The elation that goes hand-in-hand with PHARMAC's decision to publicly fund the HIV-prevention drug Pre-Exposure Prophylaxis (PrEP) in New Zealand in 2018 means an inevitable deluge of questions about how and where to get hold of it, whether it’s right for everyone, and what it’s like to actually use the drug.
And that’s where New Zealand’s PrEP community comes in – through groups such as Facebook’s PrEPing NZ, where experts, doctors, current users and those who want to find out more about PrEP and its role in preventing the onward transmission of HIV can get together to ask questions, offer qualified advice, and share personal insights and experiences in a safe network.
Lead administrator Andrew Mackenzie says the direction of a lot of conversations on PrEPing NZ has changed since the New Zealand-specific community was set up in August 2017 - from advice to getting on the country’s PrEP trial and information about Gilead Sciences’ drug Truvada, to advice and experience around importing the much cheaper generic versions of PrEP, to now unravelling the specific course of action for eligible patients to receive Truvada from pharmacies throughout New Zealand at the cost of a normal prescription from March 1 2018.
“The community came together quite quickly,” Andrew says. “PrEP had already been around for a while and so there were a lot of people who were already importing it, or who'd had it overseas before coming to New Zealand, all of whom could share their experiences. And then there were also a lot of people who had done a huge amount of research – including a couple of doctors and myself and a few others – so we could provide answers from day one.
“It was important to have that expertise ready to go, otherwise we were worried that if we couldn’t provide answers straight away, people would go elsewhere and there’s still a lot of misinformation about PrEP out there on the web.” So what are the kinds of help people who are interested in PrEP can learn from the Kiwi PrEP community?
1. The real-life experience
As Andrew puts it, “a doctor can reel off his spiel, but it’s very different to having a first-person encounter." Terms like nausea and fatigue are bandied around the internet and on side-effects sheets, but actually hearing first-hand from people who can talk about having an upset stomach for a couple of days or feeling like they had jet-lag for a week shows that the side-effects only affect a minority, can usually be managed and will almost always pass.
2. The practicalities of importing
When Truvada was around $1000 for 30 pills, many Kiwis turned to overseas sources of generic versions of the drug which could be imported for around $50 per month. Issues such as delays, how to complete importation documentation to ensure the drug got through customs, and finding trusted sources were all dealt with – even allowing PrEP users to hook up with other users to help bridge periods when they ran low on their medication because of delays.
3. Access to trusted news and information
Because of the makeup of the PrEPing NZ community there are plenty of trusted people – such as Auckland GP Torrance Merkle – who can filter through the jargon and occasional misinformation to find great articles from overseas or around New Zealand and help hook up those carrying out much-needed trials, events and studies with those who can help.
4. Fast and accurate reaction to the new PrEP funding
Andrew is first to admit that PHARMAC's announcement brought not only excitement and elation, but also a certain amount of surprise. “We thought it might be a five or ten-year fight, so we’re really happy that it was surprisingly easy,” he says. “It’s really nice when you don’t have to dig your heels in and push back with protests or more petitions – it shows what we’ve always said, that funding PrEP makes sense.” The new funding model, though, will likely experience some “teething difficulties” around GP awareness, having enough stock for the 600+ Kiwi PrEPsters, and spreading the word around the process for having prescriptions approved, Andrew says. With so much to get your head around, having a qualified and knowledgeable crew available to help at the other end of a few keystrokes is invaluable.
5. Safe support
PrEPing NZ is the ideal starting point for people who might not be sure if they want to go on PrEP but who want to know what people are talking about, and what their concerns or queries might be. Andrew says that the group has found many Kiwis who are joining aren’t necessarily those with a high risk of an HIV diagnosis – it’s also people who have got an anxiety around HIV. “For those who have a huge amount of anxiety around sex because of HIV, they find they're able to ask a lot of questions in a safe setting, and it helps with their anxiety.”