ViiV's Positive Perspectives Research Provides Insights to Patient-Provider Relationships

By: Ranier Simons, ADAP Blog Guest Contributor

The doctor-patient relationship is the cornerstone of healthcare. Patients cannot fully benefit from the many advances in medical science without a solid relationship with their provider, where they feel listened to and cared for. The relationship has been defined as “a consensual relationship in which the patient knowingly seeks the physician’s assistance and in which the physician knowingly accepts the person as a patient” (Chipedza et al., 2015). Mutual trust and vulnerability are required, especially regarding people who are living with HIV/AIDS (PLWHA). ViiV Healthcare recently released data from the third wave of its Positive Perspectives Research study (PP3), which examines the lived experiences of PLWHA globally. This wave of inquiry is heavily focused on improving health outcomes by digging into the interactions between PLWHA and their healthcare providers.

Photo Source: GoodTherapy

The current wave, PP3, will eventually include 3,000 participants. The newly released data is a result of the first 698 participants representing 16 countries, including the United States, United Kingdom, and Canada (Lutton, 2025). Eventually, it will cover 29 countries. Wave One surveyed 1,111 PLWHA and 250 of their partners, covering nine countries. Wave 2 involved 2,389 PLWHA covering 25 countries (ViiV, Press Release 2025). All the waves investigate various themes surrounding the lived experiences of PLWHA. PP3 aims to further define and raise the voices of PLWHA to improve healthcare outcomes by informing healthcare providers and other stakeholders of the realities of how PLWHA navigate their care and day-to-day lives.

Early PP3 data suggest an overarching theme of communication issues between PLWHA and their healthcare providers. The early findings indicate that there are strong levels of trust in PLWHA’s patient-provider relationships. Approximately 80% of those currently surveyed reported trusting their healthcare provider. (Lutton, 2025). However, while the trust is solid, there are reported weaknesses in areas such as patients' practical understanding of information and their inclusion in care decisions.

Photo Source: Doctor Patient Relationship

Although a high level of trust has been reported, 47.5% of PLWHA surveyed feel that their healthcare providers do not effectively listen to them, and 39.7% reported that they were not included in the choice of their antiretroviral regimen (ART) (ViiV, 2025). Successful HIV health outcomes are holistic, involving more than just a focus on viral suppression. Patients need to be able to fully express their values, preferences, and individual life circumstances to their healthcare providers. Empathy is associated with patient satisfaction and treatment adherence (James, 2023). When healthcare professionals truly listen, they can better understand how their patients interact with life, which is often vastly different from their own lives and familiar ways of thinking.

Part of ART selection is based on patients’ specific virological needs. However, there are nuances of selection that are influenced by patient preference when patients are fully informed of all their options. The preliminary study results indicated that 53% of patients were worried about long-term effects of ART (ViiV Press Release, 2025). ART comes in many different combinations of drugs with the potential for short-term and long-term side effects. Approximately 53% of respondents had ART-related weight gain as a side effect concern. It is essential for healthcare professionals to engage in transparent discussions about the aspects of different drug combinations, empowering patients to make informed decisions rather than leaving them to accept the physical manifestations of regimens that are unilaterally imposed upon them. Patients’ ability to be consistent with their regimen is also a consideration in education about all modalities, such as long-acting injectables. Approximately 43.2% of the current respondent group stated a disdain for daily medication because it was a daily reminder of their HIV status (ViiV Press Release, 2025). When patients feel fully included in their care, they are more likely to adhere to their medication schedule.

Photo Source: Patient Voices

A notable early revelation of the study is that the concept of undetectable equals untransmittable, or “U=U”, is not fully embraced or understood. Medical science has proven that PLWHA cannot transmit the HIV virus when they have reached and maintained an undetectable viral load. However, only 58% of respondents truly believed it. Approximately 93.7% knew U=U, but low uptake of it as a belief system means that many PLWHA are not empowered to fully live their lives without the guilt and stigma of embracing their relationships and sexual expression. Moreover, only 31.1% of patients were able to explain the concept of U=U to other people (ViiV Press Release, 2025). It is essential for healthcare providers to thoroughly educate PLWHA on the science behind U=U, enabling them to advocate for themselves and combat stigma within their social networks.

