The U=U campaign (or Undetectable = Untransmittable) has stated clearly that people living with HIV who achieve an undetectable viral load will not transmit (or pass on) HIV through sexual contact with their partners. To better understand how this knowledge – and its recent embrace by scientists, healthcare providers, and community-based organizations – has impacted people living with HIV and their partners, we sat down with some members of our Positive Voices Caucus for a brief discussion on the matter.
As someone living with HIV, how does U=U impact your relationship with yourself, your sexual or romantic partners, and society at-large?
“With the proof of U = U becoming a reality and finally believing it myself (even though I have known for some time) it has changed my life in the most dramatic way possible. It has removed self-stigma and fear from my sexual relationships for both me and my partner(s). The fear of transmission from my initial diagnosis cost me relationship after relationship, as intimacy was sacrificed in turn for the safety of partners and to ease the personal fear of transmitting HIV to someone else. That has changed now.”
“I don’t think society has been impacted much yet. I don’t think it has been communicated strongly or widely enough. And the truth is, anything to do with U=U will remain a battle for the truth. Anyone who watched the news about HIV in the 80’s will not soon forget what they saw and were told. It’s hard to reverse that perception.”
“As a person living with HIV, U=U is a new lease on life, enabling me to pursue a happy relationship with a person of my choice without lies, deceit or guilt. I feel empowered and relieved.”
“The U=U Campaign it has made me believe that maybe I can have a relationship with someone, some day. But I don’t think U=U has made an impact on the heterosexual population yet. How can we reach this population? It needs to be put in the Times or Maclean’s or something that the general population is going to read. It’s not enough if only those living with HIV or working in the HIV sector know about it.”
The current scientific consensus behind U=U is based upon evidence from multiple studies completed over the past several years, which have now come together to make it clear once and for all that a person living with HIV who has an undetectable viral load WILL NOT transmit HIV to their sexual partners – period. However, some would say that this conclusion was clear much earlier than 2017. Do you believe that scientists, healthcare providers, and AIDS Service Organizations were too slow in adopting a hard stance on the impact of an undetectable viral load? If so, why do you think that is and what is its impact?
“I feel that the hardest people to convince about U=U is ourselves – people living with HIV. Some of us have put up barriers in order to protect ourselves and ease the fear of potentially transmitting the virus to someone else. Even with the science changing, those barriers don’t necessarily come down overnight. The science has caught up but first we need the confidence to back it up. Years of being labeled dirty has done a lot of damage.”
“Yes they were slow. However, there is always caution in health care, particularly regarding new treatments. The systems use legal teams and risk mitigation in their decision-making process and at times the science is faster than the policy or systems. That said, some of the reasons for the lag are also likely based in judgement that HIV positive people are irresponsible; that they are sources for new infections; that condom use will decline (although people were already not using effectively or consistently anyway); or STI rates will go up. Also, don’t forget that just a few years ago, doctors who talked about the new science were essentially labeled heretics in their field. These things take time. That said, the science has come around and it is time for the system to catch up.”
Conversely, community – particularly those living with HIV and those who belong to populations most at risk of infection – seemed to see the writing on the wall and began to adopt this position earlier and more forcefully. Why do you think that is?
“There are only so many priorities any one person can juggle in a given day. The truth is, most people – even those who work in the field of HIV – are not living with HIV each day. For them, embracing U=U comes down to a mix of factors that might lead them to be a little more conservative in their messaging. But for people who are living with HIV day-in and day-out, this affects your relationships, your self-confidence, and your safety – your life! So, it’s really no surprise that people living with HIV were early adopters of U=U.”
“We will have to fight to get people to accept this new information just as hard as we did to convince people that you can’t get HIV from a handshake – which, believe it or not, at one point some people did. The science is there but so too is ignorance. We have always had to lead and demand rights, access, and changes to policy as people living with HIV. And we will continue to do so. We are the experts of our own lives.”
Some individuals supporting U=U have begun following the principle of “see something, say something,” meaning that if they see information that is out of date, particularly as it relates to the impact of an undetectable viral load or treatment as prevention, they will call it out. Have you had to do this? And why do you feel it’s important to keep organizations accountable in this way?
“Often. But it’s important to look beyond AIDS Service Organizations and HIV care providers. The messages that are being taught to allied professionals such as social workers need to be updated as well. We also need to ensure that information being taught in high schools is up-to-date as it pertains to U=U. It’s easy to go on the website of an AIDS Service Organization and point out a piece of information that is out-of-date. However, getting the message out to others who need to hear this information if we’re to truly tackle HIV stigma will require a long-term, systemic effort.”
“Yes, I have. Quite often, actually. Those working within the HIV sector have a responsibility to provide up-to-date, scientifically factual information and research. There cannot be any continued denial and control of information. People with HIV need and deserve to know that this is a fact in their lives. And if the HIV sector is ever to do anything meaningful about HIV stigma, it needs to be communicated beyond just people living with HIV and the HIV sector. It needs to be communicated to society as a whole.”
Knowing what we now know, that undetectable equals untransmittable, how do you think that should impact HIV prevention work moving forward?
“It really is amazing in the sense that people living with HIV who are diagnosed and on treatment can no longer be cast as part of the problem. The science confirms that people living with HIV who have an undetectable viral load are actually a safer bet for someone who wishes to remain negative than those who presume they are negative but are unaware of their true status. Therefore, the focus needs to shift to ensuring that more people who are living with HIV are aware of their status and can access treatment and therefore their viral load. That means removing barriers to testing, tackling HIV stigma, and making sure we link people to treatment as early as possible once diagnosed.
“U=U needs to be acknowledged and included in all educational components as a legitimate and valuable prevention tool and activity – just like condoms, testing, PrEP, and PEP! This will help ensure that all people have access to a prevention option that works for them. It will also help reduce fear and ignorance toward people living with HIV who have historically been seen by many as something to fear and a potential source of infection, which we now know (when undetectable) they are not. And with these new developments (in our understanding of U=U and PrEP) we need to start talking about pleasure, sensuality and the right to have and enjoy these as part of our lives. It’s time for sex-positivity instead of fear-based messaging.”
For more information on the U=U campaign and the related science, visit the Prevention Access Campaign