This week, PositiveLite.com is focusing on Post-exposure Prophylaxis, or PEP — medication that can help prevent HIV after a possible exposure. On Tuesday and Wednesday, two Toronto gay guys with experience of PEP will tell us their personal stories. Today, to kick off the series, I talk with Duncan MacLachlan, the Director of Community Health Programs at the AIDS Committee of Toronto (ACT), to find out about PEP, its effectiveness and its availability.
John McCullagh: Duncan, let’s start with the basics. What is PEP?
Duncan MacLachlan: Post-exposure prophylaxis, or PEP for short, is anti-HIV medication that’s given to folks who’ve been assessed as having had a potential exposure to HIV. It’s a 30-day course of treatment that has to be taken as close to the exposure event as possible, but no later than 72 hours afterwards.
Just to be clear, PEP is different from PrEP, right?
Yes, it is. The key difference is the “post” and the “pre”. Both involve taking anti-HIV drugs. PEP is a four week dose of anti-HIV medications that can potentially stop HIV infection after exposure. PrEP, on the other hand, is the use of the drug Truvada to lessen the risk of HIV in uninfected individuals who are at high risk of HIV infection and who may engage in sexual activity with HIV-infected partners.
ACT currently has a PEP campaign focused on gay and bi guys and other men who have sex with men. Why did you develop a campaign about PEP at this time? What’s different now? Have things changed?
John, we pride ourselves on having up-to-date, evidence-based, reliable and trustworthy information on all matters related to sexual health and this was an area which, quite frankly, didn’t meet our standard. PEP’s been around a long time, but the information we had available was incomplete and out of date. That was the genesis of it. But there were a number of other factors. I and others were getting calls, often on a Saturday or Sunday morning when doctors’ offices are closed, from guys who felt they’d been exposed to HIV wanting to know what they can do, where can they go. We were getting those types of calls with increasing frequency. At the same time, we were having more conversations, there was more research, more in the media about PEP and PrEP and the whole notion of treatment as prevention.
Right. And I don’t think I’ve ever seen a public health campaign in Toronto around PEP.
That’s because there’s never been one, unlike in other places. And what’s being done elsewhere, for example by Health Initiative for Men in Vancouver, inspired us to act. So we decided to focus on really practical information, like where do you go, what kind of questions do you ask, what kind of things are going to help you get better and faster service when you go into an ER.
That’s what I want to ask you about too! So supposing I’m a negative gay guy who feels I’ve recently had, like last night, an exposure to HIV and I’m worried about that. How would I go about getting PEP?
Well, the most common way in Toronto is to go to emergency at St Michael’s Hospital. That’s where most of the referrals are made to because downtown St Mike’s has an HIV clinic and they have the expertise and knowledge. They are providing the best, the most favourable formulation of PEP, because there’s no standard of care in this area. Some hospitals are giving older medications…
Yes, with more side effects. And so St Mike’s is considered to provide the best service as well as having a good reputation in this area. You can also go to your family doctor or sexual health clinics but the challenge is many people need to access PEP outside of office hours. Then again, a lot of people don’t have a family doctor, or a family doctor they feel comfortable talking with about their sexual health. So the default becomes the hospital emergency department. The key, though, is getting seen quickly; every hour counts.
So how many hours do I have after a potential exposure?
Up to 72. There is some variance in terms of the research and guidelines but best outcomes are achieved when treatment is started as close to the event as possible. Even after six hours the potential benefits and efficacy go down and that’s simply a function of the fact that, if you’ve been exposed, the virus is inside you. It’s doing its thing. It’s starting to replicate, it’s starting to go further into your system. Generally, if it’s after 72 hours, it’s too late.
So time really is of the essence.
So, what happens then, at the hospital, at the doctor’s office, when I go there? Do I go into emerg and how will I be treated?
That depends on where you go. But it’s very important to identify right away why you’re there. And you should be triaged as a priority. And if you are not you should ask to be because, for the reasons we just talked about, you should not just sit there and wait.
So now, I’m in front of the doctor, what do I have to tell this guy?
He’s going to ask you a bunch of questions related to what you were doing, because they need to determine your level of risk. He’ll ask you about the status of your partner in terms of HIV, which you may or may not know. But the more information you have about your partner the better, including whether, if they are HIV-positive, they’re on treatment and have an undetectable viral load. They’ll also ask you about the nature of the activity to better determine the level of risk associated with it. Those questions are really important because sometimes people think they might have been at risk but, when they lay it all out, the risk in fact was very low. In such cases, PEP would be optional or the doctor may not recommend it even though you think you should have it.
