A Canadian university professor is in line at the United States border trying to get back to Canada from Blaine, Washington. The low vibrations of the car engine are taking the place of his heartbeat; faster and faster. The border patrol officer asks him why he was in Washington. He knows his reply will create the sort of intimacy with a stranger only achieved by disclosing his HIV status.
“I picked up some medication.”
“Why? What’s the medication for?”
“It’s a medication to prevent HIV infection.”
“They just want to see I have my prescription from my doctor and they’ll wave you through,” said Ivan Grabovac, the professor travelling to the U.S. to pick up PrEP, an antiviral medication used to prevent HIV infection.
Grabovac is an English professor at Mount Royal University who is currently on sabbatical, working on a project focusing on the cultural, political, and social implications of biomedical intervention, especially PrEP.
PrEP, or Pre-Exposure Prophylaxis, is when someone who is HIV negative takes medication daily to prevent an HIV infection from occuring. According to the Government of Canada website, high-risk groups include those who engage in condomless sex, men who have sex with men, individuals who already have an STI, among other groups.
Unfortunately, the cost for this medication is too high for many people who fall into an at-risk population.
But what would bring someone to drive three hours to Washington and three hours back just for this medication?
The answer: Cost
According to Grabovac, the manufacturer of the drug used for PrEP, a company called Gilead, would subsidize people’s use of the drug in the United States. Gilead’s patented drug Truvada, which is a mixture of tenofovir and emtricitabine, is the brand name for PrEP. The drug works by interfering with an enzyme called reverse transcriptase, which aids in the multiplication of the virus.
FACT: When an HIV pos (positive) person is taking antiretroviral therapy (ART), their viral load is decreased. When a pos person is taking their medication correctly, copies of the virus will not show up on standard viral load tests, rendering the virus untransmittable.
“When I heard about [PrEP] for the very very first time, my initial reaction was, ‘Wow, this could be cool’ and then I kept reading,” Grabovac says. He emailed an HIV support organization in San Francisco called Project Inform asking if there were any known cases where someone taking the pills properly had contracted HIV. They responded and said no.
“When I got that email, I got it at home, I stood up and I paced around. I couldn’t believe it, it completely floored me. That’s when it really really hit home to me that there is a pill that prevents HIV infection and it really works,” he says.
Registered nurse Alex Smith started a website called The Davie Buyers Club after his patients expressed interest in PrEP. He experienced more and more clients asking about PrEP once, twice, sometimes multiple times per day. The Davie Buyers Club site provides those in need of PrEP with step-by-step instructions for how to access the generic version of the medication for a mere $45 per month by having it mailed to the United States and driving across the border to pick it up; which is what Grabovac did.
In Calgary, there are activists who want PrEP to be more accessible to those who need it, Smith is one of them. According to Smith, a prescription for Truvada in Alberta is about $1,000 per month but Health Canada just approved four generic, cheaper versions of the medication in late July, 2017.
“It went from feeling that it was unfortunate that it wasn’t accessible to having encounters with patients who it was tragic that it wasn’t accessible,” Smith says.
Nurse Smith, who created the website to help people gain access to PrEP, walks into the Memorial Park Library’s boardroom for an interview about his website. He’s wearing a plaid shirt, which emphasizes his relaxed demeanor. He gets comfortable in the leather seat and in his soft, calm voice begins describing the first time he heard about PrEP in 2010 or early 2011 after the first clinical trial of PrEP, The iPrEx Study, results were released.
“It went from feeling that is was unfortunate that it [PrEP] wasn’t accessible to having encounters with patients who it was tragic that it wasn’t accessible.” - Alex Smith says.
“At first reading of that study it was actually not all that encouraging, I was a bit of a ‘PrEPskeptic’ initially believe it or not,” Smith says. He adds that the study showed a mere 44 per cent reduction in HIV infection among people who were actually taking the drug compared to a placebo.
As further analysis from that study came in though, those who had measurable amounts of the drug in their system showed a 92 per cent reduction in HIV infections. “Learning about all those different bits of key evidence really changed my mind about PrEP and got me thinking that it actually may be a very effective tool in the toolbox,” he says.
According to Smith, the first and second generics result in about a 25 per cent reduction from the $1,000 per month price point. Look further down the line and the fourth version of the generic might come to as low as $250 per month. Even though this is a significant price reduction, the cost is still be too high for many Canadians who may need this medication.
