U=U in the National HIV/AIDS Strategy

There is much to be thankful for as we head into the new year!

For the first time ever, Undetectable = Untransmittable (U=U) has made it into the National HIV/AIDS Strategy![1] Released on World AIDS Day by the White House Office of National AIDS Policy (ONAP), the newly updated plan focuses on priorities for 2022-2025. ONAP highlights U=U as the commonly understood way to describe treatment as prevention and is featured in the first goal of the strategy: prevent new HIV infections.

This is an exciting milestone! As we celebrate this inclusion, we also acknowledge that it isn’t enough. We need our U.S. stakeholders to continue to push the U=U message as a top priority. As Dr. Anthony Fauci, Director of National Institute of Allergy and Infectious Diseases (NIAID) for National Institute of Health, has said, “The concept of U=U is the foundation of ending the epidemic."[2]

More Than a Mention

As such, it is imperative that U=U bears more than a mention in any plan that aims to end HIV.

U=U is larger than prevention; it can also reduce stigma and improve the quality of life for people living with HIV. U=U is a clear call to action to increase access and remove barriers to treatment and care. A growing body of peer-reviewed scientific evidence demonstrates how U=U positively influences health outcomes across the continuum of care.

Research shows that U=U education can significantly increase testing uptake,[3] and being informed about U=U from a healthcare provider is associated with significantly more favorable health outcomes for people living with HIV compared to those who are not informed about U=U.[4] These include improved viral suppression, greater adherence, optimal health (including mental health and sexual health), and greater willingness to share HIV status with others.

Some states are already seeing benefits by featuring U=U in their Ending the HIV Epidemic (EHE) plan and activities. For example, after research demonstrated a U=U education and outreach project dramatically increased the awareness, believability, and acceptance of U=U,[5] the Mississippi Department of Health invested in a state-wide rollout of U=U with Prevention Access Campaign as an EHE partner.

In order to fully harness the individual and public health benefits of U=U, our field must invest in it! You can do so by integrating  U=U across activities and goal areas, and incorporating it into materials, education, programming, and interventions. For example, Washington D.C. requires grantees to integrate U=U into their clinical and non-clinical services and communication with individuals.

Meaningful Inclusion

Such meaningful inclusion of U=U in the National HIV/AIDS Strategy, the national Ending the HIV Epidemic Initiative (EHE), and every state, county, and city/territorial, and jurisdictional plan is on our wish list. So please, keep that in mind if you’re holiday shopping for the Prevention Access Campaign. Of course, our wish list does not stop there!

We frequently call on our public health partners, in particular our federal partners, to do more, say more, and be more flexible in their U=U messaging. As stakeholders and members of the communities they serve, it is our role to hold these public entities accountable. We can and do ask them to use their authority and resources to clearly and unambiguously endorse and promote U=U.

It is equally important to acknowledge and be thankful for what has already been accomplished. There is much to celebrate as we reflect on how federal leaders and agencies have worked closely with the community and endorsed U=U so far. Shifting paradigms within large bureaucracies is no easy feat!

Red Tape and Politics

The essay What governments can do to end HIV stigma[6] gives a behind the scenes look into one state health department’s journey to endorsing U=U. The science was never in question, yet it still took nearly a year of conversations and negotiations. This state was an early adopter; many other states took years to secure the necessary approvals to sign on to the U=U campaign, and others are still considering whether and how to embrace U=U.

Now imagine that complexity multiplied to a federal magnitude. Rigid hierarchies and stringent approval processes mean that it could be that a single decision-maker is the sole outlier preventing official endorsement of U=U, or more flexible messaging in official materials within these agencies. It’s possible that decisions around U=U are being made by an agency’s legal department, by individuals who might not be scientifically trained HIV experts.

So, when we are frustrated by the limited messaging used by our federal and other partners, or the fact that they haven’t rolled out a national U=U campaign like other governments, including country-wide programs in  England, Kenya, Monaco, Vietnam, and Zambia, it’s helpful to remember that their seemingly slow pace isn’t about the science.

Federal Endorsements of U=U Science

In fact, our federal partners and leaders have repeatedly affirmed the science.

The Centers for Disease Control and Prevention (CDC) states that the data proving U=U “provide conclusive evidence of the power of viral suppression in preventing HIV transmission,[7]”and that the evidence to date suggests sexual transmission as “not realistically possible[8]” when someone is undetectable. Their official estimate is that U=U is 100% effective[9] at preventing sexual transmission of HIV.

