New York, New York
Interview with Orbit Clanton, Outgoing Co-Chair of the ACTG Global Community Advisory Board (GCAB), Columbia University CRS, New York City
Orbit could you share your experience as the Co-Chair of the GCAB?
I brought real personal life experiences to my role as community co-chair, having been involved with the ACTG Network/Community for over two decades. My journey with the ACTG first began when I was invited to join my local site at Columbia University CAB as a member and then asked to screen to see if I met the inclusion criteria to become a candidate to be a participant in the study AIDS Clinical Trials Group Longitudinal Linked Randomized Trials (ALLRT) A5001, and later transitioned into the sub-study trial from ALLRT parent protocol to the HIV Infection and Inflammation (HAILO) A5322.
When elected as community co-chair, I brought my lived experience to the ACTG community. My role was to communicate and collaborate between global community members, investigators, staff, sponsors (NIH/NIAID/DAIDS) and leadership of the ACTG network. I represented the interests and perspectives of community members viewpoints participating in our clinical trials research, ensuring that their voices were heard and respected on all levels by the network and all study research teams. As GCAB co-chair and Community Scientific Subcommittee member (CSS) I provided guidance and feedback on protocol designs, implementations, and disseminations of clinical trials conducted within the ACTG network and the global communities.
When does your term end? How many terms have you served?
My tenure as community co-chair spanned two terms, each lasting two years. My term began on November 1, 2019, and ended on October 31, 2023.
What were your goals in serving as the GCAB Co-chair?
My primary goal objective was placing the GCAB and the PWH community first. I care about all of us and want nothing but the best quality of life while living with HIV through accessible treatment for all.
I wanted to ensure that community voices and concerns were heard and resulted in tangible actions. I also aimed to increase GCAB members engagement on GCAB community calls. As a community member and leader, I sought to change those Principal Investigators’, site staff, and overall stakeholders perceptions of the ACTG community and highlight our key roles within the network.
What are some of your accomplishments?
I reached out to GCAB members both domestically and internationally during the pandemic lockdown to provide emotional support and encouragement. I also attended individual site CABs meetings via Zoom within the network to stay informed about local developments. Sometimes that meant I would participate in international local site CABs calls as early as 3:00 AM my time, due to the global nature of our network time zones.
One accomplishment I’m particularly proud of was my availability to assist international members with travel issues during and after the ACTG Network Annual Hybrid Meetings in Washington DC. I stayed on call 24/7 to ensure my colleagues made it home safely.
During my tenure as community co-chair, I actually facilitated every GCAB monthly meeting calls as well as all the Ad-hoc calls that TSG’s chairs, and study teams requested without missing a single scheduled call. I also held a leadership role on the ACTG COVID-19 committee and increased the exposure of the ACTG community and what we do to other networks.
I organized and implemented the network’s first ever virtual community World AIDS Day event and prepared our plenary presentations for both virtual and in-person annual meetings. I implemented the network leadership’s annual GCAB message to the community during each January GCAB call. This is where the community gets to hear first-hand, ask questions and share ideas and comments to leadership about the state of the ACTG network and our role as community members within the network. We also learned what will be asked from the community in regard to the network scientific priorities agenda.
Site CABs presentation on GCAB meeting calls, where designated GCAB members would be chosen to report about their respective site CABs updates. I created this task to provide GCAB members with the critical tools and learning experiences for public speaking and to better equip them for community advocacy surrounding HIV clinical research trials.
Another achievement was in September 2023, the GCAB switched to electronic voting for community open elections positions. Moving forward the ACTG community will be using this type of technological approach for all our community voting for faster elections and other community matters.
What are you most proud of?
I’m proud of gaining the trust of the GCAB, NCC staff, and leadership due to my work ethic, integrity, and honesty. I’m proud of leading the network community through changes both within and outside of HIV clinical trials research.
I’m proud of my work on inclusions and exclusion criteria’s, ensuring progress was made to address differing barriers to care and equitable representation for Women, Blacks, Indigenous, and People of Color (BIPOC), trans individuals, and individuals aging with HIV. The creation of the GCAB Young Adult Working Group.
I’m humbled by our network chair Dr. Judith Currier’s invitations to speak on calls to the varies high-level US government health officials about protocol designs for HIV, TB, COVID treatments, and putting People first language forward along with removal of HIV stigmatization language from our vernacular such as being referred to as HIV-infected verses HIV-diagnosed or person living with HIV.