Wave three of the Patient Perspectives study is only partially complete. The goal of 3,000 participants will yield a more comprehensive picture of the patient-doctor relationship, providing healthcare professionals with an informed understanding of its strengths and weaknesses. Understanding what is being done well in comparison to areas needing improvement will enable providers to make effective changes to the status quo. Health literacy is influenced by socioeconomic status, age, racial and ethnic factors, and educational levels (Dawson-Rose et al., 2016). Once fully completed, PP3 will inform healthcare providers on how to facilitate improvements in patients’ health literacy, as well as bolster care professionals’ ability to step outside their own spheres of understanding into an empathetic place of true patient communication.

[1] Chipidza, F. E., Wallwork, R. S., & Stern, T. A. (2015). Impact of the Doctor-Patient Relationship. The primary care companion for CNS disorders, 17(5), 10.4088/PCC.15f01840. https://doi.org/10.4088/PCC.15f01840

[2] Dawson-Rose, C., Cuca, Y. P., Webel, A. R., Solís Báez, S. S., Holzemer, W. L., Rivero-Méndez, M., Eller, L. S., Reid, P., Johnson, M. O., Kemppainen, J., Reyes, D., Nokes, K., Nicholas, P. K., Matshediso, E., Mogobe, K. D., Sabone, M. B., Ntsayagae, E. I., Shaibu, S., Corless, I. B., … Lindgren, T. (2016). Building Trust and relationships between patients and providers: An essential complement to health literacy in HIV care. Journal of the Association of Nurses in AIDS Care, 27(5), 574–584. https://doi.org/10.1016/j.jana.2016.03.001

[3] James, T. (2023, January 12). Building Empathy into the Stucture of Health Care. Retrieved from https://postgraduateeducation.hms.harvard.edu/trends-medicine/building-empathy-structure-health-care#:~:text=Studies%20demonstrate%20how%20empathy%20improves,they%20feel%20heard%20and%20understood.

[4] ViiV Healthcare. (May 2025). Positive Perspectives Research. Retrieved from https://viivhealthcare.com/hiv-community-engagement/positive-perspectives-research/#:~:text=Wave%203%20survey

[5] ViiV Press Release. (2025, May 27). ViiV Healthcare Positive Perspectives 3 Study Finds Widespread Communication Barriers: Half of People Living with HIV Feel Unheard by Healthcare Providers Despite High Trust. Retrieved from https://viivhealthcare.com/hiv-news-and-media/news/press-releases/2025/may/positive-perspectives-survey/

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 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.

Fireside Chat Retreat in Nashville, TN Tackles Pressing Public Health Issues

By: Brandon M. Macsata, CEO, ADAP Advocacy Association & Jen Laws, Board Co-Chair, ADAP Advocacy Association

The ADAP Advocacy Association hosted its "Health Fireside Chat" retreat in Nashville, Tennessee among key stakeholder groups to discuss pertinent public health issues facing patients in the United States. The Health Fireside Chat convened Thursday, April 27th through Saturday, April 29th. The state of Tennessee cutting funding for HIV prevention, detection and treatment programs, a growing chorus calling for reforms to the 340B Drug Pricing Program, and the intersection between U=U (undetectable equals untransmittable) and reforming HIV criminalization laws were evaluated and discussed by the 24 diverse stakeholders.

The series was rebranded to encompass a broader focus on public health, changing from the HIV/AIDS Fireside Chat to the Health Fireside Chat. Unlike previous Fireside Chats, Nashville’s event added an “ice breaker” activity, themed in light of the hosting city – a line dancing lesson, as well as an informal town hall meeting convened in partnership with Positively Aware. The additional half day of activities — including the ice breaker, townhall meeting, and meet and greet — allowed attendees to settle into conversation expediently after having a solid hour of good laughs, encouragement, and bonding.