Federal leaders have endorsed the science since the U=U campaign launched in 2016. That year, Dr. Carl D. Dieffenbach, Director of NIAID’s Division of AIDS in the National Institutes of Health (NIH), stated: "For somebody who is in a discordant couple, if the person [with HIV] is virologically suppressed, ’durably’ --means there is no virus in your system, hasn’t been for several months -- your chance of acquiring HIV from that person is ZERO; let’s be clear about that: ZERO.[10]

Dr. Fauci also uses “zero risk” language and urges confidence in U=U, stating that “from a practical standpoint, the risk is zero, so don’t worry about it.[11]

Language Matters

The NIH U=U webpage[12] is similarly clear, stating that “an overwhelming body of clinical evidence has firmly established the HIV U=U concept as scientifically sound”. They continue by explaining that people who are undetectable “cannot sexually transmit the virus to others”. The use of such plain and confident language in all official federal messaging is high on our wish list.

The CDC regularly describes U=U as “preventing transmission.[13][14]” The Health Resources and Services Administration (HRSA) states that “people living with HIV who have consistent viral suppression do not sexually transmit HIV[15]” in a 2018 letter encouraging Ryan White HIV/AIDS Program colleagues to educate people living with HIV about U=U.[16] 

In official materials, CDC, HRSA, ONAP, and other federal partners often use “effectively no risk” (ENR) when describing U=U. Advocates have raised concerns that “effectively no risk” presents significant barriers to education, as it may not be understood or translated with confidence.  At the same time, we acknowledge the advocacy it took for the CDC to approve any messaging on the science of U=U and celebrate that historic first step.

Federal Support for Flexible U=U Messaging

The CDC clearly understands that the phrase “effectively no risk” (ENR) is not sufficient to ensure that all people living with HIV are aware of and fully understand this life-changing science. That’s why they make it explicit in a 2019 letter encouraging health departments and community-based organizations to share the science of U=U that there is no expectation or mandate to use ENR.[17]

The CDC letter states, “research shows that no single message is acceptable or understandable to all audiences, so it is important to have flexibility and options when communicating about this life-saving science.” They then grant explicit approval to use “materials developed by community groups such as Prevention Action Campaign.”

True to their word, public servants working within CDC and other federal agencies overseeing HIV prevention, Ryan White, and EHE grant monies and programming regularly approve the use of federal funding for U=U education, campaigns, programs, and materials that use clear, confident, and locally-informed messaging.[18][19]

The national Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents with HIV[20] also include U=U and recommend that healthcare providers inform all patients living with HIV about how viral suppression prevents sexual HIV transmission. The CDC also urges healthcare providers to discuss U=U with all of their patients living with HIV and has created a guide on how to start those conversations as a resource[21].

To Our Federal Public Health Partners

Thank you for everything you have done for U=U! You have not let your endorsement of U=U become stifled by bureaucracy. Instead, you have consistently supported U=U from within the confines of the red tape and regulations you face. The coming year represents a critical opportunity to take your support of U=U to the next level.

Structural forms of discriminations, racism, and stigma in government decision-making, policies, and practice are disproportionately experienced by and magnified in Black and Brown communities, immigrant communities, and among gender and sexual minorities, sex workers, and people who use drugs. We urge you to challenge and change harmful policies and practices in your institutions that limit access to U=U information and the treatment and care for people living with HIV to benefit from it.

We are here to support you! We are available for consultation on messaging and material development, U=U training, and technical assistance. We also have many exciting ideas on our wish list to improve the health and well-being of people living with HIV and bring us closer to ending the epidemic.

Our Wish List

The CDC’s Division of Global HIV & TB has taken the lead in developing brilliant country-wide U=U programs. We hope our U.S. federal partners will meaningfully involve people living with HIV, and the community-led U=U movement, and do the same. We propose collaborating with you on the following projects:

  • Implement a national U=U and viral suppression strategy to fight stigma, prevent transmissions, improve HIV-related health outcomes, and reduce disparities
  • Create national U=U and viral suppression campaigns
  • Host a national U=U and viral suppression conference
  • Develop U=U training and resources for healthcare providers in collaboration with the AIDS Education and Training Center Program and other national provider, training, and capacity building organizations
  • Include U=U requirements in prevention, Ryan White, and EHE grantee work plans and activities
  • Integrate U=U into Ryan White funded core medical and support services to improve health outcomes

Many of our ideas are based on what we’ve learned from the best-practices of U=U partners in other parts of the world, and several of these suggestions are reflected in Call to action: How can the US Ending the HIV Epidemic Initiative Succeed.[22] This Lancet article was co-authored by CDC Director Dr. Rochelle Walensky,  Prevention Access Campaign’s Founding  Executive Director Bruce Richman, and other U.S. leaders.

