Long Term HIV Survivors Discuss Aging
By Chandra Wilson
Wednesday, June 5th is designated as national HIV Long Term Survivors Awareness Day. The Long Term Survivors Wellness Coalition, a New York-based coalition dedicated to identifying and addressing the needs of people in the long-term survivor community hosted the event, “We’re Still Here!,” a day-long celebration.
The Long-Term Survivors Wellness Coalition, which consists of representation from the NYC Health Department, The New York City Lesbian, Gay, Bisexual & Transgender Community Center, Visiting Nurse Service of New York, SAGE Advocacy & Services for LGBT Elders, ACRIA, GMHC (Gay Men’s Health Crisis), and AgingHIV.org, was formed two years ago by AIDS activists and original ACT UP members, Andy Velez and Timothy Lunceford-Stevens, who envisioned a collaborative of HIV/AIDS service organizations and individuals.
HIV long-term survivors experience unique circumstances and special needs. They are pioneering the experience of aging with HIV and all its attendant challenges: medication management, drug interactions and side effects, comorbidities, maintaining good mental health and sexual wellness. They are a population of great resiliency and strength. Recently the New York City Department of Health held multiple focus groups throughout the City to explore gaps in care for this underserved population.
Timothy Lunceford-Stevens led attendees in a moment of silence in recognition of the recent death of the coalition’s co-founder, Any Velez.
“As long-term survivors of HIV, we know how to be strong, resilient, and advocate for our health,” said Graham Harriman, MA, Director of the Care and Treatment Program at the Bureau of HIV/AIDS Prevention and Control. “Today we come together to celebrate in a spirit of radical self-love, knowing that in order to support each other and nurture a world that embraces all of us living with and affected by HIV, we need to start being mindful of our bodies, our diet, our mental health, our relationships, and our ability to be present with each other as a community.”
“As the number of long-term survivors throughout New York continues to grow,” said Oni Blackstock, MD, MHS, Assistant Commissioner of the Bureau of HIV/AIDS Prevention and Control in her opening remarks. “The Bureau remains steadfast in our commitment to both prevent and treat HIV/AIDS among all New Yorkers.”
Highlights of the celebration, which took place at the Baruch College Vertical Campus Conference Center, included a Long-term survivors panel discussion and an unveiling of GMHC/ACRIA’s new National Resource Center on HIV and Aging, by Stephen Karpiak, PhD, International AIDS Society member and Associate Director for Research at the AIDS Community Research Initiative of America’s (ACRIA/GMHC) ACRIA’s Center on HIV and Aging, and Associate Faculty at New York University.
The Long Term Survivor’s Wellness Coalition panel discussion was moderated by Ed Shaw, a founding member and Chair Emeritus of the Consumer Advisory Board at GMHC, who has dedicated more than 25 years to educating and organizing to raise awareness about the particular needs of seniors at risk or living with HIV/AIDS. The panel included Nationally recognized writer, speaker and long-time HIV/AIDS activist, Tez Anderson, founder of “Lets Kick ASS—AIDS Survivor Syndrome;” Julia Sanchez, a Certified Peer Worker and Facilitator for The Positive Life Workshop at The Family Center; Octavia Y. Lewis, MPA, a transgender woman of color living with HIV who works as an activist, advocate, mother and scholar, and is currently a Community Ambassador with AmidaCare; and Billy Fields, a former AT&T manager and advocate appointed to the NYC HIV Planning Council by former Mayor Michael Bloomberg and current Mayor Bill De Blasio.
“Helping long-term survivors of HIV—both men and women—feel confident, proud and supported, with access to the health care they need to live full and active lives is what the coalition strives to do,” said Arthur Fitting, RN, LGBT Program Manager at the Visiting Nurse Service of New York. Other members of the Long-Term Survivor’s Wellness Coalition in attendance were: Stephen Karpiak, Gregg Bruckno, Timothy Lunceford, Vanessa Gonzalez, Bill Gross, Graham Harriman, Scott Spiegler, Sarah Kozlowski and Rafael Ponce.
Several awards presentations were made to advocates and members of the Coalition, and networking and breakout activates were held throughout the day focusing on food, cooking, nutrition and wellness demonstrations from Sophia Medinsky, RD at Heritage House, art therapy (by VisualAIDS), Yoga/Meditation (by Safiya Hassan), a sexual wellness discussion (by August Eckhardt from The Pleasure Chest) and a DJ, photo booth, dinner and dancing. The films Last Men Standing (documentary from San Francisco Chronicle) and Never Alone, developed by the Long View Coalition were also screened.