TABLE OF CONTENTS
HANC ANNOUNCEMENTS
NETWORK ANNOUNCEMENTS
HANC PROGRAM UPDATES
CONFERENCES AND MEETINGS
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You Only Have to Tell the Truth:
Recommitting to Person-Centered Care
Keynote address delivered at the American Conference on the Treatment of HIV in Chicago, IL
Brian Minalga, HANC Deputy Director
May 1, 2025
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Excerpt from HANC Deputy Director Brian Minalga's keynote address at ACTHIV 2025:
"As people working in HIV healthcare and research, we can all think of times where “personal truths” and “political truths” have shaped decision-making, sometimes at the cost of objective, scientific truth. But it’s not happenstance that the work of HIV care is and must be grounded in the third level of truth, objective truth; it is so because people’s lives depend on it. Telling the truth—the objective truth—is person-centered care. Listening to people and their own goals for their health and wellness. Centering pleasure, not morbidity. Empowering people with information so they can make informed decisions for themselves. This is what telling the truth and centering people looks like.
So you see how telling the truth sounds easy on the surface. But in reality, there may be consequences to telling the truth. When telling the truth is punished with loss of funding and jobs, it can be easy to fall victim to the notion that the truth is a dangerous enemy.
But I would argue that the foundation of person-centered care is telling the truth. I would argue that that the truth is the greatest tool we have against oppression, deceit, and propaganda. And I would argue that any actions we take that deviate from the truth—no matter how inconsequential they may seem—only serve to undermine our purpose, our own futures, and the futures of the communities we have pledged to serve. If we compromise on the truth, how can we expect people to trust us? And without truth and without trust, what do we have left? Person-centered care is not possible without an indefatigable commitment to the truth.
Silence, erasure, acquiescence…in my opinion, these are not sustainable strategies, and they’re not person-centered strategies. At this moment in history, it’s my belief that we need a movement of radical intolerance for any action that seeks to undermine the truth, and any action that seeks to harm the most precious part of our work: people. Lest we forget, here at the American Conference for the Treatment of HIV, that the first letter in HIV stands for Human.
People are at the center of everything we do—not politics, not publications, not fame or fortune. Our work is inherently people-centered. The question is how we best commit ourselves to the people we serve. And I say that the truth is the best place to start."
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HANC Deputy Director Brian Minalga with panelists.
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Brian Minalga and Activists Asa Radix and Jim Pickett.
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The NEXUS Spotlight: New Investigator
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Dr. Ronnie Kasirye
Investigator
Makerere University-Johns Hopkins
Research Collaboration
Kampala, Uganda
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Cat Banobi, Legacy Project Manager and facilitator of the New Investigators Working Group, had the pleasure of uplifting Investigator Dr. Ronnie Kasirye and his work in Uganda. Dr. Kasirye is passionate about HIV and aging. Gain insight into his contributions to the field in sub-Saharan Africa.
Describe your role and affiliation, and HIV work background!
As part of the ACTG International HIV Investigator Mentoring Program (IHIMP) award, I am working on a study whose aim is to determine the causes and incidence of hospitalization among older people with HIV (PWH). This study is a sub-analysis of data from a well-characterized cohort of older adults with HIV who were part of the HIV Infection, Aging, and Immune Function Long-term Observational Study (HAILO). I am also an investigator on a study evaluating the role of pathogen reduction technology in reducing transfusion transmitted infections (including HIV) in making blood transfusion safer. This study is based at Makerere University-Johns Hopkins Research collaboration (MUJHU), Kampala Uganda.
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Tell us about your experience in ACTG's IHIMP and how that contributed to your career path
Being a part of the IHIMP has been a very rich experience. I have had regular interactions and guidance from my mentors Profs. Philippa Musoke and Kristine Erlandson as well protected time to work on my research ideas. I have had additional trainings in statistics, resource mobilization and grant writing. As a member of the Underrepresented Populations Committee, I have learnt of the efforts by the ACTG to ensure that vulnerable groups are represented in trial participation and leadership. I have also attended and participated in international conferences and workshops through which I have learnt about the latest HIV research and networked with researchers from all over the world.
Share a career highlight.
A resent career highlight was giving an oral presentation on hospitalizations among older PWH at the HIV and Aging workshop 2024.
How do you hope to contribute the field of HIV research?
I have a keen interest in aging with HIV particularly in sub-Saharan Africa. I plan to apply for research grants and publish the findings so as to contribute to the knowledge in this field.
What profession other that your own would you like to attempt?
Architecture. I am fascinated by building design but it is probably too late for that.
What sound or noise do you love? Why?
The sound of my alarm clock. It signals the start of a new day.
We're glad Dr. Kasirye gets up everyday to answer the call of a new day. Thank you for the insight on your valuable research and commitment to the field of HIV and aging globally.
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Follow Legacy Project on Social Media
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Long Term Survivors Day, observed annually on June 5th, serves as a poignant reminder of the resilience and ongoing challenges faced by individuals living with HIV/AIDS for extended periods. This observance is crucial in acknowledging their journey, celebrating their perseverance, and highlighting the evolving landscape of HIV care and research. Originating from the advocacy efforts of early AIDS activists, particularly in the United States during the late 1980s, Long Term Survivors Day was formally established to recognize those who have survived the epidemic's darkest days and continue to inspire advancements in treatment and support services. Today, it stands as a testament to both medical progress and the enduring spirit of those affected.