“I hope that $250, at that price point, would be more palatable to provincial formularies and governments to pay for … If you put 5,000 people in the city or even in the province on Truvada, that’s $50 million a year, that is no small chunk of change and of course that is important but I suppose the unfortunate reality is that there’s only so many resources out there,” Smith says.
He acknowledges that the cross-border method does not help everyone who needs the drug. Those who can’t afford the $45 per month cost may also have trouble accessing the border due to the lack of a vehicle; people with criminal records will also have trouble accessing medication if they cannot cross into the U.S. “I think we’re missing a huge, very important population so I think for those, PrEP should be covered for free. For others, for example, professional gay men, I don’t think it’s unreasonable to ask people to pay something for PrEP.”
Brook Biggin, founder of the Edmonton Men’s Health Collective (EMHC), says that the decision to fund PrEP publically would be made on a province by province basis. “The fact that you can’t import generics into Canada, if they loosen some of those restrictions, then that could make it easier for people to access PrEP from abroad,” he says.
The EMHC launched a PrEP Alberta website which is a step-by-step guide for people trying to access PrEP. “What we’re actually developing is a resource people can use in Alberta to access the drug here with as much ease and for as cheap as possible.”
“In any case, HIV is better prevented than even effectively managed so why don’t we do that?” - Alex Smith says.
According to Biggin, the Alberta government is not currently funding PrEP, which is why people have to navigate a complex system to access the medication.
“Cost is one thing but also there’s a lack of education amongst providers. A lot of family doctors have no idea what it is, and then if a patient explains it to them, ‘It’s an HIV medication,’ and family doctors are unlikely to be familiar or very comfortable with prescribing that type of medication.”
Even if you have prescription drug coverage, “The road to obtaining coverage can be quite complicated,” he says. “The Alberta government needs to move forward at determining a way to implement PrEP because it’s been proven to be extremely effective.”
According to Biggin there is already cost modelling in place that suggests that implementing PrEP at a lower cost within a particular percentage of a higher prevalence population could potentially save the government money overall. “If you can prevent an HIV infection, that can save, I don’t know, a million plus over the lifetime cost of treating somebody living with HIV.”
Ian Chapman, 61, refers to himself as pos, which means HIV positive. He created his first-ever Facebook account under a fake name with the purpose of joining the PrEP Facts Facebook group. He became interested in PrEP shortly after an incident when he disclosed his HIV positive status with a sexual partner.
“We were doing the things that were zero risk,” he says. After the gentleman asked if he was “clean,” Chapman, taken aback by that question, explained to him that when someone is being treated for HIV and taking their medication correctly, their viral load, or amount of virus in the bloodstream, is rendered undetectable, meaning that they can no longer spread the virus.
“He proceeded to call me a serial killer, he also did threaten to call the police if at any time he tested positive he would. I fought back with, if you do, I will demand a blood sample for phylogenetic analysis to prove that it could not be my virus,” Chapman says.
“My initial reaction [to PrEP] was like a lot of old pos guys.” He chuckles, “We’ve gone through the history of the drugs that were pretty challenging to take. Any retroviral I’ve ever been on, and when I changed it, there’s always been lots of gastrointestinal problems … So there was a piece of me that is ‘Oh yeah, sure, the first time they get the runs from taking this, they’ll run away.’”
When he joined Facebook, Chapman could not fathom that the group would welcome him onto the page because of the fear and stigma he has experienced since his diagnosis in the 1980s. He created a fake name using his last and middle names with a blank profile picture that he says at one point may have been a cartoon photo.
“There’s sort of an Internet mythology that I think also gets played up also in the media whenever there’s a case of non-disclosure in the media … that all pos people are mad as hell at the world that we caught HIV and we’re trying to get even by infecting as many people as possible. To which I say … ‘Really? Is that what you’d do if you caught it? Do you think the virus transmits a psychopathic intention as well?’” Chapman says.
“I turned into a real geek reading the [PrEP] studies. Somebody — a nurse in a mental health care program — once said I turned it into a full-time job because I was reading it eight or more hours a day, everything I could get my hands on,” he says.
Chapman now goes by his real name on Facebook, “I sort of ‘came out’ as a pos guy, just this spring,” he says.
- By Logan Peters