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A Letter to Jenny

Translated and adapted to English

January 1997

INSTEAD OF asking a question, I want to comment on services offered by AIDS agencies. When AIDS agencies came into being, there was a sense of urgency. The person who tested positive was treated as if it was their last day on earth. The agencies were full of compassion and extremely attentive. HIV infected people were often incapacitated and disabled. Agencies went to great lengths to take care of all of life's problems for the infected client. Today, services seem to be provided for the wrong reasons. There are many new agencies that seem to view AIDS as a money making opportunity. Established others, seek to find new and creative ways to expand in an effort to obtain more funding. In both cases, services do not seem to improve. Since everyone is grasping for limited and shrinking funds, there is an ongoing battle among agencies in the AIDS arena. Many use underhanded tactics which lack ethics in an attempt to attract clients.

Just Numbers

As clients, we understand that in order for agencies to justify jobs, they must document that they are servicing large numbers of infected people, therefore, serving clients becomes a game of numbers. The one with the most numbers gets the most money. This creates an atmosphere of competition and unfortunately many service providers cheat at the game. In an attempt to get more money to further their careers, they often use underhanded tactics, not caring if it damages other organizations or even clients.

Perhaps, if governments were to do an investigation, they would find falsification of documents which is clearly against the law. Here is where politics comes into play. The agencies who have connections with people who have a powerful influence over AIDS funding are the ones who get the most money.

In any case, once the goal of securing funds is achieved, they are no longer interested in pampering the clients. People who work for these agencies grow tired of being compassionate and understanding. They simply want to put in their hours and get their pay check. Sometimes they even attempt to weaken and dispirit the clients by manipulation and by minimizing our suffering. I think most agencies are guilty in one way or another.

I would like to give you a non-agency specific example of what I'm talking about. A while back, Los Angeles county implemented a transportation program. This one program helped us in more ways than any agency could possibly do. The county claimed that too many people were abusing this service and cut the funding almost to half of it's previous budget. This left many of us with no way to get to services, support groups, or clinic appointments. This is only one example.

Sub-Quality Care

In addition, we can see the quality of our care declining at the AIDS clinics. I suspect that the budget has to be stretched further because we are living longer. The ones suffering the most are the ones who did not dye fast enough.

The structure of many of the agencies is changing, to accommodate less funds and more clients. Now we, the people with HIV/AIDS are starting to realize that in many ways we are nothing but numbers for the many agencies that have profited from our illness.

Dirty Politics

I agree with a previous article published in Women Alive. The politics of AIDS are low-down and dirty. And in response to your last issue; Yes, I am pissed-off about AIDS. The "face" is not the only thing that is changing in the world of AIDS. The perspective of the people with those faces, those of us who are infected, is also changing. We have become painfully aware of what is happening concerning the agencies and the egos that guide them. We are alert and watching.

Thank you for printing this letter.

-- Anonymous.

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This article was provided by Women Alive. It is a part of the publication Women Alive Newsletter.