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    Revitalizing Efforts to Bring an End to the HIV/AIDS Epidemic

    By John Cunningham

    One of my closest friends, Joe, was a bright light for all who knew him. He warmed their lives and impacted mine in a way few others have. Just last month, he passed away from AIDS related complications. Not in October 1983. Not in October 1993. October 2023.

    When I utter the words “cryptococcal meningitis,” a fungal infection that Joe’s weakened immune system allowed to run rampant throughout his brain, I see a shake and shudder within the core of those I’m speaking to. It takes us back to a hauntingly familiar time when there was no hope for our loved ones who perished from this and other opportunistic infections. It was a time when there was no treatment. When stigma and discrimination hindered any effective treatment from being developed at an urgent pace.

    These casualties were gay, transgender, persons of color, and other marginalized lives; lives considered less important and/or demonized and hated. And so there was, tragically, no urgency.

    John Cunningham, Chief Executive Officer of the National AIDS Memorial

    Today, there is hope for those living with HIV and AIDS because of medical advances and treatments developed over the years. The challenges Joe confronted were not only those caused by the HIV virus but also those resulting from a dysfunctional healthcare system that failed to value and protect him as it does so many in our society. It is no secret that we live and die within a healthcare system that does not treat everyone equally. It does not avail equal access to all who need it.

    While AIDS is no longer at the forefront of the public’s attention, it is still destroying lives, particularly in marginalized communities where, predictably, lives are often shamefully undervalued and underserved. The common substandard healthcare in these communities is causing unconscionable physical harm, but also psychological and emotional harm stemming from the stigma associated with it. It is challenging to realize one’s true self-worth when society sends a contrary message. This consistent messaging damages one’s self-esteem.

    The AIDS Memorial Quilt is considered the largest community arts project in the world. It was conceived by activist Cleve Jones as a way to honor those lost to AIDS—and also as a weapon to bring attention to the disease that the Reagan administration and much of society had mostly chosen to ignore. It features more than 50,000 panels stitched together by friends and loved ones to honor the stories of those who succumbed to AIDS.

    Within the threads of these beautifully crafted panels, there are now more than 110,000 names, mementos, and stories sewn into the Quilt. And while we are honored that people are compelled, to this day, to memorialize lost loved ones by sending new panels to add to the Quilt, it is gut-wrenching to see new names and stories appear on this growing memorial.

    Heading into World AIDS Day 2023, we must revitalize our efforts to bring an end to an epidemic that has raged on since The Cold War.

    In 2023, the National AIDS Memorial traveled to vulnerable communities in Texas, Tennessee, Louisiana, Georgia, Alabama, and Mississippi for our “Change the Pattern” initiative. In partnership with Gilead Sciences and the Southern AIDS Coalition, we brought the Quilt to these communities to tell the stories of Black and Latinx lives lost to AIDS, to raise awareness about the ongoing destruction AIDS is causing, and to gather with these local communities for Quilt panel making workshops. This effort resulted in the creation of nearly 300 new Quilt panels representing lives from communities of color taken far too soon.

    The AIDS Memorial Quilt on display in Washington, D.C., 2012
    Credit: Elvert Barnes Photography

    Communities of color have always been disproportionately impacted and under-represented in the story of the AIDS epidemic. The National AIDS Memorial is committed to ensuring that we accurately represent and honor those lives, and in doing so, bring about change in those communities. Being in the communities most impacted by the epidemic today and hearing the stories of those it continues to impact, our drive to make a difference is reignited.

    As a society, we must redouble efforts around healthcare access: full access, no matter what color a person is, their sexual orientation, or how they self-identify. We all possess the right to our own bodily autonomy, and that autonomy should not adversely impact the way anybody is treated.

    Bodily autonomy is the fundamental principle that individuals have the inherent right to make decisions about their own bodies and physical integrity without external interference or coercion. The topic of bodily autonomy will be a key conversation in our 2023 World AIDS Day National Observance. Our annual December 1st observance brings leaders together from across the country for a national conversation. This year’s theme, “Powerful Conversations,” will shine a light on the ongoing struggle to end the epidemic, progress made, and hope for the future.

    The moderator for our conversation on bodily autonomy, Imani Rupert-Gordon, Executive Director of the National Center for Lesbian Rights, will foster a conversation that delves into the complexities of bodily autonomy, its intersections with various aspects of life, and the pressing issues and challenges surrounding this essential concept.

    One of our panelists, Lashanda Salinas, has suffered immense injustices from a legal system in which bodily autonomy is not respected. Lashanda was first diagnosed with HIV at age 16. In 2006, she was unjustly imprisoned, charged with a crime for living with HIV, and forced to register as a sex offender. Today, Lashanda is creating change by standing up for those facing similar injustices. Lashanda will share her incredible story with us at our World AIDS Day conversation on bodily autonomy.

    Lashanda will also be honored with the 2023 Inspiration and Hope award at our November 30th Light in the Grove celebration. Voted the Bay Area’s best LGBTQ+ fundraiser for the 3rd time this year, Light in the Grove is a magical celebration of Reunion, Remembrance, and Renewal, with all proceeds going toward scholarships and programs that strive to protect future communities from fear, silence, discrimination, and stigma. The event features gourmet hors d’oeuvres, champagne, and brief reflections from guest speakers. During a time in which negativity clouds our society, it offers the AIDS community a space to reconnect and celebrate life in the National AIDS Memorial Grove. As Harvey Milk so eloquently said, “We must give them hope,” and today, out of the AIDS crisis, we share hope for a brighter future.

    The National AIDS Memorial Grove stands as a testament to the best in humanity and the best in the community, and it will forever remember all those lives no longer with us. It is a living, breathing testament to the heroes who diligently fought to demand and ultimately bring about change.

    The National AIDS Memorial is the only federally designated memorial to lives touched by AIDS. With that designation comes the solemn responsibility to remember those no longer with us and ensure that their memory and lives are honored into the future.

    As the National AIDS Memorial looks to the horizon, arising out of the human tragedy and triumphs of the AIDS crisis, we are committed to building the Center for Health and Social Justice. Arising out of the human tragedies and triumphs of the AIDS crisis, the Center will use the richness of place, story, object, and human gathering to support, strengthen, and lead an enduring movement towards a healthy society free from stigma, discrimination, and othering.

    Join us at the National AIDS Memorial Grove for Light in the Grove (Thursday, 11/30) and World AIDS Day (Friday, 12/1) as we continue to deliver hope for the future. Join us for those like Lashonda who continue to face injustice to ensure that nobody will be criminalized for being themselves. Join us to remember those like my dear friend, Joe, the 110,000 names stitched into the AIDS Memorial Quilt and the 4,000 names engraved at the National AIDS Memorial Grove.

    We will join together within our nation’s federally designated memorial to AIDS and, in so doing, recommit to realizing a world without AIDS! Join us in person at 12 pm or online the evening of December 1st.

    John Cunningham is the Chief Executive Officer of the National AIDS Memorial. https://www.aidsmemorial.org/

    Published on November 17, 2023