Where Is the Vision for HIV Community Leadership in Tumultuous Times?

Andrew Spieldenner, Ph.D.
Andrew Spieldenner, Ph.D.
Lina Cherfas

We are in tumultuous times. Just a few years ago, President Obama and Secretary of State Clinton were talking the "end of AIDS" and a few governors even advanced plans to address that lofty goal. Today, we wonder whether at the end of this year we still will have access to the health care we need as people living with HIV. Our representative organizations are largely silent, tense, waiting to see what will happen.

For decades, non-profit organizations were a loud voice in politics and advocacy. At the start, government agencies were slow to recognize HIV and even slower to respond. Community groups were the central service providers and advocates in the HIV epidemic. We invested our lives in these groups, trusting them to speak for us. We felt integral to these community organizations.

The world of HIV non-profits has changed dramatically in the past 10-15 years. Many of the small, focused and LGBT-people of color groups have closed. The reliance on governmental funds led shifting political concerns to influence public health funds away from small non-profits and towards medical providers. Other HIV organizations have become clinics or merged with a larger clinic. Lastly, more and more HIV organizations no longer have HIV in their name or mission statement.

I do not blame these organizations for their survival choices. I am acknowledging a field in flux. Advances in science and knowledge have transformed the ways that governmental organizations and service providers envision HIV prevention and care. There are more tools available, including better treatments, leading to more emphasis on clinical interventions. While these clinical interventions are promising and exciting, they fail to address the context of our lives -- such as trauma, lack of support, the need for work and housing, the ways that we manage our hurt, mental health challenges and sexual and reproductive health, just to name a few.

Today, I am waiting to see exciting new leadership emerge in the remaining HIV field. I am part of a generation of HIV activists who have left the professional part of the field. At HIV non-profits, I was employed in a variety of positions: management, evaluation, fundraising and policy analysis. I now work as a professor at a university. I still engage in HIV advocacy and community building as part of the largely volunteer group, the United States People Living With HIV Caucus. I am a gay man of color openly living with HIV, and I no longer see a place for my kind of leadership in HIV agencies.

The Precarious Position We Are In

I still see HIV organizations that do not have any mechanism or system through which people living with HIV can provide meaningful feedback.

Many agencies bring their community advisory boards together regularly for dinner and a good time, not to deeply understand the direction of the agency. Criticism is heard as disloyalty, and often people living with HIV are fearful of our tiny place at the table being taken away or our services being impacted. While I hear service providers scoff at this, I wonder why they can't recognize the precarious position we are in.

Other times, the leaders are themselves living with HIV and cannot see how their executive position makes them different from other people living with HIV, as if only one of us could represent the million people in the United States living with HIV. Finally, I have met with HIV agencies that do not know whether they have employees living with HIV. While I believe this is due to organizations behaving so stigmatizing that people do not feel comfortable being out about their status, the leaders there say they do not want to embarrass people by asking.

Hard Lessons in Leadership

Times have changed, and we are entering new territory. Viral suppression, HIV pre-exposure prophylaxis (PrEP), non-occupational post-exposure prophylaxis (PEP) and a cure for hepatitis C are all exciting technologies that transform the approach to HIV prevention and care. The emphasis on social justice and intersectionality has become stronger in some areas of the HIV field, but it has only trickled into most mainstay HIV organizations. Leaders do not feel obligated to learn and speak in the language of today.

Where is the vision for leadership in the HIV community? People who have been doing amazing work for decades who are verging on retirement. Some of my generation have gone to work for big pharma and will not be back. Others have moved into different areas of social justice, education, government and non-profits. Many of us deal with mental health and disability issues, as well as instability in our employment, substance use, relationships and homes. Whenever an executive job opens, I look at my peers to see who applies. And they look at me.

What is the challenge in cultivating leadership? Is it a fear of sharing power? Is it the reality that the language and ideas surrounding people living with HIV have dramatically evolved in the last twenty years? Is it an unquestioning belief in one's own relevance? Because organizations can set up systems that allow for new voices, that provide for constituent feedback, that allow leaders to grow into positions. Other fields do this, actively -- but not HIV.

As the chair of the United States People Living With HIV Caucus, I have encountered some hard lessons in leadership. Group processes work; they are uncomfortable, take time and can take on multiple shapes, but they do work. Transparency is important; people are more likely to believe in you if you make an effort to show them the decision-making process. People come from different experiences and traumas, and people-first language demonstrates that we are on the same side. People-first language does not come naturally to me, but it keeps people involved. Constituents matter.

I wish more HIV organizations shared this experience. I know it's difficult to manage these relations and processes -- trust me, I know -- but they are vital to moving forward in the HIV epidemic. People living with HIV are not widgets for your clinic to grow. We are integral to your success.

Andrew Spieldenner, Ph.D., is assistant professor of Rhetoric at Hofstra University, chair of United States People Living With HIV Caucus and research director of the United States implementation of the HIV Stigma Index.