As the beat of the music roared in my head, I looked around at the large gathering. In the crowd were some recognizable faces and others I had never seen before in my life. In the middle of the group were two shirtless go-go dancers gyrating to the heavy thumping electronic beat, drawing a large crowd of smiling men of all ages. In the audience at the bar was another group of unrecognizable faces as the free alcohol was being poured into bottomless cups. It was the Christmas season so everyone was in a festive holiday mood, and the open bar and complimentary food added to the excitement. This wasn’t a banker’s party or a shindig thrown by the boys on Wall Street. It was a party organized by GMAD (Gay Men of African Descent), my employer at the time. An NYC based agency that was in the fight against HIV among gay black men. The atmosphere could have symbolized that the fight against HIV was over, but sadly the fight was just beginning.
In the last few years, many organizations whose mission was to outreach and provide HIV prevention to the people of color communities, have either seen their doors closed or they remain open with drastically reduced funding and staffing or program cuts. There is much speculation on the cause in the decline of financial support programs, especially to New York City non-profits working with HIV clients. Causes have ranged from racism, accusations of misappropriated funds, the shift in focus to gay marriage and an unproven perception that, since HIV has decreased in the white community, resources are no longer needed in the people of color communities. One thing is clear, though: from a non-profit standpoint, since the arrival of HIV more than 30 years ago, HIV has morphed from a grassroots cause into a business. This business of tackling HIV in NYC has greatly affected the gay men and women of color caught in the middle of this battle. How this model came to pass requires a look at the past.
In the 1990’s, many HIV non-profit agencies opened their doors to specifically service the growing number of people of color who were quickly becoming infected with the HIV virus. During this time, agencies such as GMAD and POCC (People of Color in Crisis) grew from informal organizations, meeting in free to low cost community spaces, to brick and mortar institutions. Meetings of friends, who gathered to address a common goal, were now replaced with boards and bylaws to govern how to create innovative ways to educate the target population and prevent HIV.
New ideas were created that seemed to resonate with the community’s needs. Local NYC areas saw the introduction of programs such as “Brothers Gonna Work It Out”, a behavioral intervention program that provides an opportunity for black gay men to explore their decision making processes related to their health; and SISTA, a program designed to increase condom use among African American women. Social marketing awareness campaigns were born and provided a visual context for the discussion about HIV in the black community. Support groups that focused only on people of color issues emerged as discussions of racism and inequality were inserted in the dialogue. A dialogue that gay white men didn’t have to address as it was insignificant in their HIV treatment.
Financial support was abundant for HIV agencies, and once simple potluck gatherings turned into black tie affairs. Awareness of agencies serving the people of color communities increased both locally and nationally. GMAD introduced Pulse, a new glossy lifestyle magazine filled with vistas of beautiful homes and quasi celebrities. Except for the few pages which addressed HIV, the bulk of the magazine showcased exotic trips and high end clothing.The magazine was introduced during a time when sales of traditional print media were decreasing and consumption of internet media was increasing. I’m sure people were wondering why a social service agency was moving into the magazine publishing business. If it was to create a cash flow independent of grants, it would have been seen as a great move. But the opportunity to generate revenue was lost as the magazine was offered free.
When it came to visual social marketing, young cute boys dominated the advertising of HIV agencies, as if to communicate that these young men were the only victims of this deadly disease. The sad fact is that they were not the only representation of HIV. According to recent statistics, HIV has greatly impacted the entire black and Latino communities, especially in major cities like New York City. The CDC reports that in 2011, 23,168 people of color in the United States are diagnosed with HIV and the age group affected the most are those between 40-49, yet the age group is not reflected in outreach and prevention efforts. Unlike the young men represented in HIV advertising, most individuals with HIV are not wearing designer clothing nor do they have a reason to smile. Most are classified as low income and may have very few resources. They frequently receive substandard health care and live in fear of HIV stigma and the consequences of people from their community learning about their status. In addition they are faced with other societal barriers, such as poverty and crime. For some, HIV status is a low priority when more immediate concerns, such as surviving day-to-day dominate their lives. Yet somehow these individuals have become the forgotten, even by the agencies which were formed to meet their needs.
