by Janet Weinberg
Fourth of July weekend 1981 looked like it was going to be another beautiful long weekend on Fire Island Pines, much like the past two decades of weekends had looked like for some gay men. This weekend had a chilling change to it. Lawrence Altman’s article in the New York Times had the following headline: "Rare Cancer Seen in 41 Homosexuals."
With these words, the party stopped at least for a moment. As men were quietly enjoying their weekend, some of them knew that their lives were about to be greatly altered.
Six gay men got together on August 11, 1981 in the living room of Larry Kramer’s home and the rest is history. GMHC had its humble beginnings. Three of the men in that living room are no longer alive.
As you can see, the HIV/AIDS movement was built out of fear and the need to be empowered. The early programs at GMHC were started out of necessity. The first HIV hotline began with a phone and answering machine in the closet of Rodger McFarlane’s living room. The hotline rang off the hook with terrified men asking questions and wondering where to find the most reliable information about the “gay cancer.” Rodger became the first paid Executive Director of GMHC. To this day terrified people call and write to GMHC’s helpline looking for the most reliable information they can get. Inquiries come from all over the world.
The next program to begin was called the Buddy Program. This program assigned a volunteer to a homebound person with what was then called Gay Related Immune Deficiency or GRID. Buddies would do everything from holding a dying person’s hand to washing their clothes, food shopping, and helping with phone calls. Why did we need buddies? The medical world was afraid of people with AIDS. They would gown up in outfits that were fit for space travel but not for dying people. There was no human element to the care. We were watching 20, 30, 40 and 50 year olds dying long before they reached the prime of their lives and their deaths were ignored. As Rodger McFarlane said during a GMHC video about the 25th anniversary of HIV, “whole zip codes were redlined out of insurance and no one gave a shit.” The buddies cared. This program was so successful that it was replicated all over the country.
These early beginnings led to an agency that has changed as the disease has changed. Yes, breakthroughs allowed people to live much longer and regain their strength. But let us not forget that in the United States, according to the Kaiser Family Foundation as of June 2011, there are 8506 people on a wait list for access to drugs through the AIDS Drug Assistance Program (ADAP). So who will live and who will die? Those who have access to medical care and drugs live. Those who are poor, undocumented or do not have access to care will die. Yes, in 2011 we have people dying of AIDS due to lack of access to medicine and care.
Currently, those most affected by HIV are black, white, and Latino MSM (men who have sex with men) and African American women. The most common denominator for all of these groups of people is poverty. Recently, GMHC needed to find a new home after being in its Chelsea location for 15 years. We looked at about 40 properties and made offers to close to half a dozen of these possible new homes. Dr. Marjorie Hill, CEO, was taken aback when several of the representatives for these properties asked to come see where GMHC was housed. At first, she was delighted to show off GMHC’s services. She then realized that when real estate shopping, people do not ask how you currently live in order to decide whether or not they should accept you as a tenant. From this hard lesson we know that stigma continues to be a driver of the epidemic.
Today, GMHC is newly housed at 446 West 33 Street, between 9th and 10th Avenues, in New York City. The most utilized programs include the hot meals program, mental health counseling, 12-step meetings, pharmacy services, legal services, benefits and entitlements assistance, housing assistance programs, workforce development, community outreach and prevention services. Public Policy continues to fight bad legislation that passed in the 1980’s and early 1990’s and to fight for new legislation to protect people living with or affected by HIV 30 years after the start of this scourge.
Outcomes for those with access to care have changed over the 30 years. Outcomes for others have not changed one bit. Disparity continues to play a big role in HIV. Gay men and men and women of color are disproportionately affected.
Thirty July 4th weekends have occurred and the sun still glistens over the beautiful Pines beaches. The houses are still filled with gay men. But their landscape will never be the same again. We are forever grateful to those six men who had the foresight to create GMHC. It is their shoulders that we stand upon 30 years later.
Janet Weinberg is the Chief Operating Officer of GMHC. Her article was originally published in the AIDS United blog on July 14, 2011.
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