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Mental wellbeing

Facing our fears: What does news of a possible PrEP failure mean?

In light of recent reports of a person becoming HIV positive while using PrEP, our community’s collective response can inform the future of HIV prevention and sexual health promotion in Australia. While HIV/AIDS organisations and community groups are leading the way to allay public concerns, we address some of the questions surrounding this unusual event.

Following recent reports of a person on the Victorian PrEPX study seroconverting and becoming HIV positive, inevitable community dialogue has been commenting on this extremely uncommon situation. Among the mixed emotions and beliefs, there seem to be two underlying factors that shape the discussion:

  1. PrEP offers hope, but many of us are still frightened of what we believe it means to become HIV positive
  2. In spite of all our fears, we can still strive to be compassionate and hopeful

Remember that somewhere in Victoria one person is the subject of our social commentary. If you feel compelled to join in, consider your words with compassion.

While specific details of facts and data surrounding this case are not yet available, we investigate what this news means for us now and moving forwards.

Why are many of us so inquisitive about this potential PrEP failure?

PrEP is a biomedical HIV prevention strategy already protecting more than 100,000 people worldwide. So it’s no wonder any reports of someone becoming HIV positive while using PrEP will come under close scrutiny. Any desire to seek out more information simply serves to demonstrate how so many of us are becoming more invested in protecting ourselves and our community.

“Infection during PrEP use is rare. If infection occurs, it can be treated. In the absence of PrEP, HIV infection is much more common.”

Professor Robert Grant, M.D., M.P.H., is the lead investigator for the pivotal iPrex study that first confirmed PrEP’s high level of efficacy. Following the second case of a person acquiring HIV despite consistent use of PrEP in October 2016, his words from an interview still hold relevance today: “Infection during PrEP use is rare. If infection occurs, it can be treated. In the absence of PrEP, HIV infection is much more common.” he goes on to say “Early adopters want guarantees. I think curiosity about any failure of PrEP is healthy, because it is so extremely rare. There are also some anti-PrEP attitudes that are rooted in investment in other prevention strategies, fear of intimacy, homophobia, fear of disruption and trauma. These processes are expected and call for open and compassionate discussion.”

What do we really know about the Victorian case?

Making headline news on May 22, 2017 in an article for The Age, specific details of the case are not available at this time. What we do know is that a person has tested HIV positive while participating in the PrEPX study.

“Speculation leads to gossip and rumours, which do nothing more than fuel HIV stigma. Anyone who tests HIV positive, regardless of the circumstances, deserves compassion, care and dignity and their right to privacy must be respected.”

PrEPX is a research study to examine how expanding the use of PrEP impacts the rates of new HIV infections in Victoria. As with all PrEP studies announced or already underway in Victoria, New South Wales, Queensland, South Australia, the Australian Capital Territory and Western Australia, the purpose of these studies is not to evaluate if PrEP works. We already know that it works extremely well, which resulted in the Therapeutic Goods Administration (TGA) approving it for use in Australia in May 2016. The studies are observing the use of PrEP in a real world setting, as well as being an important and affordable way of getting PrEP to people who need it the most.

In a media release from the Victorian AIDS Council (VAC), two possible causes for the Victorian case are mentioned:

  1. If a person is not adherent to their PrEP regimen (taking the prescribed dose regularly), it is possible that they would not be protected against acquiring HIV;
  2. If a person comes into sexual contact with a person living with HIV who has a detectable viral load together with a strain of the virus that is resistant to PrEP medication, it is possible (although extremely rare) that they might acquire that viral strain of HIV.

While these statements are grounded in science, Brent Allan, CEO of Living Positive Victoria offers a very human perspective: “We don’t know how HIV transmission has occurred and it’s unwise to speculate,” he goes on to say “Speculation leads to gossip and rumours, which do nothing more than fuel HIV stigma. Anyone who tests HIV positive, regardless of the circumstances, deserves compassion, care and dignity and their right to privacy must be respected.”

Why was this announced before we have answers?

It might seem unusual for news of this nature to be released without a detailed understanding of how it occurred, or scientific evidence. Patient confidentiality is of utmost concern to healthcare professionals and clinical study investigators.

However, rumours of this case began circulating on social media and were picked up by mainstream journalists. Early media releases from HIV/AIDS organisations distributed on community forums play an important part to reassure an already concerned community. And more importantly, the media releases reiterate advice from clinicians urging PrEPX participants to continue using their PrEP.