In NYC, the party continued. GMHC (Gay Men Health Crisis) held star-studded fund-raisers, which gave a stage to the growing Ball scene. Described as an underground LGBT sub-cultural communal event in the United States in which people “walk” (i.e., compete) for trophies and prizes. They swarmed in large numbers to the welcoming atmosphere of community. Not to be outdone, POCC held well attended, extravagant gay Black Pride celebrations at the city beaches. Excitement was contagious each year with the inclusion of A-list celebrities headlining the evening concerts. One year, it was rumored that Janet Jackson was to be extended an invitation to perform.
Big money was flowing and it seemed like the agencies serving the community had plenty of it to spend. Everything was big-perhaps to reflect the spirit of New York City. Yet, from an outside perspective, it appeared many of the functions were less about addressing the growing HIV epidemic and more about egos. Often times it seemed no expense was spared to top what was done the previous year. The events were getting bigger and bigger along with the increase of infection in the black communities.
Criticism was even directed at the city and the financial gains one could receive for having a positive HIV diagnoses. Although the requirements have changed, simply being positive in NYC allowed an individual to obtain housing, health care and a monthly stipend. This appeared to be beneficial especially for those who were homeless and had little resources. A story in OUT Magazine featured a story of men who expressed how having a positive status, advantageous to their way of life.
The growing practice of HIV agencies in NYC to entice prospective clients with monetary incentives became the norm. Agencies discovered it was effective at bringing clients in their doors by enticing clients with gifts such as movie tickets, gift cards and subway passes. As a result, attitudes in the community started to shift. People who wanted to learn their HIV status now demanded to receive compensation for doing so. An informal client information network was formed allowing people to find loopholes in a system that didn’t properly track duplicating clients. This allowed an individual to receive incentives at multiple agencies around the city for taking HIV tests and receiving incentives, despite knowing their HIV status. It wasn’t unusual to have a person call GMAD and rather than ask if support was offered for those with HIV, the question was focused more on what incentive was offered. Oftentimes the financial incentive was the motivation driving people as opposed to the sense of well-being and personal comfort derived from knowing one’s health condition. This exploited opportunity made it unfair for the people who were truly in need of incentives provided.
Yet agencies didn’t change their practice because the number of client contacts was becoming increasingly important. Non-profits, accepting funding support from the NYCDOHMH (New York City Department of Health and mental Hygiene), were obligated to deliver a certain number of clients each quarter. Targets had to be met or agencies risked a reduction in future funding. These funding criteria created a system of agencies in competition with each other to bring in as many people as possible by any means necessary. Although New York City is vast, the many HIV non-profits often serviced the same individuals who went back and forth to the agencies. And with limited HIV funding, agencies, instead of working together, were in direct competition with one another over the small pool of funding. This created a lost opportunity of collaboration and duplication of services.
Meanwhile, the rates of infection in the black community continued to rise. But the face of HIV also was starting to have a different look. Straight women and elder populations, two groups that were afterthoughts to many agencies were beginning to quickly become affected and infected by the HIV virus. Despite the rise in exposures they were often the last ones asked to sit at the table (in deciding how to address HIV), if they were invited at all. Agencies that worked exclusively with gay black men also struggled with how to respond to rising infection rates in the growing transgender community. These agencies often unsuccessfully used organizational models suited for the gay black men instead of creating a new framework designed exclusively for the transgender community. Providing a safe space for transgender people was no easy task. The transgender community has historically always resided on the fringes (or just outside the edge) of the mainstream gay world and some gay-focused agencies were having internal difficulties in accepting the group.
However, the party was winding down for many HIV agencies. The celebrity hosted fundraisers were slowly becoming less affordable. And the agencies’ one hundred percent reliance on government grants resulted in many missed opportunities to obtain more unrestricted private funding sources. These same agencies did not have the foresight to set aside capital obtained from their years of previous well attended events. Instead additional money were directed to ever increasing staff and consultant salaries along with moves into more prestigious but unaffordable office spaces.
