Sunday, May 04, 2003

26,000 AIDS PATIENTS, S.F. CHRONICLE CAN'T QUOTE ONE

Back in the 1980s, the late Michael Callen and other people living with AIDS in New York City were fed up with being called and treated like victims because they had contracted the disease. They founded the People With AIDS Coalition, PWAC, with one central theme: self-empowerment for PWAs.

To spread their philosophy, they began publishing the PWAC Newsline on a monthly basis. One of the best features in the Newsline was a column written by Callen and the late Ken Meeks that monitored the mainstream media coverage of AIDS and people with the disease. Frequently, Callen and Meeks rightly took reporters to task for either portraying patients as victims with little or no control over their destinies, or held the news media accountable when they failed to included the voices and concerns of persons with AIDS.

Unfortunately, the contents of the PWAC Newsline on not available on line, but two important beliefs that drove the founders are.

It was vital that PWAs “[f]orm caucuses to choose their own representatives, to deal with the media, to choose their own agenda and to plan their own strategies,” to remind reporters and the general public that “[w]e are People with AIDS and People with AIDS-Related Complex (ARC) who can speak for ourselves to advocate for our own causes and concerns.” [1]

I was thinking about the PWAC Newsline media watch column recently because of another article, in a seemingly endless series of stories appearing the San Francisco Chronicle about the very real present-day needs of AIDS patients, that didn’t include a single quote from a publicly identified person living with HIV/AIDS.

On May 1, the Chronicle ran an otherwise excellent piece about the state of California making plans for cutting back on the availability of AIDS medications, due to the budget deficit. [2]

According to the Chronicle, “About 26,000 Californians with AIDS rely on ADAP, or the AIDS Drug Assistance Program, for their costly life-sustaining antiviral drugs as well as treatments for a variety of infections that result from weakened immune systems.”

The paper also quoted a lobbyist for the San Francisco AIDS Foundation, expressing worry about the looming AIDS drug crisis for people with the illness.

"We're very concerned," said Dana Van Gorder, on behalf of the foundation. "There could be literally a few thousand Californians who suddenly find themselves in a situation where they cannot find medications."

A total of four AIDS bureaucrats, including Van Gorder, were quoted and, in general, I am in agreement with their sentiments.

However, it would have made for a more honest piece of AIDS journalism, heck, plain ol’ journalism, if the Chronicle had bothered to find just one of the estimated 26,000 state residents with AIDS who depend on ADAP for their AIDS-fighting medications to quote. Perhaps one AIDS patient could have expressed the fear he or she feels about the possibility of losing access to the drugs.

Such a story would have driven Callen and Meeks up the wall with frustration. They often wrote about how journalists had a responsibility to include the voices of women if the story was about abortion, or the concerns of black and Hispanics if the article in question pertained to affirmative action, and, of course, when the piece dealt directly with AIDS and those afflicted with the disease, the reporters should locate a PWA or two to quote.

While great strides have been made in combating AIDS and keeping patients alive longer, this sort of Chronicle story, omitting the personal concerns of someone actually with the disease, shows me how in some ways, we are still living in the dark days of the 1980’s, when reporters routinely felt no need to put people with AIDS in their coverage.

Sources:

1. http://www.geocities.com/pwacoalition/14-misc.htm
2. http://www.sfgate.com/cgi-bin/article.cgi?file=/chronicle/archive/2003/05/01/MN300438.DTL


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