Forty Years of Fighting for Equitable Partnering in HIV Research: We Are Not There Yet

I call them my Rosa Parks moments. Parks made the following comment in a KPFA radio interview recorded in April 1956, referring to the day in 1955 when she refused to give up her seat on the bus:

The time had just come when I had been pushed as far as I could stand to be pushed, I suppose. I had decided that I would have to know, once and for all, what rights I had as a human being and a citizen.¹

I am reminded by her example that advocacy often begins with a simple act that can lead to monumental change and be of historical significance. I have seen how, in the past 40 years of the HIV epidemic, advocacy and action have motivated necessary changes that have forged more meaningful and equitable partnerships between community members and HIV researchers. I also see more clearly what remains to be done to ensure that equitable partnering is not only maintained but strengthened moving forward.

I am a Black woman approaching my 70th year, 35 of which include HIV. Here I want to reflect on how advocacy has shown up throughout that time. I am grateful to lend my story to others in this 40-year retrospective, humbled by the fact that I have witnessed firsthand most of this very special history.

As a person with HIV, I am wholly committed to, if not obsessed with, ensuring that the rights of people with HIV are embedded from the start to the finish of the entire HIV research process. We, people with HIV, are the ones most affected and therefore our lives and lived experiences should be the focus and the lens through which researchers look. Two parts of the Denver Principles of 1983² stand out for me:

For people living with HIV: Be involved at every level of decision-making.

Be included in all AIDS forums with equal credibility as other participants, to share their own experiences and knowledge.

In addition to the Denver Principles, two other sets of frameworks were developed to guide community engagement in research as well as meaningful and effective researcher–community partnerships. Those frameworks are the GIPA/MIPA Principles of 1994 (Greater and Meaningful Involvement of People with AIDS) and AVAC’s Good Participatory Practices.

THE INTEGRAL ROLE OF COMMUNITY

After living in extreme fear and secrecy during the first 10 years after my diagnosis, I joined a community of people with HIV and learned that the clinical trials and research in which we were involved should respect our right to always be a full partner. The principal investigator for the Georgetown AIDS Clinical Trials Groups (ACTG) approached me to ask if I would help revive ACTG’s Community Advisory Board. I did not claim to know or understand the science, but I did know what it felt like to be respected, to exercise my rights to be an active partner in my care, and to maintain control over an illness whose grip seemed so strong while choices and options for healing seemed elusive.

Finding ways to give to something bigger than yourself can help to make you feel whole and hope filled. The Community Advisory Board allowed me to join a global community of amazing and inspiring people whose own lives of activism, advocacy, and action inspired and informed me. I continued what I began to learn years before HIV: to advocate for myself with my physicians and other caregivers. I was buoyed by and honored the lessons from the early HIV/AIDS activists and those who used their own personal stories to create organizations for the care and support of others.

As part of the ACTG Global Community Advisory Board, I have witnessed and been a participant in community leadership and advocacy throughout the structure of this large and critically important National Institutes of Health research network. Thanks to the early activists, community advisory boards are now required at ACTG research sites. Global community leaders involved in treatment research have assumed critical roles in ACTG with respect to determining research priorities, developing and reviewing protocols, ensuring ethics in research, and ensuring representation of communities underrepresented in research. Community advisory board members now share the stage with world-class researchers demonstrating their own equally groundbreaking knowledge fortified by their own experiences. As a result of ongoing advocacy, the number of women in HIV research has grown but still begs more attention.

WHERE THERE’S ADVOCACY (AND A WILL), THERE’S A WAY

I attribute my own growth in advocacy largely to those individual and organizational advocates and activists who continue to be leading voices promoting change to support families and communities still disproportionately affected by HIV, economic and health disparities, and racial injustice. Those voices must be heard and incorporated throughout the research process to build buy-in and trust and increase the likelihood of consequential results. I began working with the District of Columbia Center for AIDS Research (CFAR) 12 years ago, the first 10 as a volunteer chair of the Community Advisory Board (now the Community Partnership Council). Now a part-time CFAR employee, I facilitate and provide a community perspective throughout the organization. Having a community person on the staff demonstrates the value of community input. I am now able to interact and collaborate with researchers regularly.

I take seriously my responsibility to be a voice and conscience for the different communities represented on the Community Partnership Council and other community partners. The tireless work of community stakeholders on the ground helps to inform research. They fight for the resources required to increase and enhance HIV prevention and treatment services. In response to community concerns, CFAR recently launched an academic–community partnership award program in which pilot research is led equally by a joint team of academic and community principal investigators. Community members co-lead scientific interest and working groups in areas of high priority to them and participate fully in planning and strategizing meetings with Executive Committee members, many of whom are also leading researchers.

Furthermore, the Community Partnership Council is involved in the development of the next generation of researchers through our role in reviewing pilot award applications. We now have a compensation plan that partially recognizes the professional contributions that members make. The CFAR environment is collegial and respectful and honors distinct identities. I am proud to be one of the leaders not only initiating necessary changes but also working to make sure that there are structures and processes in place to sustain them.

MORE HARD WORK REMAINS TO ACHIEVE A FULL PARTNERSHIP

Much progress has been made that benefits us all. Nonetheless, despite a long history of demanding and ensuring community involvement in HIV research, further action is needed. People with HIV, long-term survivors, women, LGBTQ (lesbian, gay, bisexual, transgender, and queer or questioning) individuals, people of trans experience, Latinx individuals, the faith community, Black heterosexual men, younger people, and others have many more important questions to be answered through research. Moreover, they are closest to some of the best solutions. As Paul Kawata, executive director of NMAC, notes: “It’s time to build real solutions that aren’t window dressing and come from the communities we need to reach.”³

Some of what remains to be done is difficult because it requires structural change and cultural shifts. Actions needed include, but are not limited to, the following:

• •Continue to build community trust, something compromised by decades of unethical practices and unfair and intersectionally discriminatory practices and treatment
• •Use lay language to translate and disseminate research findings and avoid stigmatizing, devaluing, and diminishing language
• •Build research capacity within communities (e.g., programs to increase research and data literacy)
• •Facilitate the ability of academic researchers to partner with communities without professional risk (e.g., tenure and promotion concerns)
• •Be intentionally inclusive: ask who is not in the room and then take steps to involve such individuals
• •Hire people from the communities hardest hit by HIV to assist with all aspects of the research process
• •Recognize and change the power dynamic by ensuring equal access to information, resources, compensation, and recognition
• •Find innovative ways to routinely disseminate research processes and findings
• •Recognize that old paradigms, narratives, and organizational cultures and practices are barriers to true academic–community partnerships and require constant vigilance and change

I am grateful to have lived many more years than I expected. Alas, aging with HIV has ushered in substantial challenges for long-term survivors and requires continued and forceful advocacy. My concerns, and those of my aging cohort, have now turned to the comorbidities that emerge sooner than in those who are HIV negative. These comorbidities in turn increase vulnerability to COVID-19, which I have experienced firsthand. I am even more committed to wellness and dignified aging for people with HIV, and I am also committed to increasing attention to this important topic. May the example of Rosa Parks continue to inspire us to achieve equity in partnering in HIV research.