No more excuses: people have the right to know
The time for excuses is over. It’s very; very clear that antiretroviral treatment works and, if taken appropriately, drastically reduces the risk of transmission to zero. This World AIDS Day, 2018, is a wakeup call to all to know their status. It’s difficult to overstate the power of this message for people with HIV (but do not know their status) because it changes what it means to live with HIV. It opens up social, sexual and reproductive choices we and our sexual partners never thought would be possible.
It encourages all of us to start and stay on treatment so as to keep our sexual partners healthy. It’s an opportunity to transform how we see ourselves, how we’re perceived by our families and friends, by our current or potential sexual partners, and by people in general. While this message is primarily focused on the individual, it provides those of us working in the field with a new tool for advocacy. It can raise broader public awareness of HIV, help reduce stigma towards people living with HIV, undermine self-stigma, increase testing, motivate early initiation of treatment, and improve treatment adherence.
It also offers a strong public health argument for the provision of, and access to, testing, treatment and care. It also provides an opportunity to imagine a community without boundaries between those who live with HIV and those who don’t, a community where the lives of all are valued.
I’ve worked with people living with and at risk for HIV for some time. While we still have no cure, I’ve been witness to two remarkable scientific developments. The first happened when researchers, working alongside community members, announced that combination antiretroviral therapy had changed HIV from a virtual death sentence to a chronic, but manageable condition.
The second came more slowly. There’s been increasing evidence that antiretroviral therapy also reduces HIV transmission. By 2016, there was sufficient evidence that enabled activists to say definitively that “Undetectable equals Untransmittable” (or “U=U”). In other words, HIV transmission between sexual partners does not occur when the viral load is undetectable. We must hasten to emphasize that we continue to encourage the use of condoms notwithstanding this remarkable development.
Yet, getting this message of freedom and hope to people who need to hear it has been one of the greatest challenges HIV advocates, such as I, have faced. Maybe it’s not surprising, though. Saying someone with an undetectable viral load cannot pass on HIV to my sexual partners, with or without a condom, is radical! It undoes years of previous messaging that saw people as vectors of disease from whom the public had to be protected.
We now know that past messaging was inaccurate and, as a consequence, has to change. And while the new message of U=U must reach far more people than “Treatment as Prevention” ever did, the concept incorporates some complexities that may prevent it from reaching a wider audience. But people have the right to be informed about U=U, and it’s our responsibility as service providers and health care practitioners to disseminate this information in a way people can understand and use.
That’s a responsibility that many of us will need to take seriously. All too often, I hear in the course of my work that people have never heard about U=U, or heard about it from a friend or from social media, even from their doctor or their local clinic. I’ve heard that frontline workers hardly talk with their clients about treatment and its life changing capabilities. It only shows that senior managers or leaders of society have deserted the battlefield.
Denying this information to people who need to hear it, keeping them in the dark because of our fears that they may not fully understand it, or may misinterpret it, or because we believe they have more important things to think about, or because we ourselves are not completely on board with the science, is, frankly, unethical and a violation of their rights. And there is a word for that: gatekeeping. And it has to stop, because it’s harming people.
In the words of Nic Holas, a prominent Australian HIV advocate who spoke at the International AIDS Conference in Amsterdam, “Zero risk has to mean zero excuses. If you sit on this information and don’t share it, you’re killing us.” Let me fill you in! The U=U slogan embodies the idea of treatment as prevention. This idea has been around since at least 2010, but since the easy-to-grasp U=U slogan is now established, the concept must be firmly pushed into the public sphere and must be a major talking point in the community this year, especially among the youth.
In line with this year’s (2018) World AIDS Day – on 1 December 2018 – theme “Know your status”, U=U is a simple but hugely important message based on a solid foundation of scientific evidence. It must influence public opinion, causing more people to want to know their status and those with HIV (and their friends and families) to comprehend that they can live long, healthy lives, have children, and never have to worry about passing on their infection to others.
The clarity of the message will make it easier to promote the undeniable benefits of treatment, which will encourage more and more people with HIV to seek treatment, bringing the HIV community one step closer to achievement of an AIDS Free World and to complete elimination of the entirely unfair and outdated stigma still faced by many people living with HIV today.
As service providers and healthcare practitioners, we, and the organizations that employ us, are uniquely placed to bridge the gap between the science and community engagement on U=U. As individuals and organizations who are directly supporting people living with HIV and at risk of HIV, we must nurture and guide conversations.
“Undetectable equals Untransmittable” is a new reality that comes with complexities. It’s our job to communicate and facilitate engagement in this new landscape. Therefore we must embrace the science of U=U and celebrate the message it sends: people who are undetectable cannot transmit HIV to their sexual partners!
Chris Maxon works for the Department of Health, Kwazulu-Natal and writes in his personal capacity.