On January 12, 2010, Haitians living with HIV, their advocates, and service providers sat in a room in Port-au-Prince with tough decisions to make about Haiti's AIDS funding. In the last few years, it had become clear that the Haitian government and the organization that administered funds from PEPFAR were not getting resources to the people who needed them most. It was time for a new direction, and for the funds to go toward more services on the ground.
The air in the room was heavy. The conversation was an important one -- changes needed to be made about how this funding was being used. At the time, 55% of Haiti's PEPFAR funding was taken off the top for "administrative costs." And although Haiti did provide HIV medications, the system had serious problems that prevented people's needs from being met. A lack of housing and supportive services made providing comprehensive treatment and care very difficult. Haitians with HIV also suffered intense stigma that prevented them from obtaining services.
But something else happened that day that prevented these problems from being addressed -- an earthquake that changed everything. As the walls of the meeting room began to shake, and then to collapse, the people ran into the streets and saw the entire city of Port-au-Prince literally fall down around them. In seconds, the city's already precarious infrastructure collapsed into chaos.
Haiti had once had the highest HIV prevalence in the Western Hemisphere: over 6% of its people had HIV. But significant progress had been made in slowing the epidemic, and HIV prevalence had dropped to 2.2% (lower than Washington D.C.'s rate of 3%).
Thanks in part to PEPFAR, Haiti had been able to provide 68 sites where people could get HIV treatment, and the country did extensive tracking of patients using an electronic system. The government regularly surveyed HIV and other health issues, and had launched an HIV testing campaign. Most importantly, Haiti had developed strong networks of people with HIV and of AIDS organizations that advocated and fought for prevention, care, and access to services.
As the immediate panic subsided, people searched the rubble for those lost and did what they could to find safety. As days and weeks passed, it became clear that the earthquake, which killed almost 300,000 people and displaced over a million, threatened to undermine completely all of the progress that Haiti had made on HIV. Hundreds of thousands of people lost their homes, and hundreds of crude encampments sprung up in the hardest-hit areas in Port-au-Prince and surrounding areas. But as that temporary solution became more permanent, the encampments became increasingly dangerous. Orphaned children were at high risk of exploitation. Physical and sexual violence -- especially against women, children, and transgendered people -- escalated, placing people at risk for HIV. Open sex work and exchanging sex for food and shelter became common practices, further increasing the HIV risk.
In the months since the earthquake, the situation in Haiti has not improved. Although the international community responded with significant contributions to help overall recovery efforts, much of that funding has still not hit the ground, and very little of it was HIV-specific. Over 40% of Haitians who were receiving HIV treatment and care before the earthquake are no longer receiving it, and haven't been for almost a year.
HIV-positive Haitians had been told repeatedly that an emergency plan to address the situation was in the works but that plan, once drafted, showed no real change in the way that AIDS services would be provided after the earthquake. Most egregiously, people with HIV were not consulted during its creation, and most have never seen a final version.
As the 2010 International AIDS Conference in Vienna approached, activists in New York and Haiti began to strategize about the messages that needed to be sent during the conference. Advocacy efforts in Haiti had not made much headway, and it was time to take the issue to the international stage.
Six of the delegates who traveled with New York's Housing Works to Vienna had come with PHAP+, a grassroots Haitian coalition of people with HIV and their service providers. They wanted the message to be clear: Haiti needed a post-disaster AIDS plan that included treatment, housing, food, shelter, and jobs. And Haitians with HIV needed to be involved in the process of deciding how to meet these needs.
Before the keynote speech by former President Bill Clinton (the U.N. special envoy to Haiti), a group of Housing Works and Haitian delegates placed themselves in the middle of the VIP section, directly in front of where he would be speaking. They were armed with banners, chants, and noisemakers, and were prepared to interrupt his speech to make their concerns known. Conference staff acted before the meeting even started, but the activists refused to leave the VIP area. The end result was a conversation between Haitian AIDS activist Esther Boucicault and President Bill Clinton in which he promised to address her concerns. Later that afternoon, Esther was able to meet with Clinton's staff to schedule a meeting, and Clinton himself agreed to visit one of her organization's clinics this fall.
The following day, PHAP+ and Housing Works organized a march. The group chanted their demands for treatment, housing, food, and jobs in English and Haitian Kreyol, making its way into the main session room, stopping the program. As the Haitian delegates made their way onto the stage, the conference speakers stepped aside and allowed Esther to take the microphone. She eloquently and boldly called for an emergency AIDS plan for Haiti. She informed the international HIV community that its donations had not been utilized but sat in banks across the world while people in Haiti were living in tents without clean water, food, or medical care. As her words were translated, the surprise in the room was unmistakable. Many in the audience clapped and cheered as the activists marched off the stage. Their demands had been heard.
Yet, more than nine months after the earthquake, and another two months since Vienna, Haiti is still without an organized emergency AIDS response. U.N. and USAID officials have promised an action plan, but that "plan" that was written was simply to appease critics, not to set anything real in motion. Haiti's two major health care entities are competing over the reconstruction of the health care system, and neither of them is talking with HIV-positive people or grassroots providers and advocates. The city sits on piles of rubble. Thousands of people are still living in the camps, with the threat of imminent eviction. Some HIV medication is being distributed, but treatment is still not reaching those who need it. HIV prevention is not being done in the encampments, leaving their inhabitants at risk for HIV. And now, cholera has reared its head, which will claim more lives as aid organizations rush to respond.
The need for immediate action couldn't be clearer, but both national and international efforts have come up short. It is the activists in Haiti who will get this done by refusing to stand and watch their country fall apart.
Unfortunately, grassroots organizations are being overlooked as allies, and large amounts of aid funding is going to large internationally based charity organizations that have parked themselves in Haiti. But the grassroots organizations have been able to most effectively reach people, especially people with HIV. Despite the fact that they are not being included in the response to this tragedy, people are moving forward, and -- even without government cooperation -- many small community-based services are being provided.
With the total destruction of Haiti's health care system, Haitian activists involved in the coalition PHAP+ and other grassroots organizations have partnered with Housing Works to organize clinics in places where the needs are greatest. In the initial days after the earthquake, these clinics triaged injuries and provided people a safe space. Now, they continue ensure that there are places people can go to receive HIV medications and comprehensive health care.
PHAP+ has also continued to bring light to the lack of prevention and care for people who are HIV-positive and those who are at risk in the encampments. In the months following the earthquake, they organized widespread condom distribution, sending volunteers and coalition members into the largest camps in Port-au-Prince to talk with people about HIV and how to stay safe. These actions have been tied to public criticism of the government's response and a demand for a community-supported Haitian National AIDS Strategy to rebuild its system of care for those who are HIV-positive.
Haitian activists with HIV have been more and more public about their status, which has allowed them to be clear about their needs as a community. Stigma has hampered housing provision, jobs and health care for people with HIV for years, and the earthquake has only amplified those needs. But their willingness to speak out and to demand that the government and the international community respond will be the key to Haiti's recovery.
Kristin Goodwin is the Director of NYC Policy and Organizing at Housing Works.