Additional authors include Richard Jefferys, and Mark Harrington.
Treatment Action Group (TAG), founded in 1992, is an independent, activist, and community-based research and policy think tank comprised of a team of science-based activists working to expand and accelerate vital research and effective community engagement for an end to the HIV, tuberculosis (TB), and hepatitis C (HCV) pandemics. As a now 30-year old organization that was borne of the activist ACT-UP movement that galvanized around activism for access to testing and treatments for HIV, TAG has since expanded its advocacy focus to TB, HCV, COVID-19 and emerging outbreaks (e.g., monkeypox virus), while recognizing that achieving an end to these pandemics hinges on a commitment to racial, gender, and LGBTQ+ equity; social justice; and liberation. TAG catalyzes open collective action by affected communities, scientists, and policymakers to ensure that all affected communities — especially communities of color and other marginalized communities — receive life-saving prevention, diagnosis, treatment, care, and information. We envision achieving an end to pandemics through discovery, development, and worldwide dissemination of safe and effective diagnostics, preventives, vaccines and cures, and through public health structures that end systemic harms, promote human rights, and are developed by the diverse communities most affected by these conditions. We believe this vision will be realized based on data and science, and achieved through community engagement, distributive justice, and equitable access to the benefits of science.
TAG has extensive experience in developing educational resources for community advocates. Our current Community Engagement program funded by HVTN and CoVPN is led by Abraham Johnson, HIV Community Engagement Project Manager, and Riko Boone, HIV Project Director, with strategic and logistical support provided by Richard Jefferys, Basic Science, Vaccine and Cure Project Director and Mark Harrington, TAG’s Co-founder and Executive Director. Notably, TAG’s advocacy efforts and community engagement around HIV vaccine development can be traced back to our founding in 1992. In 2000 we published a report entitled, NIH-Funded AIDS Vaccine Research - A Critical Review, authored by Gregg Gonsalves, TAG’s then Policy Director. The report stated TAG’s belief “that a vaccine is most likely to emerge from a creative and rigorous synthesis of basic research in human and non-human primate immunology and in HIV virology, with animal and clinical studies of vaccine candidates, delivery routes, adjuvants, and the like. We hope that by examining the scientific issues faced in basic, animal, and clinical HIV vaccine research, we can contribute to overcoming the obstacles and thus contribute to a revitalized, accelerated, intensified effort.” From its inception, TAG has covered vaccine development (for HIV, TB, and HCV) in over 210 publications.
In 2017 TAG published a report with support from AIDSFonds (Netherlands) on the integration of pre-exposure prophylaxis (PrEP) in HIV prevention and vaccine trials, entitled HIV Research in the Era of PrEP: The Implications of TDF/FTC for Biomedical Prevention Trials. This report provided overviews of the HVTN 505 and HVTN 702 trials, described plans to offer PrEP medication and PrEP information in the HVTN 704/HPTN 085 and HVTN 703/HPTN 081 “AMP Studies”; and highlighted results from a TAG-developed survey assessing community attitudes regarding PrEP provision in biomedical prevention clinical trials based on a questionnaire completed by HIV prevention research community advocates. The online questionnaire, launched between March 7 - March 20, 2017, was drafted by TAG staff, finalized with feedback provided by five biomedical prevention advocacy partners, and heavily promoted via HIV prevention and advocacy listservs and social media. Also in 2017, TAG launched four educational modules on HIV prevention policy and research advocacy, including resources that formed the basis of dozens of TAG-led community trainings held across the southern U.S.
