the questions and concerns that members of our community who could be using PrEP have as they’re considering that. So this helps us think about how he approach conversations with these folks, how we talk about issues of access which is often an issue for black communities around how we access health-related support.”

Ryan said the study will also give them good language to use to distill things down to very simple messages that members of the community are ready to hear.

He said condom use in the black community, whether it’s around black gay men or among black heterosexual folks is amazingly low.

“We’re talking about 15 to 20 per cent of people who are consistently using condoms,” said Ryan, noting that PrEP gives people another prevention tool to consider other than condoms.

This provides another opportunity for Black CAP to engage people in HIV prevention.

Ryan said they also recognize some of the barriers that those in the ACB communities will experience to access PrEP.

It’s expensive and often requires that clients have good health coverage or are able to access certain benefits to do that.

“Many folks in our community are not able to do that which goes back to the issue of health equity in healthcare sector as well. We often experience lower outcomes than everybody else and I think that would be the case with PrEP as well.”

He said while they are promoting PrEP in terms of use by individuals in the community, they also have to be pushing on the other side around structures and institutions that will be administering PrEP and create access to PrEP around ensuring that they are removing barriers to PrEP for members of the community.

Meanwhile, Mohr said there is some interesting existing research that points towards PrEP potentially reducing people’s anxiety about HIV, maybe making them more open to people living with HIV. These are things they would like to investigate more.

 “We know that for all sorts of different populations who might benefit from PrEP there’s barriers to accessing healthcare so we’re curious to see whether PrEP might be a way to re-engage folks in healthcare generally.”

Mohr said there’s a really robust healthcare program associated with PrEP.

“It’s not just taking a pill, it’s getting tested for HIV and other STIs every three months. It’s getting to regularly see a doctor and talk about sexual health and other issues that impact sexual health in a way that people might not experience with healthcare providers a lot, so there’s a potential for PrEP to be a gateway to improve healthcare access generally.”

They also know that there might continue to be barriers for people, for example, with public coverage because Canada does not have a pharmacare plan that covers everyone.

He said there are some service navigation issues there and also being able to maintain those regular appointments and maintain regular medication.

These can be a challenge for people if they are unstably housed or if they don’t have steady income so the research is trying to see where people might continue to fall through the gaps even when they are aware of this medication and even if they have been connected to a provider already.

The out-of-pocket cost for PrEP for someone who has no coverage is $250 per month for some of the generics.

That is about a quarter of the price of what it had been as a name brand but obviously that is still a really significant cost, said Mohr.

There are also a lot of different coverage options that people would have to navigate.

 Ontario Works might be covering many people who are lower income but if someone is working and earning some income but not a significant amount, they might be navigating the Trillium Plan that covers some drug costs, he said.

A newcomer in the country would encounter a lot of different healthcare plans covering different types of newcomers, some of them provide drug coverage; some don’t.

Mohr said service providers are ramping up their knowledge in that area to try to make this as easy as possible for people to access so that they are not having to navigate these complicated systems on their own.

He said PrEP is a good option even for folks who are regularly using condoms because they know that even when folks regularly want to use condoms they don’t necessarily always use them.

“We’ve seen a trend over the past several years even prior to PrEP’s entry in Canada that people aren’t always using condoms,” said Mohr, noting that in that landscape PrEP might actually be beneficial for people because part of using it is seeing a healthcare provider regularly and talking about their sexual health.

“I think we might see a lot of folks who are interested in PrEP who go to talk to a service provider who recognize maybe condoms actually make more sense for me than PrEP. Maybe my risk isn’t that high generally and condoms would make more sense than having to take a medication every day.”

Mohr said there is an opportunity that PrEP might actually have people re-engaging with more traditional types of sexual healthcare as well.

The overall objective of the research study is to improve access to PrEP with this information.

“So by transforming the services and the delivery of PrEP currently by being able to say we see that there is this access barrier say for African, Caribbean and Black communities, or for transgender women, and this is how you need to change how those services are provided.”

They also want to have a real link with community so that this research does not land in academic settings or clinical settings.

As a result they have a very large community-based research team made up of people from HIV organizations across the province.

“We’ll be doing a lot of outreach and educational events as data is coming out of this study so that we can start to answer some of those questions that folks have about PrEP.”

The recruitment will start at St. Michael’s Hospital first and as other sites get their ethics approval and undergo staff training they will be rolling out across the province over the next few months.

[A shorter version of this story is in the North American Weekly Gleaner, Feb. 22-28, 2018.]