U=U Principles Now Includes Breast Feeding

By: Ranier Simons, ADAP Blog Guest Contributor

The phrase ‘undetectable equals untransmittable’, commonly referred to as U=U, originated from the efforts of the Prevention Access Campaign in 2016.[1] This phrase explains the current scientific consensus that a person living with HIV (PLWHA) who has undetectable levels of the virus in their blood does not pose an infection risk and will not sexually pass the virus on to their partners.[2] Medical research is proving that U=U extends past sexual activities. A recent May 2024 clinical report released by the American Academy of Pediatrics (AAP) indicates evidence shows it is acceptable for HIV-positive mothers to breastfeed.[3] This is a reversal of previous guidance banning the activity.

Photo Source: CNN.com

Recommendations against breastfeeding by PLWHA date as far back as 1985, following the start of the HIV pandemic. This was well before the advent of modern antiretrovirals (ART). Before ART, about 30 percent of maternal-to-infant HIV transmission occurred during breastfeeding. In the early 1990s, there were about 2000 breastmilk-related transmissions annually in the US. Presently, the risk of maternal-to-infant HIV transmission from a parent who is on ART and is virally suppressed is less than one percent.[3]

The recently updated guidelines from the AAP follow 2023 updated recommendations by an advisory panel to the U.S. Department of Health and Human Services (HHS). That panel recommendation stated, “People with HIV should receive evidence-based, patient-centered counseling to support shared decision-making about infant feeding…individuals with HIV who are on ART with a sustained undetectable viral load and who choose to breastfeed should be supported in this decision”.[4] In order to allow PLWHA to breastfeed safely, the AAP updated guidance lists specific requirements. ART must be initiated early in or before the pregnancy, sustained viral suppression must be maintained along with consistent access to ART, and infant prophylactic medication must be administered.[3] The guidelines also recommend regular monitoring of the parent’s viral load. Additionally, research indicates that if PLWHA are going to breastfeed, they must exclusively breastfeed for the first six months of the infant’s life without switching back and forth to formula.[3] Switching could increase transmission risk due to interruptions in the infants’ gut environment.

About 5,000 PLWHA give birth annually.[5] The new guidelines end the history of denying PLWHA the bond created between parent and child with breastfeeding. 

Photo Source: The Well Project

Bruce Richman, the Executive Director of the Prevention Access Campaign, explains, “This is incredible news for the rights, choice, and autonomy of people living with HIV and the joy and intimacy of parenthood! Too many people living with HIV faced criminalization and having their infants removed by child protective services if they chose to breastfeed or chestfeed despite this being a safe method when undetectable." 

Richman further stated the updates to guidance for pediatricians complement the recent HHS and Centers for Disease Control & Prevention [CDC] guidelines updates and further support people living with HIV in making healthy reproductive choices for themselves and their infants.” 

Breastfeeding has health-related benefits for both parent and infant in addition to the familial bond. Breastmilk provides optimal infant nutrition and protection from morbidity and mortality from infectious diseases, allergic conditions, obesity, diabetes, autoimmunity, and sudden infant death syndrome.[3] Breastfeeding protects the parent from breast and ovarian cancer, hypertension, and type 2 diabetes.[3]

Pediatricians and physicians receive their clinical guidance from groups such as the CDC, HHS, and AAP. It is crucial that these new guidelines be widespread and utilized to change the current paradigm of many medical professionals. Unfortunately, many clinicians still hold outdated attitudes regarding HIV as well as they are not up to date on evidence-based science. The new AAP guidelines will enable clinicians to support PLWHA in their decision to breastfeed and empower them to be partners in their care instead of just being told what they can and cannot do with their bodies and infants. The AAP plans to have webinars for clinicians concerning the new guidelines in hopes of effecting widespread adoption of the latest evidence-based recommendations.

Photo Source: American Academy of Pediatrics

Not only is U=U positively affecting breastfeeding, but it is enabling freedoms for PLWHA concerning conception. In the United Kingdom, laws are changing that will now allow heterosexual and same-sex couples with non-transmissible HIV to become parents.[6,7] Amendments to the Human Fertilization and Embryology Act will allow PLWHA with undetectable viral status to donate eggs or sperm to their partners. 

