Thanks to advances in HIV science over the last four decades, people living with HIV who are on medication and maintain an undetectable amount of virus in their blood can lead long, healthy lives without the fear of passing HIV to their sexual partners. This is the powerful message behind “Undetectable = Untransmittable (U=U).” People living with HIV, alongside leaders in the community, have worked tirelessly to share the U=U message and have made significant progress since 2016. This life-changing science has transformed what it means to live and love with HIV globally.
Dr. Theresa Tam, Canada’s Chief Public Health Officer (CPHO), and Bruce Richman, founding executive director of the Prevention Access Campaign (PAC), spoke in conversation about moving the U=U message into action, tackling stigma and inequities, and achieving our global goal of reaching zero new HIV infections, zero AIDS deaths, and zero discrimination by 2030.
Dr. Tam: Hi Bruce, it was nice connecting with you in Montreal at the 24th International AIDS Conference and hearing more about the incredible work PAC has been championing to spread the word about U=U.
Bruce Richman: Thank you, Dr. Tam! It was a great honour to have you provide the welcoming remarks at the U=U Global Summit, and co-lead the global U=U call to action, on behalf of the Public Health Agency of Canada at AIDS 2022 this summer!
Dr. Tam: It’s an important cause: U=U can transform lives. It can reduce stigma and discrimination, and support uptake of HIV testing and treatment which results in more people achieving viral suppression. You have played an instrumental role in the movement to raise awareness of U=U. I’d love to hear more about where your journey with U=U started and what motivates you to continue your advocacy work.
Bruce Richman: I’ll never forget it. It was over 10 years ago, in January of 2012. I’d been diagnosed with HIV in 2003 and was terrified of passing it on. So, I didn’t allow myself to love. I closed up my heart. I felt like I was dangerous. When my extraordinary HIV doctor, Michael Wohlfeiler, told me about the science of U=U, it was like a curtain had been pulled open. I started to see the possibility of love, sex and intimacy in my life without fear. It was like a new world.
But then, of course, I became upset. I was outraged that the science wasn’t getting out to the public. I couldn’t keep that life-changing information to myself. The science behind U=U had been accumulating since shortly after the advent of antiretroviral therapy, and it was an injustice that only folks like me, who were well connected to the medical establishment, knew about it and could make informed decisions about our bodies. We launched the U=U campaign based on the conviction that all people living with HIV have a right to accurate and meaningful information about our social, sexual and reproductive health. I was fortunate to find other people, including activists, researchers and public health officials, who agreed!
Dr. Tam: I admire your courage and drive. In Canada, we estimate that there are nearly 63,000 people living with HIV and more who are undiagnosed. I imagine many have experienced similar feelings on their journey living with HIV. I worry that some people are not being tested and are not able to access life-saving HIV treatments because they don’t know about U=U.
Everyone should have access to accurate information about their sexual and reproductive health, and those of us working within the public health and clinical health systems play an important role in sharing that information. Given your experience as both a person living with HIV and an activist, what do you want healthcare providers to know about U=U?
Bruce Richman: It is every healthcare provider’s ethical duty to tell their patients living with HIV about U=U. As my friend, hero and preeminent scientist on HIV transmission, Dr. Alison Rodger, said at the 2018 International AIDS Conference, “The time for excuses is over. It’s very clear the risk is zero.” And as you know, when healthcare professionals tell their patients about U=U, data show it significantly improves health outcomes. People are starting treatment early so they don’t need to worry about passing on HIV. U=U has been a life-changer for people living with HIV and our partners. It’s so inspiring and hopeful to meet people who share that they’re finally being intimate with their sexual partners without fear and feeling new freedom from the burdens of HIV stigma. And people are conceiving children they never thought possible. Many healthcare professionals have told us that telling their patients about U=U is the most meaningful part of their work.
