Documenting the toll of AIDS

Twelve years after a Silver Lake 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 massive 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 unconscionably 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 much more are included in three enormous archives in Los Angeles and San Francisco that document and memorialize the AIDS epidemic and its effect in California and beyond. Thanks to federally funded efforts that were recently completed, hundreds of thousands of previously unsorted documents and artifacts now are cataloged for visiting scholars, with summaries being readied for wider 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 & Lesbian Archives.

At that research center, which is affiliated with USC and situated in a former fraternity house on West Adams Boulevard, Palmer and other librarians have just finished indexing and filing 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, more advanced in online postings, are at UC San Francisco’s library 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, situated in a downtown Mission Street building. “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 painstaking work has taken three years.

The history is contained in dry records compiled, for example, by the California Department of Health Services and in passionate 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 that outrageously suggested giving Boy Scout merit badges for Kaposi’s sarcoma and thrush infections.

No matter the source, nearly every file carries an emotional wallop: Often it was panic and outrage as the death toll mounted in the 1980s and early ‘90s and later it was anxious relief among those lucky enough to receive, and tolerate, new drugs that can keep the 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 relatives would discard them after their funerals.

And some items showed up without a clear explanation. For example, in the middle of state records about a safe-sex education pamphlet, ONE archivists found a November 1985 letter from a woman 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.”

Many donors, of course, are dead.

A Silver Lake man meticulously clipped together 1990 bills for the anti-HIV drug Retrovir and Zovirax to treat herpes, along with paperwork for Medicare Part B, and gave them to ONE. The man, who died in 1995 at 68, apparently wrote on the envelope with a black marker: “Medical Bills (Partial) The Cost of AIDS.”

San Francisco photographer Crawford Barton, who died of AIDS in 1993 at 50, donated thousands of prints and negatives showing gay life in the Castro to the Gay, Lesbian, Bisexual and Transgender Historical Society.

He also gave many personal documents, often with a quirky touch. His 1992 datebook shows increasingly frequent doctors’ appointments, and a notebook with the Muppets character Miss Piggy on the cover details his artistic and health woes.

“I feel like I’m a flop,” he wrote as his work diminished. “There is no prescription for this.”

In happier cases, donors say they are astonished to have survived -- thanks to new drugs.

For example, San Francisco gay activist Hank Wilson gave the historical society 17 boxes of materials in 1996, when he was at death’s door with an AIDS-related brain infection from which he recovered. Some of the papers detail his controversial campaign to limit the sale of “poppers,” the inhalants often used during sexual activity that he believes suppress the immune system and contribute to AIDS. Other papers involve the Tenderloin district hotel he operated for AIDS patients.

“We had a sense of historical energy during the ‘70s and ‘80s, and a lot of what we were doing was pioneer work,” Wilson said in an interview. “I think it’s interesting for people to see what we did, how we did it.”

Dr. Marcus Conant, a dermatologist who was among the pioneers in treating AIDS patients, gave a lot of his papers in 1998 to UC San Francisco, where he taught. The library started an AIDS library collection 20 years ago.

Some of its oldest documents, including Conant’s clinical notes and his requests for research funding, helped Randy Shilts write “And the Band Played On,” the 1987 book considered the seminal exploration of AIDS’ early years and society’s fumbling responses. Shilts died of AIDS at 42 in 1994.

But now, as Conant sees new cases of HIV infection and AIDS, he questions whether the public and governments are heeding the archives’ history lessons. “I’m not sure we learned anything,” he said. “When I donated that material, I was probably a lot less skeptical than I am today.”

Scholars, however, insist the archives -- along with similar collections at public libraries in New York and San Francisco -- will be invaluable as the epidemic enters its second quarter-century. For example, researchers are looking into such topics as the role of religion in the crisis.

Richard McKay, a history doctoral student at the University of Oxford in England, recently spent about three weeks exploring the AIDS archives in Los Angeles and San Francisco. He is working on a dissertation about the emergence of the now mostly discredited concept of a “patient zero” who was a central disseminator of the disease.

(In its most controversial sections, Shilts’ book 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.”

Among the historical society’s holdings are detailed diaries kept by James Ritter of Monterey from 1989 to 1994. In each annual volume, he listed all his friends who died of AIDS that year; there were 20 names in 1994, the year before Ritter died at 35. His red-bound journals show a man who was busy volunteering to help others while trying to keep up his own health and ties to friends and family.

At one point, he writes from his hospital bed about his worries that his cat would miss its flea bath and then muses about his own pain and beliefs: “It’s getting harder and harder. . . . Sometimes I wonder if I will ever feel good again. I hope so. Thank you Lord, guard and bless me. Be with me. Amen.”

larry.gordon@latimes.com

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AIDS archives

Online summaries of the three AIDS archives are, or soon will be, available at the Online Archive of California at www.oac.cdlib.org.

For more information on the individual archives, contact:

www.onearchives.org or (213) 741-0094

www.glbthistory.org or (415) 777-5455

www.library.ucsf.edu/collres/archives/ or (415) 476-8112