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The liberating message of ‘Undetectable = Untransmittable’
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As ID professionals, we all are familiar with the concept of HIV treatment as prevention, or TasP. The science establishing TasP as an effective medical and public health strategy was established by HPTN 052, a randomized clinical trial involving 1,763 serodiscordant couples from nine different countries, which showed a 93% reduction in transmission risk in couples in which the infected partner was assigned to early ART. The implications of this finding were so significant that in 2011, Science highlighted the study as its “Breakthrough of the Year.” Collectively, results from HPTN 052 and several other landmark studies have validated that people living with HIV who have maximally suppressed virus on ART do not sexually transmit HIV to their partners. But surprisingly, this information has not been conveyed to the affected community in a meaningful way that would allow them to share its benefits.
To address the disconnect between established science and community awareness and action, and in collaboration with people living with HIV, in 2016 the Prevention Access Campaign began a campaign called “Undetectable = Untransmittable” (U = U). Together with global experts, the initiative issued a consensus statement on the science of TasP, with the goal of broadening awareness of this historic development. That consensus statement has been signed and endorsed by numerous leading HIV physicians and researchers, as well as hundreds of HIV/AIDS organizations in countries around the world. It is supported by quotes from leaders, including Anthony S. Fauci. MD, director of the NIH’s National Institute of Allergy and Infectious Diseases, who said in September 2017, “The science really does verify and validate U = U.”
The power of U = U is that it is a simple, clear statement free of nuance or caveats, specific to prevention of sexual transmission: When a patient’s plasma viral load is durably suppressed, they will not sexually transmit HIV to their partners. But that simplicity may be one of the factors that prevents medical professionals from being able to embrace it. For all the right reasons, we want as high a degree of certainty as possible before we present information to our patients. We want to be able to be absolute. And yet this goes against what we know as scientists — that there is no such thing as 100% in science. Because this is impossible, and to manage the unknown, we tend to couch our guidance, using big words and long sentences to ensure that our patients know that, while the risk may be infinitesimal, it still exists. And who does that benefit? It may make us feel better, but does it help our patients? Our job is to provide them with meaningful information to guide their lives, and if we provide caveats to the point that our patients miss the overwhelmingly positive outcomes and impact of TasP and U = U, then we are in fact doing them harm. This becomes particularly clear when we consider the broader implications of TasP and U = U on factors that profoundly influence our patients’ lives, particularly their experiences of stigma.
We recently participated in a meeting with other researchers, clinicians, policymakers and advocates who examined exactly this issue in the lives of women living with HIV. During the discussion, it became clear that TasP can shift the narrative around women (and all people) living with HIV and their bodies from one of “risk and stigma” to one of “safe and normal,” thereby reducing HIV-related stigma and all its harmful consequences. Several women at the meeting who are living with HIV reported that TasP and the U = U campaign have dramatically increased their sense of hope and improved their quality of life. Here are just a few of the things they said:
“U = U gave me a sense of hope. I’ve been living with HIV for 20 years, and I haven’t been in a real relationship with anyone in a long time. But when I learned about U = U, it made me feel normal, it changed my life. And it’s changing other lives, too. My community has a high prevalence of undiagnosed HIV. This is the thing that’s going to give women who look like me the empowerment they deserve.”
“It’s really important to advocate U = U. People’s lives are on the line. U = U impacts criminalization and violence in relationships. People die because of fear of HIV. Women have been murdered after having their status found out.”
“For me, this is about will. For the last several years, our scientific leaders have been saying that we now have the tools to end the epidemic, but do we have the will? U = U is a way to generate the will and inspire action.”
This meeting also highlighted the potential role that TasP and U = U have in reducing one of the most extreme forms of structural stigma: HIV criminalization, which refers to the use of criminal law to penalize alleged, perceived or potential HIV exposure. As of August 2017, 34 states, two territories and the United States federal government had HIV-specific criminal laws that can be used to prosecute alleged nondisclosure of HIV-positive status before sexual contact and unintentional HIV transmission. These laws are known to be used disproportionately to prosecute women and people of color. Think of how liberating it would be to our society to be free of such an injustice whose basis is completely undermined by the evidence.
Of course, there remain unknowns. Sexual transmission is not the only mode of HIV transmission. The TasP-related science on HIV transmission through injection drug use and breastfeeding routes is not conclusive. But the science of TasP in sexual transmission is compelling and clear. And it is our responsibility as medical professionals to communicate that to our patients.
There is no question that the way we present information to our patients plays a role in how they interpret it. The manner in which we explain TasP and U = U can have a profound effect on how our patients feel about themselves and what actions they choose to take in relation to their own health, as well as that of others. Although couching that information may make us feel better or more secure, it does not help them. TasP and U = U have the potential to be liberating, motivational messages for people living with HIV. It is our job to communicate those messages in a way that our patients can hear them. By doing so, we have a unique opportunity to improve the total well-being of people living with HIV.
- References:
- Vernazza P, et al. Presentation in HIV Transmission under ART. Symposium session SuSat41. Presented at: International AIDS Conference; August 3-8, 2008; Mexico City.
- Cohen MS, et al. N Engl J Med. 2016;doi:10.1056/NEJMoa1600693.
- Rodger AJ, et al. JAMA. 2016;doi:10.1001/jama.2016.5148.
- The Center for HIV Law & Policy. Chart: State-by-state criminal laws used to prosecute people with HIV. 2017. https://www.hivlawandpolicy.org/resources/chart-state-state-criminal-laws-used-prosecute-people-hiv-center-hiv-law-and-policy-2012. Accessed June 22, 2018.
- For more information:
- Elizabeth Connick, MD, is a professor of medicine and chief of the infectious diseases division in the University of Arizona College of Medicine – Tucson and a member of the Women’s Research Initiative on HIV/AIDS. She is also a member of the Infectious Disease News Editorial Board. Connick can be reached at connicke@deptofmed.arizona.edu.
- Judith D. Auerbach, PhD, is a professor of medicine at the University of California, San Francisco and a member of the Women’s Research Initiative on HIV/AIDS. Auerbach can be reached at Judith.Auerbach@ucsf.edu.
- Dawn Averitt is the founding director of the Women’s Research Initiative on HIV/AIDS. Averitt can be reached at daveritt@thewellproject.org.
- Jenna Conley is the program director for the Women’s Research Initiative on HIV/AIDS. Conley can be reached at jenna@conleycommunications.net.
Disclosures: Auerbach, Conley and Connick report no relevant financial disclosures. Averitt reports receiving honoraria for serving on the community advisory board at Merck.