“It is important that people enrolled in the PrEPX study continue to take their medication,”

Lead investigator on the PrEPX Study, Associate Professor Edwina Wright says: “It is important that people enrolled in the PrEPX study continue to take their medication,” she goes on to add “Our researchers are reviewing the clinical details of the participant who tested positive. There has been no confirmed case in Australia of a person on PrEP being infected with drug-resistant HIV.”

What about PrEP and HIV resistance?

We know that PrEP doesn’t offer 100% protection against acquiring HIV. While some community discussion may focus on bringing attention to this, Dr. Howard Grossman made a statement following previous reports of a man becoming HIV positive as a result of acquiring multi-drug resistant HIV last year.

In this article he states: “Two cases out of perhaps 100,000 people is a very low failure rate. PrEP is still the most effective tool for HIV prevention we have ever had. Every scientific paper on PrEP has shown it to be less than 100% effective. Even in the Partners PrEP study, where no one got infected over the course of the study, mathematical modeling predicted up to a 4% infection rate if patients were followed for 10 years”

What’s important to focus on here is that despite an extremely small number of reported cases of people becoming HIV positive while using PrEP, there are more than 10,000 people in Australia using PrEP, and more than 100,000 globally who remain protected and HIV negative.

“Two cases out of perhaps 100,000 people is a very low failure rate. PrEP is still the most effective tool for HIV prevention we have ever had.”

Strains of HIV that are resistant to the two antiretroviral ingredients used in PrEP are extremely rare. In the extremely unlikely, but not impossible event that someone acquires HIV of this nature, it would mean their treatment plan would involve different HIV medications that didn’t use Tenofovir or Emtricitabine, depending on the type of resistance.

Fortunately, there are more than a dozen other antiretroviral options available for use in Australia that may be suitable as treatment. Not only does that ensure the person’s long term wellbeing, but it can also help them maintain an undetectable viral load, with effectively zero chance of transmitting the virus onwards.

HIV transmissions only occur from people who do not have an undetectable viral load. That’s more often the case for people who don’t know they have HIV, rather than people who do. It’s why going for regular sexual health tests is important for all of us to do our bit in ending HIV transmissions.

What about condoms?

With reports of a potential PrEP failure, it’s understandable some people might find comfort in reinforcing their own beliefs around consistent condom usage. Even though messages of “you’re supposed to wear a condom” are all too easy to drop into social commentary, like it or not, not everyone uses them. With concerns over declining rates of condom usage since before the advent of PrEP in Australia, this isn’t news.

Anyone choosing one or more strategies from the range of HIV prevention options available is to be commended on doing their part to end new HIV transmissions.

Using any of these options is significantly more valuable and effective than not using any at all.

VAC’s Top2Bottom campaign covers a variety of risk reduction strategies, and Ending HIV’s How do you do it? campaign are important steps in redefining what “safe sex” is in an emerging world of biomedical options. Rather than attempting to pitch strategies against each other, what’s clear is that using any of these options is significantly more valuable and effective than not using any at all.

Where is support available?

Becoming HIV positive in 2017 doesn’t mean the same thing as it did at the start of the epidemic more than 35 years ago. Advances in treatment and testing have led to a significant increase in the life expectancy of people living with HIV.

This article notes that according to a study in The Lancet HIV: “…a 20-year-old who began treatment any time since 2008, now has an expected lifespan, about 78 years”, making life expectancy closely comparable to that of an HIV negative counterpart.

Even with this firmly in mind, our anxiety over acquiring HIV can be crippling to our mental wellbeing. Furthermore, fear fosters a stigma against the virus and people who live with it.

PrEP might not be a perfect solution, but for now it’s still a highly effective additional tool for achieving this country’s goal of the virtual elimination of new HIV transmissions by the end of 2020.

Regardless of which HIV prevention strategy is right for you, remember that somewhere in Victoria one person is the subject of our social commentary. If you feel compelled to join in, consider your words with compassion towards everyone’s best efforts to protect themselves in ways that suit them.

If you’re HIV positive and in need of support, peer-run community group The Institute of Many (TIM) provide resources online, and via the TIM Facebook group or one of the local HIV positive organisations.

If you’re HIV negative and in need of support, peer-run community groups PrEP’D For Change and PrEPaccessNOW (PAN) provide resources online and via the PrEP’D For Change Facebook group and PAN Facebook group.

Regardless of your HIV status, you can also contact HIV organisations and AIDS Councils around Australia for further support and advice.

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