To State and Local Public Health Partners

While the support and endorsement of federal partners is important, we also recognize that U=U is largely being disseminated through our partners in state, county, and city health departments, membership associations, capacity building and technical assistance organizations, community-based organizations, healthcare organizations, and by individual U=U champions.

Thank you for your outstanding efforts and advocacy.  We are also here to support and collaborate with you! We also offer consultation and personalized feedback on U=U communication, implementation, how to integrate U=U into your ending the HIV epidemic plan, and more.

To All

As we head into a new year, we hope that you will commit in your New Year’s resolutions to being a U=U champion in and beyond your organization. We appreciate everyone’s support in 2021 and look forward to even greater collaboration in 2022.

Please continue to share U=U on social media using #UequalsU, become a U=U community partner if you haven’t already, and join us on the Journey to 400,000.  #JT400K is our new U.S. initiative that focuses on more fully supporting and advocating for the estimated 400,000 people living with HIV in the United States who are not yet virally suppressed.

To learn more about how influential public health and governmental organizations around the world - such as the WHO, PEPFAR, and UNAIDS - endorse U=U, check out our new reference document, U=U Flagship Endorsements.

Please contact us at EHE@preventionaccess.org  to learn more, schedule a meeting, or explore partnerships!

Have a wonderful holiday season and best wishes in the new year!

- The U.S. Team at Prevention Access Campaign

[1] https://hivgov-prod-v3.s3.amazonaws.com/s3fs-public/NHAS-2022-2025.pdf

[2] https://youtu.be/kCM-6dyDE-Q

[3] https://preventionaccess.org/wp-content/uploads/2021/04/Smith2021_Article_UndetectableUntransmittableUUM.pdf

[4] https://viivhealthcare.com/content/dam/cf-viiv/viiv-healthcare/en_GB/files/29-06-30_PP2_global_results_report.pdf

[5] Oral abstract, 16th International Conference on HIV Treatment and Prevention, Orlando, November 2021

[6] https://apolitical.co/solution-articles/en/what-governments-can-do-to-end-hiv-stigma

[7] https://www.cdc.gov/hiv/pdf/risk/art/cdc-hiv-art-viral-suppression.pdf

[8]  https://www.cdc.gov/hiv/pdf/risk/art/cdc-hiv-art-viral-suppression.pdf

[9] https://www.cdc.gov/hiv/risk/estimates/preventionstrategies.html

[10] https://www.youtube.com/watch?v=MGSTO2CSFrU&feature=youtu.be

[11] https://imstilljosh.com/fauci-the-risk-is-zero/

[12] https://www.niaid.nih.gov/diseases-conditions/treatment-prevention

[13] https://www.cdc.gov/stophivtogether/library/hiv-treatment-works/palm-cards/cdc-hiv-together-treatment-palmcard-undetectable.pdf

[14] https://www.cdc.gov/hiv/pdf/risk/art/cdc-hiv-tasp-101.pdf

[15] https://preventionaccess.org/wp-content/uploads/2021/04/Ryan-White-Dear-Colleague-Oct-19-2018.pdf

[16]  https://preventionaccess.org/wp-content/uploads/2021/04/Ryan-White-Dear-Colleague-Oct-19-2018.pdf

[17]https://preventionaccess.org/wp-content/uploads/2021/04/CDC-Letter-Approving-Usage-of-UU-Communications.pdf 

[18] https://golowsa.org/

[19] https://www.liveuequalsu.com/

[20] https://clinicalinfo.hiv.gov/en/guidelines/adult-and-adolescent-arv/whats-new-guidelines

[21]https://www.cdc.gov/stophivtogether/library/topics/treatment/brochures/cdc-hiv-lsht-treatment-brochure-transmission-prevention-provider.pdf

[22] https://preventionaccess.org/wp-content/uploads/2021/04/The-Lancet-Call-To-Action-UU.pdf