Non-profits combating HIV was now in the position of keeping their doors open as those looking for services were next on the priority list. To remain sustainable, non-profits started to change their mission and work to meet the changing need of funding. Innovation was replaced by outdated approaches. Risk-taking was seen as a bad business strategy because agencies feared losing funding if they were unsuccessful.
Ultimately, under the scrutiny of accountability and inadequacies in prevention programming, increased oversight by government grantors revealed the widening cracks in the walls. In one such example, the executive director of POCC was investigated for improper use of city funds. According to published reports in Gay City News and other media, the POCC executive director at the time spent nearly 80,000 dollars of agency money on personal expenses, including numerous round trip flights to Los Angeles to visit his partner. There were also accusations that agency money was used to bail friends out of jail. And the most damning allegation of all? The infamous “POCC casting couch’’ for those looking for a job at the agency.
Funders began to realize that they had not provided sufficient oversight. Following an investigation, the ED was fired, the agency (which had a two million dollar budget) had its funding pulled, forcing it to close its doors. And a much needed resource for people in the gay black community was gone. Next, the spotlight was pointed at the New York State Gay Black Network. Shortly after, an extensive audit uncovered unaccounted for city funds, the agency was de-funded and also forced to close its doors. The next major agency to be affected by the increased oversight was the Bronx Gay and Lesbian Center. It was forced to close after the agency’s former chief was charged with stealing $338, 000 dollars for personal use, including vacations and dog walkers. Now many in the Bronx, especially LGBT youth of color, are left with few resources.
The Band Stopped Playing
As I made my way to the window of the holiday party overlooking the Hudson, I saw my reflection and knew, as a gay black man living with HIV in NYC; it was the end of the party. When it came to HIV, the priority was no longer there. Gay marriage was driving the discussion and money was shifting in that direction. Based simply on the shifting focus of resources, you would think the battle to end HIV was won. Sadly, though, it remains a critically important health issue in certain communities. But instead of preparing for battle, here we were celebrating with rivers of alcohol flowing and unlimited hors d’oeuvres to consume.
Perhaps it would be the last lavish celebration thrown by an HIV agency. The focus was now squarely on us at GMAD and the deals done in the dark that were now coming to light. The community was learning that staff was not getting paid regularly but were told to keep quiet about it. Employees, once having the benefit of their payroll direct deposited, were no longer available as it was easier for GMAD those weeks when it was uncertain if payroll was going to be met. Community reaction to both GMAD’s effectiveness and its predicament was mixed. Some supported the agency and others felt the leadership was no longer in tune with the growing need of the gay black community.
As the party ended, GMAD’s own crisis loomed. The director was questioned about missing donated funds, followed by an unfavorable news story which resulted in his resignation. Since then, GMAD has been in a fight to keep its doors open in the midst of recent cuts to programming and funding. The once great agency, which in the past could afford to rent the historic Apollo Theatre for fashion shows, was now trying to figure out how to pay the rent.
The party is definitely over and the band has gone home. In its place, a new approach on how to confront HIV is developing. With new leadership at mentioned HIV non-profits, there are new opportunities to refocus on the communities that were briefly ignored. There are prospects to explore ‘out of the box’ fresh ideas, on how to tackle a disease which continues to ravage certain communities. Perhaps this is a chance to revisit grassroots efforts, a time when missions were driven by the work and not by the funding. When HIV was about people and not about business. Whoever is in charge will have to be creative. Have the ability to reach out to the forgotten community of women, elders and Trans. In the process restore the faith within the community that HIV agencies in NYC have their best interest in mind.
Funding that was once easy to obtain is now scarce. And the funding which is available has shifted to a medical model of living with HIV as a long term disease. Efforts to develop and create innovate ways to reach those who are hard to reach should be explored. And if successful, the onus of the community will be to hold agencies accountable and not celebrate as if the fight against HIV has been won.