Current IVF law only allows male PLWHA to donate sperm to their female partners exclusively. This means that before the law changed, they could not donate to family or friends. Additionally, the law amendment will allow female same-sex couples undergoing shared motherhood IVF treatment to conceive. In the shared IVF treatment, one partner of the sero-discordant couple provides the egg, and the other carries the embryo.[6] The stipulations for PLWHA wishing to donate under the new law are: they have to have a sustained undetectable viral load, have to prove they have been on ART for at least six months prior to donation, and the person receiving the gamete consents and is aware of the donor’s HIV status.[6]

Not only have medical advancements changed an HIV diagnosis from a death sentence to a matter of chronic disease management, but they are continually taking the shackles off PLWHA's ability to live their lives. HIV stigma still exists. However, the more the understanding of U=U spreads, the easier the lives of PLWHA will become. Moreover, as medical advancements continue, U=U and future achievements will allow PLWHA to live as wholly integrated members of society defined by their humanity and not their disease.

[1] Third Amended Class Action Complaint. (2023, October 24) ). Retrieved from https://consumerwatchdog.org/wp-content/uploads/2023/11/2023-10-24-241_Third-Amended-Complaint.pdf

[2] John Doe One et al. v. CVS Pharmacy Ruling. (2024, April 18). Retrieved from https://www.courthousenews.com/cvs-medication-program-discriminates-against-hiv-aids-patients-judge-says/john-doe-one-et-al-v-cvs-pharmacy-et-al-mtd-ruling/

[3] Doe One et al. v. CVS Health Corporation et al. (2018, March 21). Retrieved from https://dockets.justia.com/docket/ohio/ohsdce/2:2018cv00238/211764

[4] Faul, A. (2018, March 29). CVS Health unintentionally revealed HIV status of 6,000 customers: Lawsuit. Retrieved fromhttps://abcnews.go.com/Health/cvs-health-unintentionally-revealed-hiv-status-6000-customers/story?id=54095674

[5] Schladen, M. (2018, June 29). State, CVS sued over HIV mailing. Retrieved from https://www.dispatch.com/story/news/politics/elections/2018/06/29/state-cvs-sued-over-hiv/11624806007/

[6] AIMED Alliance. (2020, May 15). CVS Health to Settle Lawsuit for Revealing HIV Status of Over 4,500 Patients. Retrieved fromhttps://aimedalliance.org/cvs-health-to-settle-lawsuit-for-revealing-hiv-status-of-over-4500-patients/

[7] Accetta, L. (2021). Expanding therapies, indications and implications for payors: Pipeline trends that will drive change in 2022. Retrieved from https://business.caremark.com/insights/2021/expanding-therapies-indications-and-implications-payors.html   

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.  

Reflections from an HIV Advocate's Journey: Brady Etzkorn-Morris

By: Brady Etzkorn-Morris, Executive Assistant of Global Operations, Prevention Access Campaign

I couldn’t have been more excited when I moved to Nashville in the early spring of 2008. I had just turned 32 and had taken a corporate office job. My career path was falling into place and I felt as if I was finally getting a grasp on “adulting”. However, in July of that same year, my new primary care doctor walked into the room and informed me I had AIDS. Everything around me began to crumble and finding my footing seemed impossible. To help numb the shame and internal pain that came with my diagnosis, I turned to alcohol and methamphetamine which also led to numerous suicide attempts. Thankfully, I had family and friends that came to my rescue and they helped pull me from that dark place.

Having existed in that dark place for so long was one of the biggest reasons I decided to become public about my diagnosis. I realized that while that part of my own story had been written, I could help others to not let their stories sound similar to mine. I became a member of the Nashville Regional HIV Planning Council, Mr. Friendly Tennessee, and various other organizations where I could use my own life experience to create change and to help influence HIV policy on a local level.

Then in 2016, I learned about U=U (Undetectable = Untransmittable), which was the last tool I needed to shed the internalized HIV stigma I had carried since the day of my diagnosis. I was able to use my experiences to influence the Nashville Metro Public Health Department to adopt a resolution supporting the science behind U=U. A U=U Task Force was also formed under the umbrella of our EHE efforts and we became one of the few cities across the country with a local U=U Ambassador program.

When I reflect back on my past 15 years of living with HIV, I now see that so many of the things that I was afraid of happening, never materialized, and HIV gave me so much more than it ever took away from my life; the people I have met along my journey, the love I have received from the HIV community, and my current position working for Prevention Access Campaign has shaped who I am today; and I’m happy to say I truly love this version of myself.