Given that healthcare providers are required to maintain current medical knowledge, we should not be subjected to situations where they do not know about U=U, or worse yet, they are aware of it but choose not to share the information with their patients. It is an absolute injustice and a disservice that people living with HIV must become educators for healthcare providers to teach them about U=U.
We know that the U=U message is powerful in addressing stigma in the community and beyond. If we think even broader than that, what role do you think the U=U message plays in addressing inequities?
Dr. Tam: HIV disproportionately affects certain populations experiencing social and economic inequities, including the impact of colonization for First Nations, Inuit and Métis peoples, which create barriers to effective care and services. Stigma against HIV, and other health conditions such as mental illness and substance use disorders, can further perpetuate these inequities.
The U=U message is one of hope and goes a long way to address inequities. As you mention, U=U provides reassurance, reduces stigma and encourages people to get tested and treated for the virus.
There are many different places where you can get a free HIV test, including health clinics, doctor’s offices, or at testing events. Some community organizations provide on-site testing and offer HIV self-test kits. Local health departments or whereto.catie.ca are also great resources.
While everyone has their own reasons for learning about U=U, health care professionals are critical in conveying the message of hope behind U=U. When health care professionals learn more about U=U, they can help create healthcare spaces that are more inclusive, safe and stigma-free, where people can comfortably talk about their HIV status and learn about and receive the care they need.
We are reminded of the need to address the inequities and barriers related to HIV prevention, testing, and treatment through the recent 2022 World AIDS Day slogan: Equalize.
As a community leader and advocate, how do you think we can support and work with communities who are at varying levels of readiness to implement U=U?
Bruce Richman: Given U=U is truly a community-led movement, it’s essential to provide support to communities as experts to co-create and lead U=U initiatives, including tailoring the message, for the people they are best situated to understand and engage.
I am aware that the U=U message has not translated well within Indigenous communities, given the original messaging focuses heavily on the biomedical benchmarks that are not central to Indigenous wellness, healing and medicine. Films such as the CAAN/CATIE co-produced Strong Medicine have supported members of Indigenous communities to share and understand how testing, treatment, continuity of care and U=U fit within Indigenous worldviews. If public health bodies from all levels of jurisdiction supported and engaged in community-centred consultations to co-create strategies and programming that worked for specific communities, it would be a huge step forward. It is critically important to co-create strategies and programming with communities most impacted by HIV so no one is left behind.
I’d also like to highlight that the UNAIDS Programme Coordinating Board has released a groundbreaking report Undetectable = Untransmittable = Universal Access (U=U=U): A Foundational, Community-led Global HIV Health Equity Strategy, which underscores U=U as a health-equity strategy beyond a biomedical benchmark or anti-HIV stigma intervention. This report forms a convincing argument for why utilizing U=U in advocacy for health equity can dismantle some of the persistent systemic and structural challenges that are hindering the current global HIV/AIDS response, especially for members of historically oppressed and marginalized groups and disproportionately impacted populations. It illustrates that investing in the health and well-being of all people has widespread societal, economic and public health benefits. Everyone wins with U=U! From your perspective, what are some ways the U=U message can be better integrated into public health systems?
Dr. Tam: Public health takes an equity approach, recognizing that each person faces different circumstances that lead to the health outcomes they experience. Investments in programs and policies that focus on addressing health inequities, stigma and discrimination, and supporting people so that they can access the care they need, all go a long way in integrating U=U into the public health system.
Public health has a role to play by amplifying and empowering the voices of community leaders and people living with HIV, such as yourself. When we give community leaders and people with lived experience the space and opportunity to carve out paths for the future, we see incredible progress being made to provide for the social and health needs of the community.
Recent examples include CATIE’s “Can’t Pass it On” campaign, which was spearheaded by people living with HIV in the community. Similarly, the Government of Canada worked with people living with HIV to produce video testimonials that talk about the impact that the U=U message had on their lives.
It was a pleasure to speak with you Bruce, and to learn from your rich experience and community leadership. Thanks so much for taking time to chat with me.