Important note: Information in this article was accurate in 1994. The state of the art may have changed since the publication date.
San Francisco Examiner, B-Pg. 1 - July 17, 1994
Lisa M. Krieger, Staff Writer
Fifty-year-old Sister Mary Elizabeth fought for the right to gather and publicize, for free, the gossip, trends and breaking scientific discoveries from thousands of AIDS research institutions and community groups.
First she tackled the National Library of Medicine, then the San Francisco AIDS Foundation. Now she's taking on AT&T and Pacific Bell.
"I was angry," said the soft spoken nun from the bedroom of her mobile home in San Juan Capistrano. "All I wanted was free access to information -- and permission to distribute it.
"For some people, that information could make the difference between life and death."
Her persistence has single-handedly created the largest electronic collection of AIDS information in the world, with 144,000 files on drugs and discoveries -- all accessible from a computer keyboard.
"I brought my laptop so I could call it up and do a search," said Tomás Fábregas, an AIDS patient from San Francisco who was hospitalized for treatment. "You can call up the entire contents of the National Library of Medicine using a keyword search. It's very easy to use."
A worldwide network
With the AIDS Education General Information System (AEGIS), Sister Mary Elizabeth links more than 100 computer bulletin boards from all over the world, disseminating information from rural Minnesota to urban Jakarta, Indonesia -- and everywhere in between.
It's a vast reference library, offering access to published research papers, community newsletters, pharmaceutical press releases, and reports from federal agencies such as the National Institutes of Health and the Centers for Disease Control and Prevention.
But it's also a cozy kaffeeklatsch where doctors and researchers talk about what's hot in their world long before it makes headlines.
In the privacy of their homes, AIDS patients and activists can seek and swap information, searching, perhaps, for some nugget of new information that will improve health.
The idea has met resistance from the AIDS establishments. For a year, the National Library of Medicine charged Mary Elizabeth $18 an hour to search its AIDS drug database, a bill that quickly added up to hundreds of dollars.
That changed after she discovered that government agencies were tying up her lines, downloading information for free instead of paying the National Library of Medicine.
She fired off a letter to Vice President Al Gore.
"This is ridiculous," she wrote. "I'm paying for this stuff, so they can get it for free . . . . The (National Library of Medicine) information belongs to us anyway -- it was purchased with our tax dollars -- and was being sold back to us."
Gore's office promised to resolve the problem. Almost immediately, she was granted a free "access code." Later, free access was granted to the general public.
The San Francisco AIDS Foundation refused for more than three years to grant permission for her to publish their $75- to $165-a-year publication called the Bulletin of Experimental Treatments for AIDS (BETA). When Mary Elizabeth added the publication, without permission, the AIDS Foundation obtained a cease-and-desist order.
Last month, BETA finally became available -- for free -- to the computerized public.
"Around the world, access to critical treatment information was being restricted by the very organization which has taken the responsibility -- and the grant money -- for providing it," said Fábregas, a former board member of the San Francisco AIDS Foundation.
Responds Ron Baker of BETA: "Formatting was a problem, due to charts, tablets and photographs. We are a staff of two people, who until recently lacked computer expertise. It was a question of being ignorant about the technology. Now, we're delighted that its happening."
Now she's going after AT&T and Pacific Bell. They've rebuffed her requests for a charity "800" number, which would enable patients to gain access to the network for free. She is also seeking a remote "call forwarding" line for AIDS hot spots such as San Francisco, so that patients could reach the network by dialing a local number.
Sister Mary Elizabeth, a former naval aviation electronics engineer, came up with the idea of an electronic clearinghouse for AIDS information while living on a cattle farm in the Ozark Mountains of Missouri.
In a town with more cows than people, there was virtually no AIDS information. One day a week, for four hours, a doctor visited the nearest town. The nearest hospital was 50 miles away. There also was little privacy. Residents shared a telephone party line. Two postal workers delivered all the mail along the region's rural routes.
"I met two people there who were desperate for information, but they couldn't mention the word," she recalls. "I realized that electronic bulletin boards were the answer. They'd have up-to-date information in seconds -- and it's private."
Sister Mary Elizabeth starts her day at 4 a.m. in a back bedroom with five computers. In the course of a day, the network takes 50 to 100 calls. One user has started taking AZT and worries about numbness in his toes. Another wanted to learn about experimental treatments for eye infection.
The computer service, which started in 1990, costs her $20,000 because there are no user fees. She supports it through contributions and part-time work as a computer consultant.
"The gamut of resources available on [AEGIS] is quite literally the best available anywhere in the world," said Carlton Hogan, training coordinator of the University of Minnesota's School of Public Health. "It is a touchstone of our community, and a precious resource that should be nurtured."
"It is a labor of love put together on a shoestring budget -- and possibly the most comprehensive HIV-specific database accessible in the world," Fábregas said.
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SIDEBAR
AIDS INFORMATION NETWORK
The AIDS Education General Information System is part of a worldwide network dedicated to free dissemination of AIDS information.
The users can exchange messages on many subjects and in several languages; read periodicals such as AIDS Treatment News, and gain access to official reports such as the AIDS Daily Summary from the U.S. Centers for Disease Control and Prevention.
Computer users with modems and access to the internet can browse files on the network in several ways:
- GOPHER: Using the "gopher" method, select gopher.hivnet.org
- TRANSFER: Using "file transfer protocol", select ftp.hivnet.org
- INFORMATION: For information on joining the message groups, or to learn more about the network, address electronic mail to info@hivnet.org
----------- Copyright (c) 1994 - San Francisco Examiner-Chronicle. Reproduced with Permission. Reproduction of this article (other than one copy for personal reference) must be cleared through the Permissions Desk, San Francisco Examiner, San Francisco, California.
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Copyright © 1994 - Reproduced courtesy of copyright owner - listed on source line.
AEGiS is a 501(c)3, not-for-profit, tax-exempt, educational corporation. AEGiS is made possible through unrestricted funding from Broadway Cares/Equity Fights AIDS, Elton John AIDS Foundation, the National Library of Medicine, Pacific Life Foundation and donations from users like you.
Always watch for outdated information. This article first appeared in 1994. This material is designed to support, not replace, the relationship that exists between you and your doctor.
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