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Could the Tide be Turning on HIV Criminalization Laws in the United States?

By: Brandon M. Macsata, CEO, ADAP Advocacy Association

The ongoing Covid-19 pandemic has revealed a longstanding truth well-known to the public health community, but often ignored by elected so-called 'leaders' and the general public. That is, public health is grossly underfunded in the United States. The federal share of public health expenditures dropped from 45% to 15% over 50 years.[1] Yet, rather than making the needed investments to address societal problems, or untreated cognitive and mental disabilities, or unfavorable social determinants of health, we leverage the vast criminal justice system to 'fix' them. There is probably no better example than the criminalization of HIV/AIDS in this country, dating back to the AIDS hysteria perpetrated by the late, bigoted Senator Jesse Helms. But evidence suggests that the tide is turning on these criminalization laws.

According to the Centers for Disease Control & Prevention (CDC), 37 states have HIV criminalization laws, including HIV-specific exposure laws, general communicable disease exposure laws (which could include HIV), and/or sentence enhancement laws specific to HIV. As of 2020, there were only 11 states with no specific criminalization laws.[2]

Starting in the 1990s, advances in medicine and the advent of the antiretroviral (ARV) therapies revolutionized the fight against HIV/AIDS; now, they are having a positive impact (pun intended) in the fight against HIV criminalization laws. The driving force behind it is Undetectable = Untransmittable, or U=U. In other words, a person living with HIV who is on treatment and has an undetectable viral load cannot transmit HIV through sex. According to the Prevention Access Campaign, "The science is clear. People living with HIV can feel confident that if they have an undetectable viral load and take their medications as prescribed, they cannot pass on HIV to sexual partners."[3]

Since 2014, several states have modernized their HIV criminalization laws - including California, Colorado, Iowa, Michigan, and North Carolina. With respect to these five states, CDC states: "Changes include removing HIV prevention issues from the criminal code and including them under disease control regulations, requiring intent to transmit, actual HIV transmission, or providing defenses for taking measures to prevent transmission such as viral suppression or being noninfectious, condom use, and partner PrEP use."[4]

Photo Source: Prevention Access Campaign

U=U has changed the HIV criminalization paradigm, evidenced by three more states turning the tide on these outdated laws. Joining the chorus for change are Illinois, Missouri, and Nevada. The following news reports provide an excellent analysis on the driving force behind the changes in each state:

• Pritzker Signs Bill Making Illinois Second State To Repeal HIV Criminalization
• Missouri Loosens Laws Criminalizing HIV Transmission After 30 Years Of 'Faulty Assumptions'
• Nevada Just Struck Down Its Outdated, Discriminatory Laws Criminalizing HIV Transmission

What is notable about Illinois, it represents only the second state to completely repeal its HIV criminalization law, following Texas' repeal back in 1994. “The repeal of the HIV criminal law in Illinois is a tribute to the work of state activists and organizers that made it happen, and a welcome advancement in the broader work to repeal these discriminatory laws across the nation,” said Jada Hicks, The Center for HIV Law & Policy’s Supervising Attorney for Criminal Justice Initiatives.[5]

Photo Source: Fine Art America

The criminal justice system shouldn't be used as a public health tool, because that isn't what it is designed to do. Broadly, some disability advocacy groups seeking to transform the system want to eliminate the criminalization of public health issues. 

In fact, Joshua D. Blecher-Cohen makes the case about disability law and criminalization in The Yale Law Journal, "HIV-specific criminal laws violate the Americans with Disabilities Act’s (ADA) ban on discrimination by public entities." We agree. In fact, there is a strong argument that such criminalization laws not only violate the ADA, but also the Rehabilitation Act of 1973, as amended. 

HIV criminalization laws don't curb the transmission of sexual transmitted infections, but they do promote HIV-related stigma. HIV criminalization laws don't save money, because they actually put taxpayers on the hook for more costs from unnecessary incarceration. HIV criminalization laws don't protect people, yet they do increase the spread of misinformation. People living with HIV/AIDS deserve equal protection under the law! HIV-negative people deserve a more honest approach to public health! And the United States deserves better!

