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Pride Guide, 2005-06
Until It’s Over
By Kathy O’Brien
Since the beginning of the AIDS epidemic 62,000 people have been infected in the state of New Jersey. 31,000 – exactly half – have died. People have been touched by the 31,000 who have died. For these family members and friends, many have channeled their grief into fighting this epidemic. They fight HIV day in and day out – as staff, as volunteers, as donors.
But what about the 31,000 who are living with HIV? And, the over 2,000 newly infected each year, most under the age of 25? What do the past 20 years look like to them? In New Jersey, 1985 saw the beginning of the organized response in the fight against HIV. Hyacinth AIDS Foundation, NJ Buddies, South Jersey AIDS Coalition and the AIDS Resource Foundation for Children were all founded. Each will celebrate its 20th anniversary this year as well.
New drugs have been, and continue to be, developed. These drugs enabled people who thought they should have died 20 years ago, to live. However, these drugs have their costs. The side effects are not easy and there is simply no way to truly understand this until you have seen their effects firsthand. A friend of mine ran through all of the HIV drugs available to him. About a year and a half ago he began Fuzeon, the last-ditch salvage therapy. Last month he told me that he stopped taking it because he could no longer tolerate the side effects. He’s been hospitalized four times recently but feels that his chances for survival are better without the drug. I hope to God he’s right.
Twenty years ago President Reagan couldn’t bring himself to even say the word “AIDS”. In 2005 we are still fighting stigma and discrimination. We must fight to keep the HIV agenda – funding, prevention, research – focused on science, not ideology. We continue to fight those who use the term “moral values” to condemn us. AIDS organizations have been targeted by the federal government because of “inappropriate” content on their Websites or in their outreach programs aimed at men who have sex with men. We have legislators in New Jersey who refuse to even consider the idea of needle exchange, the prevention method most needed in a state where over 50% of infections are directly related to injection drug use.
In the last 20 years we’ve seen public policy initiatives that enacted legislation such as the Ryan White CARE Act, which provide the lion’s share of funding for HIV programs in the state. We fought for legislation that protects the confidentiality of people living with HIV. We fought for laws that protect people living with HIV from discrimination in housing and employment. We fought for funding that provides medication, housing and other services.
In New Jersey we have to fight for resources that must stay in New Jersey. Sandwiched between the two large metropolitan cities of New York and Philadelphia, it remains difficult for us to receive the necessary resources. Earlier this year CAEAR (Communities Advocating Emergency AIDS Relief), the national lobbying organization of AIDS providers, recommended that parts of New Jersey merge with New York City and Philadelphia. This recommendation will result in the loss of critical funds that are needed in New Jersey to provide services. It is also difficult for AIDS fund-raisers in New Jersey to attract the same media attention as similar events in NY and Philly. Too often we lose donors to those events, resulting in a direct loss of dollars to New Jersey. Forty thousand people will take to the streets of New York City and 20,000 in Philadelphia for their AIDS WALKs – In June, AIDS WALK New Jersey will have only 2,000.
Twenty years ago gay men were at the forefront of the fight. They had the power and the resources to take on the federal government. They understood the system and were able to fight it. They knew how to organize and they knew how to raise money. When they didn’t know or understand something, they weren’t afraid to ask questions – to lobby; to fight. Gay men and their lesbian sisters developed the infrastructure that exists today. Today’s activists look different from the gay men of 1985, many of whom didn’t make it until the new drugs came online. They – like the gay men who came before them – see their communities destroyed by this virus. The difference is that the folks who are in the trenches today – participating on planning councils throughout the state, going to Washington, D.C. each year to fight for funds – are much different than the gay men in 1985.
Today’s activists, more often than not, are people of color – both men and women. They come from places like Newark, Jersey City, Camden and Trenton. Many are all too familiar with the despair of substance abuse – by either themselves or their significant others. Many have little or no college education, and yet they are willing to challenge a system that they may inherently distrust. They come to Washington each year and they meet with our legislators, sometimes having three and four meetings a day. Each time, they tell their story: about how HIV has impacted their lives and their communities. They go and beg for attention and money, even when meeting with a legislator for whom HIV is not a priority. And so, 20 years later, the people have changed but the story stays the same. Communities, families, individuals continue to be infected and affected. New infections continue to occur. There is no cure. There is no vaccine. The fight continues, and the GLBTI Community is needed now more than ever. If you haven’t yet joined the fight please donate, volunteer, or walk the walk and lobby your legislators: Until it’s over.
[Kathy O’Brien is the Director of Business Development & Community Relations at Hyacinth AIDS Foundation. For more information, go to www.hyacinth.org or www.awnj.org.]
Revised July 12, 2005