Photo Source: Getty Images

The townhall meeting, which was facilitated by Rick Guasco, Acting Editor-in-Chief of Positively Aware, started with recognition that Nashville was explicitly chosen as a hosting city due to the state of Tennessee’s rejection of federal HIV prevention dollars. While a later discussion was specific to that issue, the town hall dug into underlying (and broader) concerns around systemic discrimination as a driver of today’s HIV epidemic. Digging into how racism, as an example, manifests can be a touchy subject in any group, even among those who generally align. Such a charged set of topics, especially among HIV’s thought-leadership, can and does lead to transformational moments, particularly because creating a space of “internal” advocacy provides a chance for us to experience, and navigate, conflict amongst ourselves. That conflict and navigation also provides us a chance to grow together and to break down silos of interest, work, and thought. And this townhall did exactly that.

The Health Fireside Chat included moderated white-board style discussion sessions on the following issues:

• Tension in Tennessee: Is an HIV Access to Care & Treatment Crisis Looming? — moderated by Jeffrey S. Crowley, Distinguished Scholar/Program Director, Infectious Disease Initiatives at the O'Neill Institute/Georgetown Law
• 340B Drug Discount Program: The Issues Spurring Discussion, Stakeholder Stances, and Possible Resolutions? — moderated by Kassy Perry, President & CEO, Perry Communications Group
• U=U: Is 'Undetectable Equals Untransmittable' Changing the Landscape for HIV Criminalization Laws? — moderated by Murray Penner, Executive Director, U=U plus, and S. Mandisa Moore-O'Neal, Executive Director, The Center for HIV Law & Policy

The discussion sessions were designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Health Fireside Chat. The following represents the attendees:

• Guy Anthony, President & Founder, Black, Gifted & Whole Foundation
• Jeffrey S. Crowley, Distinguished Scholar & Program Director at the Infectious Disease Initiatives, O'Neill Institute for National and Global Health Law, Georgetown Law
• Brady Etzkorn-Morris, Executive Assistant for Global Operations, Prevention Access Campaign
• Earl Fowlkes, President & CEO, Center for Black Equity
• Rick Guasco, Acting Editor-in-Chief, Positively Aware 
• Hilary Hansen, Global Public Affairs Head, Oncology, Sanofi
• Kathie Hiers, President & CEO, AIDS Alabama
• Marcus Hopkins, Founder & Executive Director, Appalachian Learning Initiative
• Mark Hubbard, Patient Advocate
• Vanessa Lathan, HIV Health Policy Director, Black Ladies in Public Health
• Jen Laws, President & CEO, Community Access National Network
• David Wyley Long, Change The Pattern Associate, Southern AIDS Coalition 
• Brandon M. Macsata, CEO, ADAP Advocacy Association
• Judith Montenegro, Program Director, Latino Commission on AIDS
• Mandisa Moore-O’Neal, Executive Director, Center for HIV Law & Policy
• Warren O’Meara-Dates, Founder & CEO, The 6:52 Project Foundation
• Murray Penner, Executive Director, U=U plus
• Kassy Perry, President & CEO, Perry Communications Group
• Amanda Pratter, Associate Director, Policy Advocacy and Alliances, Gilead Sciences
• Gwen Rathbun, Associate Director, Alliance Development, Merck
• Alan Richardson, EVP of Strategic Patient Solutions, Patient Advocate Foundation
• Donna Sabatino, Director State Policy & Advocacy, The AIDS Institute
• Andrew Scott, Director of Strategic Alliances and Issue Advocacy, Bristol Myers Squibb
• Robert Suttle, Patient Advocate

The Covid-19 pandemic is still ongoing. Covid-19 has killed at least 1,129,573 people and infected over 104 million in the United States since January 2020, according to data by the Centers for Disease Control & Prevention (CDC).

With that in mind, the ADAP Advocacy Association implemented strong Covid-19 safety protocols for the Health Fireside Chat, which included proof of vaccination/booster, robust self-administered testing (prior to travel, upon arrival, and after returning home), complimentary rapid self-test kits and hand sanitizer for each of the attendees, as well as guidelines for masks on commercial travel to the event, and optional masks during the sessions (which some attendees exercised without feeling shunned). 

 The ADAP Advocacy Association is pleased to share the following brief recap of the Health Fireside Chat.