[1] Haseltine, William A (2020, October 21). Underfunding Public Health Harms Americans Beyond Covid-19. Forbes. Retrieved online at https://www.forbes.com/sites/williamhaseltine/2020/10/21/underfunding-public-health-harms-americans-beyond-covid-19/?sh=76b194a9419c#:~:text=Public%20health%20is%20consistently%20underfunded%20and%20often%20viewed,shorter%20lives%2C%20especially%20among%20those%20in%20lower-income%20brackets.

[2] Centers for Disease Control & Prevention (2020, December 21). HIV and STD Criminalization Laws. U.S. Department of Health & Human Services. Retrieved online at https://www.cdc.gov/hiv/policies/law/states/exposure.html.

[3] Prevention Access Campaign (2021, February). Undetectable = Untransmittable. Retrieved online at https://www.preventionaccess.org/undetectable.

[4] Centers for Disease Control & Prevention (2020, December 21). HIV and STD Criminalization Laws. U.S. Department of Health & Human Services. Retrieved online at https://www.cdc.gov/hiv/policies/law/states/exposure.html.

[5] The Center for HIV Law and Policy (2021, July 28). Illinois Becomes Second State to Repeal HIV Criminalization Laws. Retrieved online at https://www.hivlawandpolicy.org/news/illinois-becomes-second-state-repeal-hiv-criminalization-laws. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

Making U=U Foundational in Our Efforts to End the HIV Epidemic

By: Murray Penner, U.S, Executive Director, Prevention Access Campaign/U=U

Undetectable = Untransmittable, or U=U, was created in July 2016, BY people living with HIV (along with leading researchers and other advocates), FOR people with HIV. The U=U campaign is approaching the fifth anniversary of its launch. As such, it is the perfect time to expand the U=U message with an advocacy focus on how U=U contributes to ending the HIV epidemic. 

Photo Source: Prevention Access Campaign

The medications people with HIV take to stay healthy also make it impossible for them to pass on HIV. That’s because when people are on effective HIV treatment, their HIV is suppressed in the body to such low levels that it’s undetectable by most lab tests. And when one’s viral load is undetectable, HIV also is not transmitted through sex. 

The U=U message is revolutionary and has a positive impact on people’s lives and on ending the epidemic:  

• U=U improves the well-being of people with HIV, transforming their social, sexual, and reproductive lives.
• U=U reduces the anxiety associated with HIV testing and adds an incentive for people with HIV to start and stay on treatment and in care. 
• U=U dismantles stigma on individual and community levels. 
• U=U provides a strong public health rationale for universal access to treatment, care, and support services. We refer to this as the U=U public health strategy.   

The U=U public health strategy is important to use in advocacy efforts. It works like this: When people with HIV have the treatment, care, and support services they need to stay undetectable, they remain healthy, and they cannot transmit HIV through sex. In other words, care and treatment is good for the personal health of people with HIV and good for the public health of the community. 

Photo Source: The Lancet

In a recent article in The Lancet, prominent U.S. leaders called for action to end the HIV epidemic. Among other strategies, it prioritizes the inclusion of U=U in efforts to end the HIV epidemic. 

One strategy in The Lancet article states that “Advocates should be equipped to use the so-called public health argument from U=U in advocacy to increase access and remove barriers to quality health care; ensuring people with HIV have the treatment and services they need to achieve and maintain an undetectable viral load. This not only saves lives, but also is an effective way to prevent new transmissions.” In keeping with this recommendation, PAC has created this U=U resource for use in advocacy efforts.As we continue our focus on ending the epidemic, advocacy is critical to make U=U a foundational strategy of our efforts. U=U is essential for the well-being and health of people with HIV. And it’s also critical for ending the epidemic, because U=U also prevents transmission. 

Dr. Anthony Fauci, Director of NIAID at the NIH and chief medical advisor to President Joe Biden, says it best, stating that “U=U is the foundation of being able to end the HIV epidemic.”

Photo Source: NBC

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.

U=U – A Foundation for Ending the HIV Epidemic

By: Murray Penner, Executive Director, North America, Prevention Access Campaign

What many have thought for nearly 20 years is now an undeniable fact:  People living with HIV (PLWH) on effective treatment cannot transmit the virus to their sexual partners. This is the basis for Undetectable = Untransmittable, or U=U. You may know it, but in the United States, many PLWH, providers, policy makers, and the general public still don’t. This fact can transform lives and the field when communicated properly and represents a significant opportunity to help end the HIV epidemic.

