Last week, after I had completed my final task at the 2017 U.S. Conference on AIDS in Washington, D.C., I felt good about the variety of work that had been done at the meeting and the progress that was being made on many fronts. I was particularly struck by the obvious growing consensus about the research showing HIV treatment that leads to viral suppression prevents sexual transmission of the virus. Even though there were few sessions dedicated specifically to treatment as prevention, there were discussions going on everywhere about it, and the U=U (undetectable equals untransmittable) campaign that has continued to gain momentum over the past year.
Advances in antiretroviral treatment (ART) have made it possible for many more people living with HIV to achieve and maintain viral suppression (typically considered to be below 200 copies of HIV/milliliter of blood, or even lower to undetectable) for years and years. We know that viral suppression improves the health of people living with HIV and significantly reduces HIV-related deaths. In recent years, our knowledge about the prevention benefits of treatment has evolved significantly. The scientific evidence is consistent and conclusive. Several large studies have failed to find a single case of sexually transmitted HIV that could be linked to someone with a suppressed viral load. These data have been the subject of many media reports, communications from federal agencies that went out after the data were released, and many discussions in the community. Yet it has taken time for people living with HIV, health care and prevention providers, and federal agencies to translate the science into practical and effective messages and actions that people can use with confidence.
These scientific findings require that we step back and re-assess what we thought we knew for the last 36 years. At USCA and in discussions we’ve been having for about a year with internal and external stakeholders, it is clear that people living with HIV are leading the way, and they are more than ready for others to follow.
These study results are a game changer for HIV prevention, care, and treatment. They are also radically changing how many people living with HIV see themselves, how they are seen by others, and relieving them of the psychological burden of the fear that they might inadvertently infect someone they love. At USCA supporters of the U=U campaign were actively engaged in raising awareness about the science and the need for public health agencies and others to accurately deliver up-to-date messages to all stakeholders.
(Indeed, dozens of people living with HIV and their allies even led an exuberant U=U demonstration during one of the plenary sessions. The excitement and joy of this moment was amplified by the sounds of Cool and the Gang’s disco anthem “Celebrate” that captured the feeling of the advocates who took the stage and many more in the audience who clapped, swayed to the music, and sang along in support of the demonstrators.)
Throughout the conference, I had several opportunities to engage participants on this topic as well as to discuss efforts underway at the U.S. Department of Health and Human Services to bring our messages up to date with the science and to clearly and more consistently communicate about the implications of these findings for HIV prevention.
Personal Impacts of the Information
In an update to a conversation we began at last year’s USCA, I facilitated a Facebook Live session with HIV.gov from the conference on what the data mean to those of us who are living with HIV. We brought back some of the people who participated in this discussion last year, Gina Brown of the Southern AIDS Coalition, Murray Penner, Executive Director of NASTAD, and Bruce Richman, the co-founder of the Prevention Access Campaign that is the driving force behind the U=U campaign, and we added Jesse Milan, the CEO of AIDS United. I spoke with these colleagues and friends about how the scientific findings about treatment as prevention are influencing their work as well as their own lives. I was especially moved by a personal story shared by Gina Brown of the Southern AIDS Coalition. In the Facebook Live from the 2016 USCA, she had shared that she had long held back from dating because of fear of transmitting HIV to a partner. But, over the last year the new data had caused her to re-think that reluctance. So, I was delighted when she shared this year that she is now dating someone. As she gained a better understanding of the risk of HIV transmission with a suppressed viral load, her self-perception began to shift. She re-examined her fears and attitudes in light of the data, and felt that she was ready to date again. Gina’s story is just one example of many that I’ve heard over the past year about how as people living with HIV learn about these findings, they become aware of a burden they have been carrying, and recognize and get rid of some internalized stigma that has been weighing on them and, maybe even preventing themselves from living a rich, full life. The other panelists shared their reflections on the personal and professional impacts of these scientific findings.
Developing Core HHS Messages
During a packed workshop with Bruce, Gina, and Jessica Lacy from CDC, we talked for two hours about how organizations and people around the world have responded to the U=U message as well as the federal response to the scientific data on the prevention benefits of treatment. I had the opportunity to discuss the work of an ad hoc HHS work group that is reviewing the science and developing updated message concepts for use across HHS agencies. The work group includes senior leaders and communicators and subject matter experts from NIH, CDC, HRSA, and SAMHSA who are invested in raising awareness about these data and delivering clear and accurate messages about what the data mean for prevention. Over the past several months, this work group has been taking a deep dive into the scientific findings and considering how best to communicate what we say about the prevention benefits of viral suppression, what we know with confidence, what we do not yet know fully, and what message might work best for various audiences. The science is clear, but it has taken time to come to agreement about the best way to communicate about the science so that people can make informed choices that are guided by accurate information. Along the way, we’ve gotten feedback from many in the HIV community, including during an August webinar.
Our goal is to develop a unified set of message elements so that communication about this important science is clear, concise, consistent, and accurate. These message elements then can be tailored to various audiences and formats as appropriate.
During that workshop, I presented some of the draft message elements that were developed during this process. We received some good feedback at USCA, but we are looking for more input from community members, health departments, and health care and prevention services providers on the language used to communicate key concepts. We are striving to use plain language that is clear, accurate, and gives people information that they can use to make informed decisions that prevent transmission of HIV. You can learn more about the draft messages concepts and share your feedback during two upcoming webinars. One is focused on getting input from people living with HIV or at-risk for infection. The second is for health departments, health care providers, and people conducting prevention programs.
Of course, the most important thing is that the final messages are accurate and understood as intended by the persons they have been designed to reach. CDC will be conducting message testing on our final set of possible alternative wording for these messages to assess how they are understood by the people we are working to reach. Our goal is to have the final core messages completed before the end of this year.
But we aren’t waiting until then to act. As part of this process, CDC recently posted a notice on its HIV website about what the science says and that its messages and content about the prevention effectiveness of HIV treatment and viral suppression for sexual transmission of HIV are being updated. Since HIV.gov’s prevention content features or adapts much of CDC’s content to ensure consistency of messaging, it too has posted a similar message and will be revising its content in the coming weeks and months.
Key Role of Providers
Once we have established the core message elements, each HHS agency will take these elements and work to present them in campaigns, programs, and communications activities in ways that are appropriate and tailored to meet the needs of specific audiences including people living with HIV, healthcare providers, people at-risk for HIV infection, the general public and others. During my several discussions on this topic at USCA, I heard over and over again about the key role that healthcare providers play in fostering an accurate understanding of what the science says. Many healthcare providers are giving accurate and up to date information to their patients about the risk of HIV transmission by a person living with HIV who is on ART and has sustained a suppressed viral load. They have been a great resource to their patients and community. But we have also heard that some providers are lagging behind, not only failing to provide this information about the prevention benefit of treatment to their patients, but also being judgmental and stigmatizing. HHS will be working across its agencies to ensure that these messages get out to providers and to promote accountability for communicating accurate information and providing HIV care consistent with current guidelines.
We are continuing to make progress in our fight against HIV. These new data about the prevention effectiveness of viral suppression as the result of ART on the risk for sexual transmission of HIV represent a giant leap forward in the effort. Responding to them requires that we rethink what was once true for the less effective medications we had early in the epidemic, but that’s part of the history of the epidemic. What matters now is that we are open to the accumulation of evidence that paints a clear picture.
What we see in this picture is that getting and staying virally suppressed is not only the best thing people living with HIV can do to maintain their health, but it is also one of the best ways to prevent new infections through sex.
It is imperative that we continue to follow science as it leads to a future where new HIV infections are extremely rare and we no longer have the divisions that currently exist because of HIV status.