Tension in Tennessee:

The first policy session, “Tension in Tennessee: Is an HIV Access to Care & Treatment Crisis Looming?”, lead by the O’Neill Institute’s Jeffrey S. Crowley, invited local advocates to discuss their internal view of Tennessee’s “troubles” with some national advocacy representation. While much of the discussion focused on the details of local communication and national assumptions, some discussion on how the state may implement its newly allocated funding (will the state’s budget continue to fund prevention efforts next year?), much of the conversation that followed was explicitly about how local advocates can communicate and collaborate with national advocacy efforts. What became clear from that conversation is much of the national and state level advocacy we tend to reflect fondly of when speaking on decades past is relatively fragile and not well-coordinated. Planning bodies have diminished to largely being provider groups and some don’t even meet – despite a statutory requirement to do exist. An attendee with capacity building expertise pointed out the need for investment in this space. Many planning bodies have been weakened by atrophy, others have faced a demographic shift (and as a result a change in the barriers and assistance needed in order to appropriately activate affected community). The discussion as a whole highlighted the extreme silos working against a cohesive and collaborative advocacy network necessary to support ending the HIV epidemic.

Photo Source: Rolling Stone

 The following materials were shared with retreat attendees:

• "Tennessee’s Rejection of $8.8 Million in Federal Funding Alarms HIV Prevention Groups," Ava Sasani, New York Times, March 24, 2023
• "A Dangerous Precedent: Tennessee Rejects Federal Funds for HIV Prevention," amfAR, January 20, 2023
• "How Tennessee Illustrates the Three Rules of MAGA," David French, New York Times Subscriber-Only Newsletter, April 13, 2023

The ADAP Advocacy Association would like to publicly acknowledge and thank Jeffrey S. Crowley for facilitating this important discussion.

340B Drug Discount Program:

340B remains an important issue for HIV advocates. As such, “340B Drug Discount Program: The Issues Spurring Discussion, Stakeholder Stances, and Possible Resolutions?“ was the focus of the second policy session. Some of the advocates in attendance knew little about the program, so the discussion provided an excellent educational opportunity on how the discount drug program works. Laser focused on issues of health equity, Kassy Perry of Perry Communications Group lead the group to dig in – and quickly. Advocates less familiar with 340B were readily able to identify the need for reform when assessing reductions in charity care and increases in medical debt. The group readily recognized 340B as a powerful tool toward addressing health disparities, especially economic consequences for patients, and where those consequences can and do negatively impact entire areas of patients’ lives. Attendees from industry partners listened intently as advocates described their concerns and the need for the program to better reflect the intent in which it was established. Equally important, what is being proposed in New York has alarmed both patients and providers alike.

There was considerable conversation over the news about a new coalition, designed to support true safety-net providers and the communities they serve. The Alliance to Save America’s 340B Program (ASAP 340B) is a partnership of community health centers, patient, provider, and consumer advocates, and leaders from the biopharmaceutical industry. The ADAP Advocacy Association and the Community Access National Network have joined the alliance, and numerous groups in attendance expressed interest in also joining the fight to make 340B reflect the needs of patients, and not hospitals and mega providers. 

Photo Source: CANN YouTube Channel

The following materials were shared with retreat attendees:

• California Healthline: “Community Health Centers’ Big Profits Raise Questions” | Do Some Centers Exploit 340B Dollars | (8/15/22)
• Gay City News: “Providers Urge State to Keep 340B Drug Discount Program Intact” | NYRx & Impact on State Clinics | (3/31/23)
• Niagara Frontier Publications: “NYRx: NYS Launches New Statewide Medicaid Pharmacy Benefit Program” | $705M to Make Clinics “Whole” | (4/3/23)
• Buffalo News: “Another Voice: Changes to New York’s Medicaid Pharmacy Benefit are Essential” | NY State Medicaid Director Argues for NYRx | (3/29/23)
• Axios: “To 340B or Not to 340B” | Status of Legislative Action on 340B | (12/8/23) **Full text pasted below due to paywall
• American Legislative Exchange Council: “The 340B Program and State Mandates” | Price-Fixing in State Legislatures Isn’t a Solution | (3/2/23)
• MedCity News: “Court Ruling Leaves 340B Providers Waiting for Clarity About the Use of Contract Pharmacies” | Curtailing Massive Contract Pharmacy Expansion | (3/26/23)
• 340B Report: “Hospitals Shouldn’t Fear 340B Reporting Requirements, House E&C Republicans Say; Democrat Matsui Raises Concern About Scapegoating” | Accountability is First Step Toward 340B Reform | (4/4/23) **Full text pasted below due to paywall
• Augusta Free Press: “Rep. Spanberger Continues Legislative Fight to Protect 340B Program” | The Preserving Rules Ordered for The Entities Covered Through (PROTECT) 340B | (4/6/23)
• 340B Report: “Arkansas and 340B Providers Ask Appeals Court to Back State’s Novel 340B Contract Pharmacy Law” | Status of Arkansas’ 340B Lawsuit | (4/11/23) 
• Alliance for Integrity & Reform of 340B (AIR340B): “Learn more” | Coalition of advocacy groups, clinicians, and innovators committed to reforming and strengthening the 340B program
• 340B Health: “Learn more” | Membership organization of more than 1,400 hospitals and health systems
• Alliance to Save America’s 340B Program (ASAP 340): “Learn more” | An alliance between the biopharmaceutical industry and community health centers
• STAT News: “An unlikely new 340B alliance emerges between PhRMA and community health centers” | ASAP 340B to Push Reforms | (3/9/23) **Full text pasted below due to paywall
• 340B Report: “AHA Again Blasts PhRMA and NACHC’s Alliance to Remake 340B” | American Hospital Association Goes on the Offense | (4/11/23) **Full text pasted below due to paywall

The ADAP Advocacy Association would like to publicly acknowledge and thank Kassy Perry for facilitating this important discussion.

Editor's Note: The ADAP Advocacy Association has offered opinions on 340B over the last several years, including Industry’s Changes to 340B Drug Discount Program (April 2022), 340B – Reply Hazy, Try Again (January 2020), The Federal 340B Program: A Call to Order (March 2019), and 340B Program: Don't Throw the Baby Out with the Bathwater (March 2017)

U = U:

The final policy session, “U=U: Is 'Undetectable Equals Untransmittable' Changing the Landscape for HIV Criminalization Laws?“, focused on the intersection of issues between U=U and reforming HIV Criminalization Laws with the conversation hosted by Mandisa Moore-O’Neal, executive director of the Center for HIV Law and Policy, and Murray Penner, executive director of U=U Plus. Mandisa shared with the group the exceptional nature of HIV criminalization laws, but also how general criminal codes are out of date, furthering the HIV epidemic, and nearly exclusively used against Black and Brown people living with HIV. Mandisa also discussed how these laws can and are leveraged to further domestic violence (and coercive control). Murray then discussed how laws which allow for “affirmative defenses” only help those people living with HIV which can readily access and maintain care. All of which emphasized that the design of these laws assume that because someone is living with HIV, they are necessarily presumed “guilty”. Advocates discussed how to break silos, including the potential to partner in prosecutor and public defender education efforts. Advocates focused on health or with strong relationships with their local health departments, for example, might wish to participate in education efforts alongside legal advocacy organizations or a state Bar.

Photo Source: CHLP

The following materials were shared with retreat attendees: 

• Map: HIV Criminalization in the United States, CHLP (updated 2022)
• U.S. HIV Laws and Prosecutorial Tools, CHLP (updated 2022)
• What is the Consensus Statement on HIV "Treatment as Prevention" in Criminal Law Reform?, CHLP (updated 2022)
• WHAT DOES ABOLITION HAVE TO DO WITH HIV DECRIMINALIZATION AND MODERNIZATION?, Positively Aware (2020)
• Viral Load Does Not Equal Value, POZ (2019)
• Undetectable equals untransmittable (U = U): awareness and associations with health outcomes among people living with HIV in 25 countries, BMJ Journals (2021)
• Undetectable = Untransmittable (U = U) Messaging Increases Uptake of HIV Testing Among Men: Results from a Pilot Cluster Randomized Trial, NIH (2021)

The ADAP Advocacy Association would like to publicly acknowledge and thank Murray Penner and Mandisa Moore-O'Neal for facilitating this important discussion.

Additional Fireside Chats are planned for 2023 in Philadelphia, Pennsylvania, and New Orleans, Louisiana.

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.