There is an abundance of research supporting U=U, including PARTNER 1, in which both straight and gay couples had more than 58,000 condomless sex acts and PARTNER 2, in which gay male couples had more than 77,000 condomless sex acts. Both studies had zero linked HIV transmissions. Other research includes the Rakai, HPTN 052, and Opposites Attract studies, as well as the Swiss Statement that first published information about the risk of transmission being zero in 2008. This and other evidence is discussed in an online article at www.i-base.info/htb/32308.

Prevention Access Campaign (PAC) launched the U=U campaign through its consensus statement in July of 2016 and within three short years has achieved support from nearly 900 organizations in 98 countries. PAC is a community of people living with HIV, researchers, organizations, and other allies who share the common goals to end the dual epidemics of HIV and HIV-related stigma by empowering people with accurate and meaningful information.

Sharing the U=U message provides an unprecedented opportunity to improve the lives of people living with HIV and to dismantle HIV stigma. It has far-reaching public health implications for engagement across each stage of the treatment cascade and for expanding access to universal treatment and care to all people living with HIV so that they can benefit from viral suppression.
The basics rules of U=U are not complex.  It's about TLC:

1. Treatment – stay on Treatment as prescribed 
2. Labs – get Labs done regularly 
3. Connection – stay Connected to Care 

Words matter. In conveying the message that U=U, it is critical to be clear and definitive, which inspires confidence and doesn’t promote unnecessary doubts or fear. PAC recommends using easy to understand phrases such as “can’t pass it on,” “cannot transmit,” and “no risk." You can even say “zero risk.” Avoid phrases that may suggest even a slight risk like “nearly impossible,” “extremely low, “essentially no,” and “virtually impossible.” Any perceived window of risk, no matter how slight, may be considered “still a risk.” If you hear or see such ambiguous phrases being used, please speak out!

The U=U message is not copyrighted.  It belongs to everyone and is based on the science of treatment as prevention, pioneered in 2007 by Dr. Julio Montaner, who was also one of the earliest signatories to the U=U consensus statement. The phrase “Undetectable = Untransmittable (U=U)” was created by the community and researchers to easily convey the TasP science in a more definitive and empowering way.

As you create statements, videos, speeches, and/or newsletters, please keep in mind that millions of people don’t know about or believe U=U. Every communication is an opportunity for change. Make the information prominent so it has the best chance of being seen, not buried or near the end of a video where it could go unnoticed. U=U can be utilized in many messages:

• HIV stigma – U=U is the greatest opportunity we’ve had to dismantle it. 
• HIV treatment – U=U is an added incentive to start and adhere to treatment & to stay engaged in care. 
• Sexual and reproductive health – U=U means PLWH can have sex and conceive children without fear of transmission or alternative and expensive means of insemination. 
• Mental health – U=U reduces the fear and shame of transmission which has lifted people with HIV out of depression and social isolation. 
• HIV prevention – An undetectable HIV viral load only prevents HIV transmission to sexual partners. PrEP for HIV-negative individuals also prevents it. But these HIV-prevention tools do not prevent STIs and pregnancy. Using condoms helps prevent HIV transmission as well as other STIs and pregnancy. Choices for prevention methods may be different depending upon a person’s sexual practices, circumstances and relationships. For instance, if someone is having sex with multiple partners or is in a non-monogamous relationship, they might consider using condoms to prevent other STIs, while two individuals in a monogamous, sero-different relationship may choose U=U.
• Access to treatment and services – U=U is the public health argument for access. Everyone deserves to benefit from treatment. But people who do not achieve viral suppression must not be shamed or stigmatized either. Structural inequalities and social determinants of health make it difficult or impossible for far too many to reach viral suppression.   
• HIV criminalization – U=U is an important part of the modernization toolbox. 

Other items to keep in mind:

• Undetectable, synonymous with viral suppression, is under 200 copies/ml. 
• Achieving an undetectable viral load can take several months of ART. Once achieved, continued adherence is required. 
• U=U only applies to sexual transmission; there is not yet evidence about breastfeeding or needle sharing, although the U=U message should still be considered. 
• U=U may not exempt people with HIV from disclosure laws, which are unjust and bad for public health regardless of viral load. 

For more information on U=U or the Prevention Access Campaign, visit www.uequalsu.org.



Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association, but rather they provide a neutral platform whereby the author serves to promote open, honest discussion about public health-related issues and updates.