Beginning in 2005 as part of our ongoing monitoring and dissemination of information about advances in the HIV vaccine research pipeline, and made possible since 2020 in part due to the generous support of the HIV Vaccine Trials Network, TAG releases facts sheets and yearly updates to its HIV Vaccine and Passive Immunization Pipeline Report. These reports have been very useful resources over the years for advocates to stay up to date on current developments, questions, and emerging issues in HIV vaccine research. Coupled with webinars produced by TAG in collaboration with partners at the HVTN, the Black AIDS Institute, and Southern AIDS Coalition, and featuring community advocates, researchers and stakeholders, the Pipeline reports have been cornerstones of our efforts to motivate and educate communities about the vital role of HIV vaccines. Over the years with the support of HVTN, TAG has produced and collaborated on webinars celebrating successes and innovations in biomedical HIV prevention and future opportunities that will stem both from those prior advances as well as from innovations that are currently in the research pipeline; describing how lessons learned from the HIV epidemic can inform efforts to address the COVID-19 pandemic through a racial equity lens; raising awareness of the impacts of post-acute sequelae of SARS-CoV-2 infection (i.e., “PASC” or “Long COVID”) on people living with HIV; and highlighting the roles of analytical treatment interruptions and broadly neutralizing antibodies in HIV vaccine, cure and prevention research (e.g., the HVTN 804/HPTN 095 and HVTN 805/HPTN 093 “AMP ATI” Studies). Notably, in response to the announcement of results from the Imbokodo HIV vaccine trial (HVTN 705), TAG’s Basic Science, Vaccines, and Cure (BSVC) Project Director, Richard Jefferys, wrote a comprehensive article about the lack of protective efficacy observed and implications for the future of HIV vaccine research. Together with a previously published 2008 commentary in defense of the HVTN, TAG conveyed the critical message that perceived ‘failures’ of HIV vaccine efforts should not necessarily be viewed as crises for HIV research.
TAG’s closer partnership with the HVTN grew further in 2018 after the HVTN’s one-day Next Generation of HIV Prevention Efficacy Trials meeting – a relationship that has continued to flourish through powerful collaboration with Black AIDS Institute and Southern AIDS Coalition. More examples of this partnership include the creation of the We The People Research Certificate Program, which has equipped HIV prevention research advocates to engage in discussions about the future of HIV trial design, and provided them with access to a network of both global and domestic HIV advocates; a March 2020 white paper entitled, The Future of Biomedical HIV Prevention Trials: Researcher Viewpoints and Community Survey; and an April 2022 workshop during the NMAC Biomedical HIV Prevention Summit entitled, “The Power of Togetherness: Building Future HIV Advocates.” Mark Harrington shared his insights on the history and current landscape of HIV vaccine development during the May 2022 HVTN Full Group Meeting in Washington, DC, for a discussion session titled, “What’s the end game? Specifically, how do we bring it all together to make an effective neutralizing vaccine?”
As has been the case for all HIV prevention, vaccine, treatment and cure research stakeholders, in 2020 TAG was forced to pivot our programming to adjust to the realities of the COVID-19 pandemic, while simultaneously beginning to produce community engagement programming focused on the impacts of the pandemic on key populations and HIV research, and educating communities about scientific developments and subsequent dissemination of COVID-19 vaccines. Our advocacy shifted to include efforts such as releasing a joint statement criticizing the proposed use of human challenge studies in COVID-19 vaccine development, and collaborating with advocacy partners to reverse the initial exclusion of people with HIV from phase III COVID-19 vaccine efficacy trials. We were also grateful to collaborate around establishing the COVID-19 Working Group NY, which released COVID-19 and Impacted Communities: A Media Communications Guide, outlining best practices for how members of the media and press should effectively communicate COVID-19 related information. In addition to calling public officials to task over their handling of the pandemic and calling for the declaration of a public health emergency, TAG also petitioned for increased commitments by the public health field to addressing the atrocities of structural racism and over-policing practices in the US during the early period of the pandemic.
Our COVID-19 related community engagement programming has included webinars highlighting lessons learned from COVID-19 protocols, policies implemented by HBCUs, and student perspectives to help inform responses to future pandemics or public health emergencies; a May 2021 report entitled, Breaking Barriers: Surveying Community Perspectives of COVID-19 Vaccine Research; and a September 2022 webinar focused on the current landscape and future directions for addressing the COVID-19 and monkeypox pandemics. Promoting the critical role that equitable access to vaccines generally plays in resolving health disparities, TAG is committed to advocating and engaging communities around issues related to vaccines and other preventive tools and treatments for TB, viral hepatitis, COVID-19, and monkeypox. We hope one day to include durable and universally available vaccines and cures for HIV.
TAG deeply understands the unique role that research advocacy organizations play in the path to find an HIV vaccine. Our programming and advocacy reflects the needs of community and stakeholders domestically and globally. and we recognize that without inclusiveness and intentional community engagement from the inception of a clinical trial, an HIV vaccine may fail to reach populations who most need it. To that end, we will continue to advance innovative approaches to meaningful community engagement to ensure that our advocacy efforts leave no voice unheard, while relentlessly fighting for unencumbered, equitable access to HIV vaccine trials and other biomedical interventions.