HIV/AIDS Patient Advocacy: 2023 Insights

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

The New Year is here! Our patient advocacy work is likely to be influenced by numerous mitigating factors that fall completely outside of our control, most of which will make meaningful public health policy changes unlikely. A narrowly divided, partisan federal government, an indictment of a former president (pick a crime), an increase in anti-science rhetoric fueled by right-wing media and Internet-fueled conspiracies, and the ongoing economic uncertainty will all muddy the legislative agenda. But that is no reason to remain idle.

Photo Source: FreePik.com

The Covid-19 pandemic isn't over, especially here in the United States. According to the Kaiser Family Foundation, as of December 22, 2022, over 400 people in this country are still perishing daily to this virus. Aside from the human toll of the cumulative effect of the infections, hospitalizations, and deaths, Covid-19 has upended public health in so many ways. Its impact on our own HIV community cannot be overstated, as we outlined last year. Covid-19 also further exposed the significant gaps that remain in our HIV care delivery system. It has also defined the shape of the broader public health advocacy over the last three years.

Lest we forget there are still nefarious forces at play trying to undermine our drug supply chain with counterfeit medicines, evidenced by numerous high-profile cases involving fake HIV medicines. With our partners, we will continue to advise patients on how to spot fake HIV medicines. It is imperative that patient advocates resist ongoing attempts to reshape the national dialogue on drug pricing with faux policies, such as drug importation. The reality is drug importation won't lower the cost of prescription drugs for patients, but it could very well weaken the world's safest drug supply system. Look no further than the drug importation plans in Florida and Colorado. 

Our focus will also remain on improving access to care and treatment, expanding it as much as possible while fending off threats to the Ryan White HIV/AIDS Program (RWHAP). We fully anticipate another attempt by mega service providers and special interests to push for raiding RWHAP funding for PrEP-related rebates under the 340B Drug Pricing Program. Robbing Peter to pay Paul is never the solution, because the result is restricting access. We stand firm with people living with HIV/AIDS.

Long-acting agents for HIV therapy (LAAs) represents probably the single greatest opportunity to expand access, reduce community viral load, and further the U=U Gospel ("undetectable equals untransmittable"). The recent news by the U.S. Food & Drug Administration (FDA) to approve a new HIV drug for adults with limited treatment options is big news! It builds on the momentum already established with new LAAs, such as Cabenuva and Trogarzo. 

As the chaos continues to unfold in our nation's capitol, it is imperative for patient advocates to be armed with the resources and tools to influence public policy on HIV/AIDS. Our organization is eager to engage our community to meet any challenge head-on.

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.

Start Antiretroviral Therapy Sooner Than Later

By: Ranier Simons, ADAP Blog Guest Contributor

As medical science strives towards eradicating HIV, research and discourse regarding treatment and prevention continue to evolve. Antiretroviral therapy (ART) is the primary method of treatment. ART is drug therapy consisting of various combinations of medications whose purpose is reducing the HIV viral load in the body. The ultimate goal is to reduce the viral levels in the body to the point of being undetectable. Undetectable means that the viral load is so low that a viral load test cannot detect it.[1] Reaching undetectable status means that a person has no risk of sexually transmitting HIV to others, commonly referred to as "U=U" (undetectable equals untransmittable). Research has also shown that maintaining undetectable status enables people living with HIV/AIDS (PLWHA) to live long, healthy lives. 

Photo Source: Very Well Health

The timeline of starting patients on treatment is an ongoing inquiry at the forefront of ART discourse. In addition to viral load, historically, many other factors have been considered when starting PLWHA on drug therapy. Those who are asymptomatic and seemingly very healthy with good CD4 counts sometimes don’t see the benefits of starting early treatment out of concerns about possible long-term side effects and emotionally handling the prospect of lifetime medication adherence.[2] Notwithstanding various psychosocial, financial, and logistical issues, the main clinical criteria inquiry is the CD4 count. 

CD4 cells are white blood cells in the body that help the immune system to fight infection. HIV attacks and destroys CD4 cells.[3] An insufficient number of CD4 cells leaves the body susceptible to many forms of illness that healthy HIV-negative people are protected against. PLWHA are diagnosed with AIDS when the CD4 count reaches 200 cells/mm3.AIDS diagnosis means a high risk of developing life-threatening illnesses or even cancers.

