Community is not separate from expertise—it’s one type of expertise
.FIRST PERSON.
What began as questions about the application process for submitting a workshop proposal to NMAC for the U.S. Conference on HIV/AIDS (USCHA) and who belongs became a conversation with NMAC leadership that led to immediate changes that reaffirm that lived experience belongs throughout USCHA.
Change often begins when people are willing to use their voices to question a process they care about. Our experiences with USCHA were different, but they raised connected concerns about access, participation and how community members see themselves within the opportunities being offered. What began with two individual experiences became a larger conversation with NMAC leadership about what can happen when community members share their experiences, ask difficult questions and are met by people willing to listen, respond and improve the process.
We are Bee Velasquez and LaDawn Tate, recent participants in the Comms Baddies Fellowship at Positive Women's Network–USA (PWN–USA). During the fellowship, LaDawn’s experience submitting a workshop proposal and Bee’s lived experience perspective brought us together in a conversation about representation.
Participation begins even before someone first walks through the doors of a conference. For many of us, the journey begins months earlier. It starts with scholarship applications, abstract submissions, volunteer opportunities, travel planning, finding financial support, navigating accessibility needs and figuring out if attending is even possible. It was during this process that we encountered a barrier we had not expected.
As part of the submission process, applicants are asked to list their credentials. The examples of listed credentials below that question included Master of Science (MS), Master of Social Work (MSW), Doctor of Medicine (MD), Master of Public Health (MPH), and Doctor of Philosophy (PhD), but not SME—Subject Matter Expert. Later, applicants are asked to identify where they work, with a drop-down menu listing medical institutions and universities but not advocacy organizations or spaces that primarily focus on the nonmedical needs of people living with HIV. Instead, one option simply read, "I am not currently working."
Skipping the questions about an applicant’s degree or place of employment was not an option for anyone wanting to submit. To many of our peers at PWN, this meant they were not welcome to apply. The perception was that USCHA cared more about credentialed medical professionals than about people living with HIV, whose expertise comes from lived experience. Rather than leave our concerns unanswered, we reached out to Harold Phillips, CEO of NMAC, to ask where he stood on these issues and what changes were being considered to ensure that everyone with lived experience felt welcome to participate in future conference opportunities.
Phillips responded immediately, apologizing that this had taken place. He agreed to speak with us for an interview about how USCHA is changing its conference application process to ensure that everyone with lived experience can apply for conference opportunities. USCHA’s chief medical officer, Leandro Mena, MD, and director of programs Melissa Rodrigo joined the call as well.
Phillips opened the conversation, saying that “there has always been emphasis on ensuring that the community had a platform for presentations, and that the community had an opportunity to not only lead but demonstrate the work that they were doing.” He added that USCHA asks for credentials, in part, to ensure that medical professionals seeking continuing education credits can receive them. While credits are important, Phillips acknowledged that the purpose behind those questions should be communicated more clearly so that no one feels excluded by the application process.
Mena shared that he acted immediately after receiving our email. “I didn’t wait until the next USCHA in case we forgot,” he said, “I actually had someone change it right away so that ‘no degree’ is the first option.” He also explained that USCHA asks where applicants work because continuing education credits are available only to professionals employed in certain settings. For example, someone with a PhD who is not professionally active in the field wouldn't qualify for those credits, regardless of their degree.
Both Phillips and Mena agreed that these questions should not leave community members feeling unwelcome. They committed to reviewing the organizational affiliation section to ensure it does not unintentionally exclude advocacy organizations, volunteers and community members whose work does not fit traditional institutional categories or qualify for continuing education credits.
The conversation extended beyond the application itself. We also discussed volunteers receiving information too late to make affordable travel arrangements and the mobility and accessibility challenges experienced by many aging people living with HIV. Phillips acknowledged those concerns and shared that accessibility has become an important consideration as USCHA plans future conferences. He described recognizing firsthand that conference spaces must better accommodate attendees using walkers, scooters and other mobility devices, and committed to considering those needs in future venue planning. Leadership also committed to working with local host committees so volunteers receive information earlier, allowing them more time to plan for travel and other conference expenses.
Perhaps the most powerful outcome of our conversation was not a change to an application form or a commitment to improve conference logistics. It was NMAC’s reaffirmation of who USCHA is meant to serve.
“We are here for community,” Phillips said. He said that physicians and community members are all on the same team of caring for people living with HIV. But when it comes to expertise, “nobody understands more than people living with HIV.”
These words reinforced a truth that has always been at the heart of the HIV movement: the people most impacted by HIV are not simply participants in the conversation—they are essential leaders of it. That commitment was further strengthened when Mena emphasized that NMAC will continue listening to the community and asking community voices to help guide the conference's future.
This was more than a promise to improve a process; it was a commitment to partnership. It recognizes that people living with HIV are not just attendees, volunteers or presenters. We are subject matter experts whose lived experience informs research, shapes policy, strengthens clinical practice and drives meaningful change. When community voices are welcomed, valued and acted upon, the entire HIV movement becomes stronger, more inclusive and better equipped to meet the needs of those it exists to serve.
This experience reminded us that meaningful change does not always begin with a policy revision or a new initiative. Sometimes, it begins with a conversation. It begins when community members feel empowered to speak honestly and candidly about their experiences, and when leaders are willing to listen with openness rather than defensiveness.
As Phillips noted near the end of our conversation, “NMAC exists because the late great Craig Harris stood up at an APHA (American Public Health Association) conference 40 years ago where a panel of all white people was speaking about HIV. There were no people of color or women on that panel. Craig was outraged and screamed at APHA about how dare you have a meeting and not include Black and Latino voices and women. NMAC was one of the organizations that came out of that. So, we're not going to have that again. We’re going to make sure that those voices are represented at these meetings.”
That has been part of who we are in the past and who we will continue to be, which is why I’m taking your suggestions and feedback really seriously about how we make those changes so that we can continue to be that organization.
Community is not separate from expertise. Community is one type of expertise. When we make space for every voice, we build a stronger movement for us all.
LaDawn Tate is the leadership development and training manager at Positive Women's Network–USA (PWN–USA) in Detroit, Michigan. She has more than a decade of experience in HIV advocacy, peer support, housing stabilization and community leadership. She has served in leadership roles across local HIV organizations and is a nationally recognized advocate committed to advancing health equity, meaningful involvement of people living with HIV (MIPA), and person-centered systems change through policy, training and lived experience.
Bee Velasquez has lived with HIV since 1996, turning lived experience into advocacy, leadership and action. She serves as Oregon state lead for Positive Women's Network–USA (PWN–USA) and co-chair of Oregon's End HIV/STI State Planning Group, helping ensure community perspectives shape policy and care. Her experience as a certified nursing assistant, administrative medical assistant, peer support specialist and program facilitator has shaped her approach to advocacy, leadership and systems change. She brings this approach to every role, asking difficult questions, speaking up when systems fail and advocating for meaningful involvement.