Advocating to End the AIDS Epidemic in New York State
In the early hours of January 22nd, we congregated near the light of the fluorescent Walgreen’s sale sign on a New York City street corner, too groggy to appreciate its metaphor: Standing within the harsh illumination of cost effectiveness in order to be visible, but knowing better than to count on it for warmth. We likely looked like a rather coincidental crew: Varied in age, class, and race, seemingly as untethered as the accumulation of crosswalk crowds that would busily oscillate on the same sidewalk later that day. As the traffic signals changed, we kept standing, waiting.
Upon closer inspection in the light of the coming sun, one could have noticed the threads of our commonality. Smatterings of buttons, hats, sweatshirts, bags, all donning a raised fist or a familiar logo. Signs only partially obscured by the thick arms of winter coats. Those lines — etched from crossed lines — around the mouth and eyes that tell of an urgency that has become chronic. We were staff and clients of community-based organizations around the city, but that association only explained the buttons. We were advocates, but that identity only explained the signs. Ultimately, what called us together that chilly morning was the fact that each of our lives were affected by the HIV/AIDS epidemic in New York State, and we were there to do something about it. When the bus arrived we formed another line as we, a unified voice, headed to Albany.
The Ending the Epidemic (EtE) Legislative Awareness Day is a yearly advocacy event that takes place within the New York State Capitol. The day is orchestrated to celebrate progress, announce shortcomings, and highlight obstacles to meeting the New York statewide goal to end AIDS by 2020. Governor Andrew Cuomo announced his ambition to end AIDS as a statewide epidemic in 2014, in the form of a three-point plan:
- identifying people who are unknowingly living with HIV and linking them to care
- linking, retaining, and reaching viral suppression among people known to be living with HIV
- providing those at risk of HIV infection with adequate protection, such as Pre-Exposure Prophylaxis (PrEP) and post-exposure prophylaxis (PEP)
Guided by the blueprint created by the appointed EtE Task Force, agencies around the city and state have since integrated the EtE plan into priorities and practices. This has led to successful initiatives such as the Undetectables program, which was organized and implemented by Housing Works, my placement organization during my Global Health Corps fellowship year.
This year, the EtE Legislative Awareness Day called for support on three initiatives deemed critical to meet the blueprint goals of reduced HIV transmission:
- statewide rental assistance program for low-income people living with HIV/AIDS
- statewide support for the use of Supervised Consumption Spaces
- increasing state funding to house and assist runaway and homeless youth
Accordingly, this year’s EtE Legislative Awareness Day encompassed multiple approaches for raising awareness and generating support among state senators regarding the above day’s initiatives. Within the Capitol building, Housing Works and partners held a call-to-action press conference where moving testimonies of successful programs and heartbreaking tales of lives lost reverberated through the marble lobby. Exercising peaceful civil disobedience, people refused to move from the Capitol floor while chanting rhythmic summaries of the day’s initiatives, embodying their commitment to be seen and heard. Finally, and the part of the day I found most exciting, we dispatched as small groups and attended formal meetings with state senators. Within these meetings, we reviewed factsheets that communicated the demonstrated need, empirically-based rationale, and projected benefit of investing in the outlined initiatives in order to reach EtE goals. After expressing this research, group members shared personal narratives connecting statistics to a lived experience.
It can be complicated to gauge the direct effects of press conferences, civil disobedience actions, and educational lobbying meetings on proposed budgets and legislation, but these are important aspects of how social change happens over time. We are certain that the public voice behind the EtE movement was clearly heard and a sense of urgency and accountability was generated around the goal of ending the AIDS epidemic in New York State by 2020.
Paige Andrews was a 2017–2018 Global Health Corps fellow in the U.S.
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