World AIDS Day: Together, Forward.

Every December 1st, World AIDS Day serves as a time for reflection, honoring those we’ve lost to HIV/AIDS, and recommitting to the work ahead. This year, the Office of National AIDS Policy unveiled the theme “Collective Action: Sustain and Accelerate HIV Progress” on October 4th. However, by November 5th, many of us were questioning how we can sustain and, let alone accelerate, our efforts following the general election and the resulting uncertainty.

For most, World AIDS Day is an annual event. But for some of us, every day is World AIDS Day.

Since my diagnosis in 2016, this day has been deeply personal—a time for introspection. It’s a day to recognize and honor those who came before me, those who fought for better lives for themselves and their communities. I feel immense gratitude for their sacrifices. While this day often presents an opportunity to celebrate our progress, it can be challenging to celebrate when that progress remains unequal. It’s even harder to celebrate knowing the uncertainty that looms after the recent election.

Over the past few weeks, I’ve had extensive conversations with individuals in my community who are grappling with fear and anxiety about the unknown. This fear is valid. Concerns about access to gender-affirming care, uphill challenges in the public health sector, and worries for immigrants are all real. The incoming Administration has already indicated plans to target marginalized communities, dismantle essential programs and departments, and undermine critical initiatives. While campaign promises often fall short, they can sow seeds of doubt and concern about what lies ahead.

Just days after the election, I attended a meeting of the U.S. People Living with HIV Caucus. These meetings are among my favorites, always inspiring, and filled with legends of advocacy—many of whom have been at the forefront of this fight since the early days of the AIDS crisis. 

Space was allocated for meeting attendees to express their emotions regarding the election and the future. Many expressed sadness and distress about the outcome. I’m often quiet in these meetings, I feel like a small child in a room full of grown-ups. After listening to others’ perspectives, I decided to raise my hand. I spoke about my concerns for LGBTQ+ youth and the communities disproportionately affected by HIV. Despite my concerns, I expressed a sense of resolve.

Following the 2016 election, I, like many others, felt lost, and angry. Struggling to find purpose, I reached out to the local LGBTQ+ center to volunteer. I discovered that building community, learning to love, and leaning on one another provided hope amidst uncertainty.

Much has transpired in the eight years since then. Many of us who engaged during that time have continued to advocate for various issues. I’ve reminded myself and others that while we may face unknown and challenging days ahead, we have consistently fought for a better world regardless of who is in power. This has equipped us with two crucial tools for navigating an uncertain future: experience and community.

Throughout history, communities have come together to counteract the harms inflicted by those in power. Including the Gay Liberation Front, ACTUP, and the civil rights movement. Those who are knowledgeable about our collective history are better prepared to prevent it from repeating or at least minimize the damage. The knowledge of our rich history of transforming the tide gives me the most significant asset in this moment: hope.

Back in November, I posed a question: are we ready to answer the call of this moment? I don’t believe that question is any less relevant today. We never knew what that call would entail, yet here we are. This year, on World AIDS Day, and likely every day for the next four years, I hold onto the words my friend Jen Laws shared with us shortly after the election: “We are not called to this work because it is easy; we are called to this work because it is necessary.”

While we face an uncertain path ahead, we have the blueprints from our history, and the support of our communities to guide us. We must approach each day, one at a time, while clinging to hope with unwavering determination. Not because things will be easy, but because it is our inherent calling to look forward, to work collectively to not only sustain but also to shape the future of our country, and the world. It would be an ultimate disgrace to let our friends, family, and elders succumb to a plague, and for us to abandon our mission at this moment.

‘Remembering and Committing’ to Representation in Advocacy Leadership for World AIDS Day

This year, World AIDS Day celebrates its 35th anniversary under the banner of “Remember and Commit”. As someone who was born in the mid 1980s, I do not have the experience of remembering a world before HIV, though I did have the privilege of being deeply influenced by fierce HIV activists and People Living With HIV (PLWH) from the time I was very young. My first memories of HIV involve my beloved Auntie Michelle, who was an HIV program monitor from the late 80s through the 2010s. In crumbling pastels, she covered her entire driveway in sidewalk chalk to help explain her work and how systems of HIV care interacted on local and national levels. My eleven-year-old brain was fascinated as she illustrated how the strongest programs placed people who had lived experience at the center of leadership and program development… and also what happened when the voices of those people were ignored.

I don’t have memories of what the world was like before HIV, but I remember my Auntie and her best gay friends (who were the first gay adults I had ever met) walking my pre-teen self down Belmont Avenue in Chicago, sharing memories of where they had partied before the parties became eclipsed by the HIV epidemic. Nestled among those very venues, they also made a point to show me one of the first youth drop-in centers to offer HIV testing, counselling, and support groups in Chicago. They shared about how they had been involved in evolving similar programs to expand access to HIV care in hospitals and neighborhood health clinics throughout Cook County – always championing the ways that PLWH were steering the vision of what those services should look like.

As a young “sick kid” who was already too familiar with the power dynamics of not being heard in medical settings, I remember being in awe that impacted people could ever have power over how their healthcare was delivered, let alone be in positions of leadership to direct how it could be done. In being generous with their memories of a world before HIV, and of what they had helped to build after it, they fostered my sense of legacy in advocacy, and helped shape my dreams of what we might have the power to collectively build in the future.

With this kind of role-modeling, it is perhaps unsurprising that I would find myself both enamored and enraged in the world of healthcare advocacy and policy development as an adult. While it still feels like the field of HIV is more intentional than others in incorporating people with lived experience into leadership roles, there is still plenty of room to more meaningfully center PLWH in our advocacy movements and beyond. And one area we still frequently lag in is ensuring our representation and leadership evolves with the epidemic. Far too many boards and chief executives reflect a heavy white, cis, male experience. Far too often, if leadership has any reflection of diversity among PLWH, it’s very tokenizing. This is especially true for women and trans people.

On a smaller scale, it is now broadly expected (and sometimes legally required) for clinics and programs to house community advisory boards to help guide their practices. Unfortunately, it is less common for those boards to be adequately representative of the communities they serve, and even less common for those boards to have meaningful power in decision making or policy setting within their spheres.  What does accountability look like in our collective commitment to centering the voices of PLWH in our advocacy movements? In my experience, it is much easier for people who are not living with HIV to wax poetic about what that can look like, while refusing to cede, shift, or share power in meaningful ways.

From conversations with loved ones, colleagues, and elders who were engaged in early HIV activism, I am reminded that the PLWH at the forefront of the movement were not there because they had been “allowed” to be by people who were not living with HIV, but because they demanded that their voices be heard in all of the spaces in which their lives were discussed. The urgency that motivated their call to action may not look the same now as it did 35 years ago, but the commitment that they demanded from those in power remains the same.

On this World AIDS Day, may we all remember the voices, lives, and sacrifices that PLWH the world over have made to ensure that their voices are the ones propelling our movement. May we remember our commitment to not only hire, but to invest in PLWH and communities highly affected by HIV. May this stream of memory renew our commitments to empowering both new and seasoned leaders who are living with HIV to build a world where everyone can thrive, regardless of their status - and may we remember our individual power to advocate in our own back yards and reflect on how we can hold ourselves accountable to that charge as we move forward in this epidemic together.