The personal side of AIDS

Twelve years after a Los Angeles man died, his pharmacy receipts and medical bills sit in a Los Angeles archive with a hand-written message declaring: "The Cost of AIDS."

In a San Francisco library, a photo collection capturing the exuberance of gay liberation in the 1970s and its tragic collision with AIDS fills many cartons.


Bureaucratic paperwork recording what critics said was government's slow response to the disease shares shelf space in both cities with old boxes of condoms, safe-sex pamphlets and editions of a satirical magazine aimed at amusing people with HIV-AIDS.

Those items and more are included in three enormous archives in Los Angeles and San Francisco that document the acquired immune deficiency syndrome epidemic and its effect in California and beyond.


Thanks to federally funded efforts, hundreds of thousands of unsorted documents and artifacts are cataloged for scholars, with summaries being readied for Internet exposure.

"It is important for us to see not only how AIDS was treated medically but to document historically people's responses to it ... who the heroes are, who the villains are. Because how we treated this epidemic may give us some guidelines on how we treat the next one, whether it's avian flu or whatever comes up," said Michael Palmer, an archives project director at the ONE National Gay and Lesbian Archives.

At that research center, which is affiliated with the University of Southern California, Palmer and other librarians have finished indexing an estimated 200,000 items in the AIDS History Project. The material includes minutes of the Los Angeles County Commission on AIDS' first meetings in 1987, along with early posters encouraging condom use with pictures of musclemen asking: "Are You Man Enough?"

The other projects are at the library at the University of California, San Francisco and the Gay, Lesbian, Bisexual and Transgender Historical Society in San Francisco.

"Most fundamentally, it means this history won't be lost," said Paul Boneberg, executive director of the historical society. "Our collections tell the story of average people and smaller organizations caught up in the greatest national disaster of modern times."

Citing the rare opportunity to save early records of such a significant event, the National Historical Publications and Records Commission awarded a shared $170,000 grant to the historical society and UC San Francisco's special collections library. The federal agency also gave about $195,000 to the ONE center, much of it used for the AIDS material. The work has taken three years.

The history is contained in records compiled, for example, by the California Department of Health Services and in protest fliers from groups that include Mobilization against AIDS. It is found in diaries and in old copies of Diseased Pariah News, a gallows-humor magazine.

No matter the source, nearly every file carries an emotional wallop: Panic and outrage as the death toll mounted in the 1980s and early '90s and, later, anxious relief among people lucky enough to receive and tolerate new drugs that keep the human immunodeficiency virus that causes AIDS under some control.


The materials arrived in many ways. Some government and agency employees rescued records from the shredder. Some compulsive savers, facing death, donated letters, pamphlets and protest buttons because they feared that relatives would discard them after their funerals.

Some items showed up without explanation. For example, in the middle of state records about a safe-sex education pamphlet, archivists found a November 1985 letter from a mother to her gay adult son.

She had just seen the television movie An Early Frost about a young man telling his parents he has AIDS, and she wrote: "Am I worrying too much about this AIDS problem? If you can alleviate any of my fears about the disease, please do."

Items like that resonate, said Palmer.

"With an archive, you have to be clinical. You look at it as a record, not like being a doctor or a nurse," he said. "But it still affects you, the sheer complexity of the situation and all the real lives hanging in the balance."

Scholars insist the archives - with similar collections at public libraries in New York and San Francisco - will be invaluable as the epidemic enters its second quarter-century.


Richard McKay, a history doctoral student at the University of Oxford in England, recently explored the AIDS archives in Los Angeles and San Francisco. He is working on a dissertation about the emergence of the discredited concept of a "patient zero" who allegedly was a central disseminator of the disease. Shilts' 1987 book, And the Band Played On, portrayed a French-Canadian flight attendant, Gaetan Dugas, as willfully spreading the virus, and McKay is trying to find people who knew Dugas.

The collections helped bring McKay's research alive.

"A big difficulty in the history of medicine is that records are left mostly by practitioners. It's often very difficult to access the voice of the patient," McKay said. "These archives do a lot for that, to a greater extent than others do."

Larry Gordon writes for the Los Angeles Times.

Documenting AIDS

Three enormous archives in Los Angeles and San Francisco document the development of the AIDS epidemic and its effect in California and beyond.