So, I’ve got to be pretty cool about talking with the doctor about what I did, like if I got fucked up the ass without a condom. Or if I was partying and playing with a bunch of guys in somebody’s house, or a bathhouse, I’ve got to say that, right?
Absolutely. It’s part of the risk assessment. I do recognize that can be a challenge, though. Most guys who’ve gone through the experience have told us that what seemed to be helpful was going with a friend, having that kind of support, because going to emergency is never a great experience at the best of times.
So, if the doctor thinks that going on PEP would be a good idea, will they give me medication then and there or will I have to go to a pharmacy to get a prescription filled?
Both. You’ll get a starter kit and, although there’s no standard of care in Ontario, it’s usually for four or five days’ supply, enough to get you started. But you’d then go to the pharmacy with your prescription for the balance of the medication you’ll need to take for 30 days in total.
How much does the medication cost?
Between $900 and $1,300, depending on the medication prescribed.
Wow, that’s expensive!
It is. And that raises the really big issue with PEP in Ontario in that it’s not covered for what’s called non-occupational exposure, although it is for occupational exposure (for example, a nurse who sustains a needle stick injury) and for sexual assault victims. That’s a very low standard, compared to other jurisdictions both within Canada and internationally.
We at ACT feel really passionately about gay men’s health. So part of our PEP campaign is a plea for universal coverage in Ontario. We think that no Ontarian should receive second class treatment, compared to other provinces in Canada. And that treatment as prevention, in this case, it’s proven, it works, it’s available, it’s covered for some people in some situations and not covered for others. We don’t think that’s fair and we and our colleagues across the province would like to see that changed. We’re certainly going to continue with this campaign and make sure that we can do everything we can to get the information out there to guys. But ultimately, we need to improve access. We need to have a standard of care and that would be set by the province, the ministry of health, so we need a standard of care so that when somebody comes into emergency they are given the priority they should be given. And that we improve access and affordability for people.
Tell me more about the need for a standard of care for non-occupational exposure in Ontario.
In Ontario, the decision whether to provide PEP is made by the healthcare provider on a case-by-case basis. Many healthcare providers in the province are unaware of non-occupational PEP, are not trained to provide PEP, and may be unwilling to provide it. This means that people may be assessed differently, kept waiting longer, or prescribed older anti-HIV drugs with more severe side effects that impact people’s ability to adhere to the treatment. PEP for non-occupational exposure is an accepted clinical practice in many jurisdictions. In Canada, British Columbia, Alberta, Saskatchewan, Manitoba, Québec and Prince Edward Island all have standards of care protocols in place. Internationally, the US, the UK, Australia, the Netherlands, France, Switzerland, Spain and Denmark, among others, have protocols.
Can I access PEP more than once?
Yes, there are no problems with using PEP more than once. But some medical providers may be concerned about providing PEP repeatedly if they see a person is consistently using PEP as their first means of protecting themselves and not using other means that are possible for them to access, such as condoms.
I just want to go back to the side effects now, Duncan. You said there are different kinds of treatments that can be prescribed for PEP, hopefully the less toxic meds. Many people, when they first go on anti-HIV drugs, experience some side effects which may go away after a while but if you are just taking PEP for a month then you could have severe side effects, or some side effects, throughout the whole time you’re taking PEP. What are some of the side effects one might expect to experience if one is taking PEP?
Well, John, we don’t have a lot of information about that, because people are being prescribed different drugs. But generally speaking, it’s a minority of people who have severe side effects - nausea, fatigue, those kind of things - and for most people they go away within the first week or so. There’s usually follow-up built in so there’s a check-in to see how people are doing, and that’s important. So it’s not just that you leave and are on your own for the month.
And I suppose before you are prescribed PEP you’d be given an HIV test to make sure you’re not already positive.
Yes. With the proviso, of course, that there’s a window period before any infection or its antibodies would show up.
And presumably at the end of the course of treatment and maybe some months down the road?
Duncan, this has been a most enlightening conversation about PEP and ACT’s campaign. Thank so much for taking the time to talk with PositiveLite.com.
My pleasure, John.
This interview has been condensed and edited.
Tomorrow, Raj tells us about his PEP experience after having been potentially exposed to HIV at a sex party.