I hope my legacy as GCAB Co-chair will be that of initiating a real discussion about compensation for community volunteers who accept leadership roles on the table for actual discussion to the network leadership, investigators, and stakeholders with real life positive endpoints. The need for this discussion is past due and critical to the survival of clinical trials research across all networks and research disciplines. I stand firmly and unwavering on this issue and my convictions remains resilient and true to this ask.
Some of the community members will say that I ran a tight ship (guilty as charged) however, my style proved to weather the storm. Lastly, I am proud of the Mentorship I provided to a GCAB member for 4-years who is now the new GCAB Co-Chair, Christopher Tunstall, University of North Carolina Chapel Hill, CRS, North Carolina, USA.
Were there any surprises serving in this role?
Most definitely yes, the greatest surprise was Severe Acute Respiratory Syndrome Coronavirus 2 (SARS-CoV-2) COVID-19. There wasn’t a playbook of what to do or how to traverse and lead the ACTG community during the extremely uncertain, and truly unprecedented forbidding event in modern history.
Faced with the tasked of learning how to navigate through the precipitously changing world from developing strategies to managing how to keep continuity while maintaining the cohesiveness of the network community together. I was forced to use new tools and strategies to become the best and most impactful leader that I could be. A tall order for anyone who had recently assumed the community leadership position.
Do you think the role of community within the ACTG has changed over the course of your service?
Most definitely yes, the role of community within the ACTG has vigorously changed because of COVID-19. Clinical trials research forever has been irreparably changed. The community along with the network has been forced to look at clinical trials research and its approaches through a new prism.
Greater participation and accountability from GCAB/CSS members in the overall network process has changed. From protocol designs and development, to actively engaging in the overall process. Members are now held to a higher level of participatory participation and accountability with engagement as GCAB/CSS members. With Analytical treatment interruptions being designed and used in HIV cure-related trials. The community input has never been a more critical component. We need strong community voices and leaders.
What do you hope to see for the future of community within the ACTG?
The community is the lynch pin to HIV clinical research success.
As the HIV epidemic marks 40 + years, the role of multidisciplinary approaches to HIV research has become increasingly important. Development of diverse, cross-cutting research strategies is the key to engaging and retaining community participation in population-based protocols such as HIV cure-related studies. It is also a crucial component of designing studies capable of examining the sensitive and nuanced issues that surround HIV related risk factors and adherence issues and other relevant matters such as Behavioral Sciences being incorporated into all appropriate protocols, aging with HIV, And clear messaging concerning Analytical Treatment Interruption (ATI) just to name a few.
What other messages would you like to communicate as you leave this position?
As I step down from this position, I want to acknowledge that while the field of HIV has seen numerous successes, significant challenges remain. These challenges are evident not only in trial designs, funding, and program implementation but also in individual treatment adherence, behaviors, and the availability of prevention best practices like PrEP and long-term injectables.
Obstacles such as the inability to access hard-to-reach communities for treatments or affordability issues for populations these interventions were designed for translate into real-world issues. These range from participant enrollments to study accruals to recruitment of women and underrepresented populations to community members serving on local site CABs and GCAB/CSS representations.
Despite the availability of lifesaving treatment medications, challenges like these continue to stand in the way of adequate treatment in clinical trials settings as well as public health practices. With new treatment strategies and medication options, we still find ourselves in need of different interventions yet to be found.
I believe it’s time for research investigators to think outside the traditional box. Researchers must be open-minded to new innovative approaches to ending the HIV epidemic and pay greater attention to what the community has to say. We bring knowledge and real-life experiences from living with HIV.
Notwithstanding these challenges, I remain optimistic that we, the community, will rise above them all, as we have done for the past three and a half decades since the ACTG came into existence.
In conclusion, I want to express my gratitude to everyone I’ve had the extraordinary privilege of encountering over these many years as GCAB community co-chair.
Thank you to the network leadership, NCC staff members, especially Allegra Cermak. A special thank you goes out to my colleague and fellow GCAB co-chair and friend Jan Kosmyna. Without her help, I could not have fulfilled my responsibilities as community co-chair.
My heartfelt thanks go out to all my colleagues (GCAB). Because of you all, I am humbled yet have developed beyond who I was when I started this magnificent journey as your leader. I am a better community member advocate and human being because of those encounters.