Over time consensus has evolved regarding the appropriate CD4 count threshold for beginning ART. For a long time, the established guidelines recommended ART to begin when CD4 counts dropped below 350 cells/mm3 or if a patient had symptoms of AIDS. In December 2009, U.S. guidelines were issued, including a recommendation that ART commences if the CD4 count is between 350 and 500 cells/mm3.[4] However, that recommendation was based on observational studies, not randomized trials, in the manner that previous guidelines were developed. A randomized trial results in more definitive information since randomization means groups tested are very similar except for received treatment.[4]

To obtain randomized trial results concerning early ART intervention, the Strategic Timing of Antiretroviral Therapy (START) trial was first initiated in 2009, enrolling 4,684 HIV-positive patients (median age 36, 27% women), who had a CD4 count of ≥500 cells/mm3 (median 651 cells/mm3 ) at least two weeks apart within the 60 days before enrollment. Of these patients, 2,325 were randomized to start ART immediately, and 2,359 were randomized to defer treatment until their CD4 count was ≤350 cells/mm3.[5] Subjects were followed for a minimum of three years. START is a multinational endeavor.

Photo Source: everydayhealth.com

In 2015, results were published in the New England Journal of Medicine. Data showed that early initiation of ART lowered the risk of severe AIDS-related outcomes, serious non-AIDS-related outcomes, and death by 57%.[4] When the results were published, the subjects who had previously been in the deferred ART group started drug therapy. Another analysis was done in October 2022, which included 4,436 patients who were followed from January 2016 through December 2021. This analysis supported the benefits of starting ART early, even for patients with CD4 counts over 500 cells/mm3 at diagnosis. An additional finding was that adverse outcomes of delayed treatment were more pronounced in patients aged 35 and younger.[4] Research is continuing to examine the outcome difference by age.

Given that the START study shows the importance of early initiation of ART, it is imperative to increase efforts to identify HIV-positive patients. Many people don’t find out until clinically, a lot of damage has occurred. By increasing testing efforts, especially for those in higher-risk groups, HIV infection can be caught at earlier stages, and patients can initiate therapy. Early therapy means a much lower risk of AIDS progression, fewer instances of non-AIDS-related serious issues, and shorter time spans to reaching undetectable status. Diagnosing people earlier means a better quality of life for those infected and an expedited reduction in the number of people with viral loads high enough to be a transmission risk.

[1] National Institute of Health. (2021, August 16). HIV Treatment. Retrieved from https://hivinfo.nih.gov/understanding-hiv/fact-sheets/when-start-hiv-medicines#:~:text=When%20is%20it%20time%20to,possible%20after%20HIV%20is%20diagnosed
[2] Ross, J. et al. (2021) How early is too early? Challenges in ART initiation and engaging in HIV care under Treat All in Rwanda-A qualitative study. PloS one, 16(5), e0251645. https://doi.org/10.1371/journal.pone.0251645
[3] National Institute of Health. (2022, August 22). CD4 Lymphocyte Count. Retrieved from https://medlineplus.gov/lab-tests/cd4-lymphocyte-count/
[4] Hein, I. (2022, October 25). Start HIV Antiretroviral Therapy ASAP, Experts Urge. Retrieved from https://www.medpagetoday.com/meetingcoverage/idweek/101419
[5] National Institute of Health. (October 4, 2022). Strategic Timing of Antiretroviral Treatment (START). Retrieved from https://clinicaltrials.gov/ct2/show/study/NCT00867048

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. 

Ending the HIV Epidemic Hindered by Negative Attitudes, Misinformation & Stigma

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

Is the United States' Ending the HIV Epidemic (EHE) being stymied by the American public's long-standing negative views on HIV/AIDS, largely fueled by misinformation and stigma? A recent national survey suggests the answer to that question is an unfortunate yes. The EHE initiative's four science-based strategies - Diagnose, Treat, Prevent, and Respond - apparently have an uphill battle against bigotry, fear and ignorance. 

