Agent of Change- HIV/AIDS Activists Demand the End to the Madness

"Hope will never be silent" Harvey Milk

            Over the last few years, nonprofits in general are experiencing a decline in federal and state funding, donations in the private sector and availability of foundation and grant revenue.  I became an HIV/AIDS activist in 1985 when I was in my twenties. Personal loss, anger, and a vow to see the end of HIV/AIDS is what has kept me moving towards that goal for twenty five years. It is one thing to be young and idealistic and following a calling. Many have done so. It’s what young people do. But what happens during the years that follow and strides are made, along the way there are a few victories, with as many setbacks. If one falls away and does not see it through to the end, are they still a change agent?

            In the field I chose to work in, once funding was deemed necessary by the government in the form of the Ryan White ACT. It stated those of lower income will receive their medication, housing, and other basic needs if they are HIV positive, with or without an AIDS diagnosis. It was a victory in our eyes.Though in the early years, HIV/AIDS took many lives due to the lack of antivirals, Social Security set up harsh restrictions disallowing those infected to receive disability income unless they were near death. More than often, people were too sick to work, therefore too sick to afford medication, food or shelter.

            As an agent of change and activist, I realized that just because we had won what we thought was a huge battle, it was only the beginning. It was a huge victory to have a system that the poor and sick could access, but it certainly wasn’t enough to fill their  needs because the funding was and is to this day, considered a “last resort” funding mechanism. We were going to need public exposure and dispel the issue of stigma. It was at this point, we realized though we were strong, healthy, and loud, it was going to take those who were infected as well as affected by AIDS to advocate. Who would want to put themselves through such a process when they are already battling health issues, much less confronting social problems as well?

            It was at this point, being a change agent took on yet another meaning; educator, by changing the perception of AIDS in the public arena. This realization was as complicated as the lack of medications to fight the disease. Now HIV/AIDS agents of change took on another hat.

            By this time, we were a few years into what was now a pandemic. We had moved past the Reagan years (who never utter the word HIV/AIDS in the eight years of office) to the Clinton years. Homosexuality was being discussed and legislated by the “Don’t ask, don’t tell” policy. Several celebrities were coming out, and a few were starting to announce they themselves were HIV infected with. Finally the face of AIDS was slowly changing.

            Up until recently, we had become a bit lazy in the fight. We had anti-virals that suppresses HIV virus to the point it is undetectable in the cells. Those who were getting sick, were receiving basic needs through the Ryan White ACT. We never thought we would see the day where we were going to fight as hard as we did in the beginning. But that is where we are at. Even though people living with AIDS will be accepted into Medicaid based on an HIV positive status alone in 2014, it appears the renewal of Ryan White ACT may not see the same amount of funding it has in the past.

            We are seeing the increase in new HIV infections among the young, but have zero new dollars for prevention and education. Even less money is funneled to the sick through government programs, making us rely on foundations and private sector. In this economy they are spending less and less on giving, because of the uncertainty of the market. But my worse fear is it will take the deaths of many people to motivate a new generation to the “calling”. I and those my age are growing older, and even though the passion is there, the energy and youthfulness isn’t. I will stay in this battle until I am dead or there is a cure. There’s always something to do, even if it is to rock babies born with HIV.