Members of the ACTG community reflect on the significance of this day and share what it means to them personally.
HIV activism transformed medicine as a whole, giving rise to peer support, patient-centered care, and research models that shape public health today. As LTS and advocate Jeff Taylor puts it, “Our history proves that people living with HIV are not victims, they are leaders.”
Christopher Tunstall, also a long-term survivor, echoes this sentiment: “We will not allow history to repeat itself. We will scream at the top of our lungs from all corners of the world to sound the alarm and inform the masses that cutting funding for critical health initiatives is a catastrophe in the works.”
"We no longer see a future—we only reflect on yesterday."— Benedict Sandile Khumalo, Long-Term Survivor and Community Advocate for South Africa.
"I think Long-term survivor day actually gives an opportunity to showcase the advancement in medical care. It also has an opportunity to represent hope for those newly diagnosed with HIV or those living with HIV. Trying to come to terms with a new journey. To see the faces and hear the stories of those that have traveled the journey before them and have survived and thrived, creates a world of possibilities they may not have imagined." Graig Cote
"HIV Long-term Survivors Awareness Day is important to me because it's easy to remember and thank those long-term survivors [pre-1992 & protease inhibitors] HIV/AIDS who continue to be contributing members to their Community-of-Choice." Robert Toth
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IMPAACT 2041 Protocol Version 1.0 was distributed to sites on 29 April 2025. IMPAACT 2041 study is evaluating the safety and pharmacokinetics of glecaprevir/pibrentasvir in women with hepatitis C during pregnancy. This study will take place in the U.S., and first participants are expected to enroll later this year.
The IMPAACT Network Annual Meeting will be held virtually, during the week of 7 September 2025. Registration and agenda details will be shared once available.
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Behavioral and Social Sciences
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Greg Davis
HANC
Project Manager
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Behavioral Science Consultative Group (BSCG): The BSCG continues to focus on two projects. Both projects are advancing and should wrap up in the next couple of months. An announcement will be made when the measures coordination project is available.
Financial Disclosure Working Group: The group will finalize the FDCOI SOP in the upcoming weeks. The annual solicitation will occur on September 19, 2025.
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Greg Davis
HANC
Project Manager
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Russell Campbell
HANC Director
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Community Partners (CP): CP is currently focused on two different projects. Ad-hoc groups have been formed for each project. One group is developing a cross-network CAB onboarding package that will provide general information for new CAB members. The group has developed an outline and will finalize the outline on their next call. The second project is focused on updating the Recommendations for Community Engagement document. Both projects are moving forward and should be completed by the end of summer.
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Cross-Network Coordination
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Kathleen Pescasio
HANC Cross-Network
Project Manager
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The Cross-Network Site Coordinators Working Group (SCWG) recently met with DAIDS representatives to share experiences with the EIS policy change. The group will continue to discuss best practices for meeting validation summary requirements.
The Data Management Center Working Group (DMCWG) shared highlights from the HVTN Full Group Meeting and discussed plans for upcoming virtual annual meetings. The group continues to discuss social media and communications-related activities.
The Cross-Network Communications Working Group (CWG) continues to hold discussions about the DAIDS AE Grading Table and study engagement systems. The DMCWG is also working on convening the Pregnancy Outcomes Data Working Group next month.
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Tyler Brown
HANC Laboratory
Project Manager
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The CNCPL Lab Discussion Group met in May to discuss a number of topics, including strategies to minimize carryover, best practices for sample handling, and new approaches to specificity testing in method development.
The Lab Focus Group (LFG) met in May to discuss topics including the impacts of NIH policy changes on lab sites and plans to survey sites about lab document archiving practices.
The Lab Focus Group (LFG) met with the DAIDS Clinical Lab Oversight Group (DCLOT) in May to discuss ways to work around disruptions to the protocol analyte list (PAL) review process.
Reminder: In March, HANC worked with the four Network Lab Centers and DAIDS Clinical Laboratory Oversight Team (DCLOT) to revise and publish a new version of the Terminology Criteria and Responsibilities for Reporting DAIDS GCLP Laboratory Audits or Initial Assessments. The new document can be accessed on the HANC public website by clicking here
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Reminder: HANC has published a new version of the Cross-Network PBMC Processing SOP (Version 7.0)! The updated SOP is now available on the HANC website for public access in English, Spanish, Portuguese, Vietnamese, and Thai. You can access the new document here. If you have any questions or need further information, feel free to reach out to us at
tdbrown3@fredhutch.org.
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Brian Minalga
HANC
Deputy Director
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Cat Banobi
Legacy
Project Manager
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Gabriella Olague
HANC
Project Coordinator
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May 29 - June 1: Brian represented HANC at the National Transgender Health Summit in San Francisco, CA where they presented, “The TGD Scorecard: Addressing Trans Erasure in HIV Clinical Trials” on Saturday, May 31.
June 23-25: Brian is representing HANC at the National Cluster Detection and Response (CDR) Implementation Learning Collaborative Summit in Atlanta, GA, where they are presenting on several different topics including CDR communications strategies and community engagement.
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U.S. Conference on HIV/AIDS (USCHA) 2025 (Washington DC)
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