Less than half of the American public (48%) consider themselves knowledgeable about HIV, which is slightly less than polling done the previous year. One-in-two non-LGBTQ people surveyed (53%) expressed hesitation receiving care from an HIV-positive medical professional, and one-third (35%) held similar attitudes about an HIV-positive teacher.[1] These attitudes reflect opinions held in 2021, not 1981.

Photo Source: GLAAD

The report, “The State of HIV Stigma 2021,” was spearheaded by GLAAD, Gilead Sciences and the Southern AIDS Coalition. Addressing the challenges laid out in the report, GLAAD summarized: "The findings reflect a vast lack of understanding of HIV and how it can be prevented, as well as significant discomfort and unfounded fear about people living with HIV. The Deep South has the highest rates of HIV diagnosis, yet the study reveals that the U.S. South also has some of the highest discomfort levels pertaining to the virus. This is a perfect storm for the perpetuation of misinformation."[2]

So much has been accomplished in the fight against HIV/AIDS since the 1990s with the advent of the highly active antiretroviral therapies (HAART), culminating with the growing acceptance of the science behind U=U ("Undetectable equals untransmissible"). Yet according to the GLAAD report, only 42% knew that someone properly following an antiretroviral drug regimen can’t transmit the virus.[3]  If making U=U foundational in our efforts to end the HIV epidemic is required, then we have much more work to do.

Photo Source: GLAAD

Sadly, among straight, cisgender respondents, half appeared to have closed to door to loving a partner or spouse living with HIV. HALF! Maybe even more troubling is over one-third of the LGBTQ community expressed similar reservations.[4]

The South and Midwest regions of the country reflected higher levels of these negative attitudes, which also correlate with a culture of shame and greater prevalence of HIV criminalization laws.[5] Stigma continues to be a major hurdle in the ongoing efforts to educate Americans about HIV/AIDS. These efforts are further hindered by the incendiary language used by Donald J. Trump about Haitian immigrants and AIDS, or the insensitive, homophobic language used by rapper DaBabby about people living with HIV/AIDS, or the cruel "clean" characterization used by men on gay dating and hookup apps and websites. 

The media isn't without blame here, either. Approximately 6 in 10 Americans get their information about HIV/AIDS from the media.[6] Fortunately, GLAAD's report indicates "56% of non-LGBTQ respondents noted they are seeing more stories about people living with HIV in the media."[7]

"Measuring American attitudes toward HIV and the impact stigma has on people living with HIV" is at the heart of the GLAAD report,[8] and their efforts to monitor the country's mood on this issue is of paramount importance. The success, or failure, of the public policy strategies being employed to end the HIV epidemic will largely depend on combating negative attitudes, misinformation, and stigma.

[1] Kumamoto, Ian (2021, August 26). Half of Americans still don't know shit about HIV — and it's a real problem. MIC. Retrieved online at https://www.mic.com/life/people-know-even-less-about-hiv-than-they-used-to-according-to-new-research-84167181
[2] GLAAD (2021). 2021 State of HIV Stigma Study. Retrieved online at https://www.glaad.org/endhivstigma 
[3] Avery, Dan (2021, August 26). Half of Americans say they’d avoid an HIV-positive doctor. NBC News. Retrieved online at https://www.msn.com/en-us/news/us/half-of-americans-say-theyd-avoid-an-hiv-positive-doctor/ar-AANM01E?ocid=st
[4] GLAAD (2021). 2021 State of HIV Stigma Study. Retrieved online at https://www.glaad.org/endhivstigma
[5] Avery, Dan (2021, August 26). Half of Americans say they’d avoid an HIV-positive doctor. NBC News. Retrieved online at https://www.msn.com/en-us/news/us/half-of-americans-say-theyd-avoid-an-hiv-positive-doctor/ar-AANM01E?ocid=st
[6] McCrea, Megan (2020, April 25). How the Media Shapes Our Perception of HIV and AIDS. Healthline. Retrieved online at https://www.healthline.com/health/media-and-perception-of-hiv-aids 
[7] GLAAD (2021). 2021 State of HIV Stigma Study. Retrieved online at https://www.glaad.org/endhivstigma
[8] GLAAD (2021). 2021 State of HIV Stigma Study. Retrieved online at https://www.glaad.org/endhivstigma

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.