When Dane Stewart visited a walk-in clinic in Montreal to get a prescription for a new drug shown to be over 90 per cent effective at preventing the transmission of HIV, he came to a shocking realization.
He knew more about the medication than did the doctor, who ended up referring him to a specialist.
“He didn’t know how to assess the risk factors,” said Stewart, a Master’s student at Concordia University.
Pre-exposure prophylaxis (PrEP), known commercially as Truvada, was approved by Health Canada for use as HIV prevention in February of this year. But because the drug isn’t yet covered by all health plans, cost is a barrier to access for some while in other cases, lack of knowledge is the problem.
Three decades ago, Canadians living with HIV/AIDS took to the streets in protest, demanding access to life-saving medications and speaking out about discrimination and stigma. With World AIDS Day approaching on Dec. 1, this week provides an opportunity to reflect on activism and the strides that have since been made to treat and prevent the virus.
While the PrEP approval was a victory in some respects, there are significant barriers to accessing the drug, said Khaled Salam, executive director of the AIDS Committee of Ottawa. Without a private insurance plan or subsidy from provincial drug programs, Truvada costs between $1000-1300 a month. Quebec is currently the only province that offers full coverage.
An Ottawa man who uses PrEP and identifies as gay, who preferred to remain anonymous, said some of his friends have encountered doctors who had no idea about PrEP, or seemed embarrassed to broach the subject of HIV prevention in general.
Of the stigma associated with seeking PrEP, he said, “It’s hard for gay men to get care that is culturally competent, celebrates our relationships, and is sex-positive.” While he said his experience accessing the drug was relatively smooth, he attributed this to his personal expertise in the area of HIV prevention.
This disconnect among health care providers may accentuate the stigma that many people at risk of contracting HIV already feel.
Matthew Numer, an assistant professor of Health Promotion at Dalhousie University, said it’s understandable some physicians may not know a lot about PrEP because it is new. But he said overall, physicians need to be talking with their patients about PrEP as part of a larger HIV prevention strategy, not the sole tool. The issue with the current scenario is that it “forces the person asking for it to be knowledgeable of how to get it,” he said.
A decent benefit plan from an employer will bring the price down to around $200 a month, but Salam said that overall, cost is still the biggest barrier – especially for the most vulnerable populations. Though he said the drug’s approval is a good step forward, ultimately, “There’s no point in approving something if you’re not making it fully accessible to the people who really need it.”
And the people who need PrEP most, namely men who have sex with men, injection drug users, and sex workers, may have the hardest time accessing it because of stigma, Salam explained. “The one thing that unfortunately still hasn’t changed in a way that we would like for it to change, is the stigma that’s attached to HIV. And I definitely feel that that stigma is a driving force in why certain drugs become readily available, versus why other drugs don’t,” he said.
The unfortunate reality is that PrEP may be stuck in the same process many drugs go through before becoming more affordable, said Dr. Jonathan Angel, a senior scientist in the Chronic Disease Program at the Ottawa Hospital. “In two years we’ll be talking about, perhaps how it long it took, but it’ll be available and will be widely prescribed,” he said.
But bureaucracy and cost aren’t the only things in the way of making PrEP more widely accessible. Gaps in physician knowledge about PrEP is also an issue that can make it difficult or uncomfortable for a patient to express interest in taking the drug, said Paul MacPherson, a researcher and physician who runs a PrEP clinic in Ottawa.
“In medical school, you know, we spend next to no time on LGBT health,” he said. This dearth of knowledge is coupled with some patients’ reluctance to disclose details about their sexual practices, he explained. MacPherson indicated that in the Ottawa area, about a quarter of men who have sex with men – the primary users of PrEP thus far – will not disclose this to their primary care provider, largely because of stigma. “So it’s a big systemic problem – on the part of our medical schools and our training, how much emphasis health care providers put on it, and the LGBT community’s willingness to disclose it,” he said.
This can be a problem particularly if there are limited places where PrEP is readily available. In Ottawa for example, Salam indicated that there are only two places to get PrEP – MacPherson’s clinic being one of them. He said that along with PrEP becoming more widely accessible, we have a shared responsibility as a society to end the stigma of those living with HIV, and the vulnerable populations looking to prevent themselves from contracting it. His committee is part of various working groups who are lobbying the government and pharmaceutical companies to make the drug more affordable.
Just like HIV treatment, prevention is a cohesive effort that both Angel and MacPherson said requires broader conversations about sexual health between physician and patient. If this process is done properly, MacPherson said that, because of the reduced fear of contracting HIV, the mental health benefits associated with taking PrEP can be remarkable. He said in his experience, patients are “able to more securely engage in sex and enjoy their sex, and walk away from that with considerably less anxiety than they’ve lived with up until now. And I think that’s a real benefit to people.”