The Times Mirror Company; Los Angeles Times - April 18, 1994, Monday, Orange County Edition, SECTION: METRO; PAGE: B-1
Leslie Berkman; Times Staff Writer

"People need information to take care of themselves," said Sister Mary, who founded her electronic bulletin board in 1990 to provide a free service for people who are isolated by their disease and cannot afford to access for-profit computer information networks.

The bulletin board, with 144,000 electronic files that include all the AIDS-related contents of the Washington-based National Library of Medicine and the Atlanta-based Centers for Disease Control, is considered one of the most comprehensive depositories of AIDS information in the world.

Moreover, it is the hub of a North American network called AIDS Education General Information System, or AEGIS, sending information electronically to 100 other AIDS bulletin boards scattered throughout the United States and Canada. And it shares data daily with overseas AIDS computer networks serving Europe, Asia, Africa and Australia.

While there are other AIDS databanks, those who use Sister Mary's system say it is extraordinary because it is free, easy to use and extremely comprehensive.

The San Juan Capistrano system's four telephone lines operate around the clock, seven days a week, fielding 50 to 100 calls daily. Its 2,000 registered users include people afflicted with acquired immune deficiency syndrome, as well as scientists, physicians and officials of federal organizations such as the Veterans Administration and the Office of National AIDS Policy Coordination.

"I use it to keep up with what is going on in the world," said Nancy Hazleton, the Office of National AIDS Policy Coordination's global coordinator. "If I need information about what is happening in Thailand, I can shoot a message through the network system's e-mail."

Hazleton is not alone in relying on the system's bulletin boards. Sister Mary, who is a computer expert, specifically designed it so people with AIDS could, by signing on by name or anonymously, seek advice, talk with AIDS patients and advocates worldwide, or just eavesdrop to ease their loneliness.

On a recent day last week, Robin of San Francisco asked for information on what to do about night sweats and learned from Kevin of British Columbia, Canada, that using bedsheets woven with natural fibers such as cotton and silk is helpful.

Doug Segur is a former bartender with AIDS who taps into the databank and dialogue to supplement the AIDS electronic bulletin board he operates in Pittsburgh, Pa. "It is nice to hobnob with (people with AIDS), people who care and have an understanding of what you are going through," Segur said.

Billi Goldberg, a retired civil engineer and AIDS activist in San Francisco, said she regularly feeds research information into AEGIS. "Instead of being in a vacuum," she said, "you have people talking to people. We have had a lot of heated debates about AZT and alternative treatments like ozone and DNCB, herbs and vitamins."

When Tomas Fabregas learned a few months ago that a virus associated with AIDS was attacking his eyes, he signed on to the San Juan Capistrano bulletin board from his San Francisco home. In doing so, he found out that a Bay Area hospital was experimenting with a promising treatment for the infection, which causes blindness.

The 35-year-old Fabregas joined the hospital experiment and had time-release drugs surgically implanted in both eyes. The virus, called cytomegalovirus retinitis, has been suppressed, saving his eyesight.

"It was so empowering to find through a phone call this mass of information," he said, adding that the computer bulletin boards and database enable him to work with his own doctor in finding life-extending treatments.

Sometimes, users of the system say, the network posts important new medical information before most physicians learn about it.

"Physicians today don't have the time to read everything that comes across their desk because of the rapid changes taking place in treatment techniques," Sister Mary said.

One patient discovered that he was suffering a harmful side effect from mixing drugs when he read a report that AEGIS had just copied from the National Library of Medicine. As it turned out, the report had not yet been published in the professional reference book that his doctor used.

At the helm of the information network is Sister Mary, who dedicates her days to exchanging and organizing data.

The soft-spoken woman, whose office walls are covered with community service awards and dominated by a crucifix, said she wants to help AIDS patients be healthier and teach everyone how to stop the spread of the incurable and deadly disease.

"The system here is the largest (AIDS) database in the world," she said, patting two powerful computers she keeps in her modest mobile home, which doubles as her office.

Sister Mary, 55, said she launched the computer information service in 1990 after a trip to rural Missouri, where she saw those with AIDS who were geographically isolated. They were unable to talk about their disease on the telephone for fear that they would be overheard on party lines and ostracized in their communities.

"This is what God wanted me to do," she said about her work in creating an AIDS information network.

To pay the $20,000 a year to maintain her computer service without charging any user fees, she accepts contributions and takes part-time jobs as a computer consultant. The mobile home where she lives and works belongs to her parents and she observes a vow of poverty.

She is determined to keep her service free, because people with AIDS who need the information are often financially devastated by medical bills, she said.

While Sister Mary makes her databank available to the 100 other electronic bulletin boards in the AEGIS system, she said many people dial into her system directly because it contains more extensive research material.

In addition to her work on the computer network, she has also lobbied to make government information free to the AIDS community.

Outraged that the National Library of Medicine required a hefty fee to access its AIDS database, she enlisted the help of Vice President Al Gore, and members of her network sent protest letters to Kristine Gebbie, the national AIDS policy coordinator. As a result, the medical library in January dropped public charges for AIDS files.

Sister Mary believes her computer bank would not be necessary if the federal government did a better job of collecting and disseminating AIDS information. Federal agencies that have electronic bulletin boards, she said, have outdated and incomplete AIDS data or are technically difficult to access.

"The government has the money and has made a commitment to the information highway, but they have not made the same commitment to AIDS," she said.

And while she finds many rewards in her work, Sister Mary conceded that her job carries a depressing burden.

"The difficult part for me is you get to know the people," she said. "You get used to their keystrokes and the personality that comes through. You chat with them and then one day they are no longer there.

"The happiest day of my life will be when I can shut the system down and say it is no longer needed."

GRAPHIC: PHOTO: COLOR, Sister Mary Elizabeth, who founded her electronic bulletin board to provide AIDS information in 1990, says: "People need information to take care of themselves." The network offers the latest data on AIDS. PHOTO: (A2) AIDS Information On-Line: Computer users may glean extensive, up-to-date information on AIDS for free from an electronic bulletin board in San Juan Capistrano. Its founder, Sister Mary Elizabeth, above, dedicates her days to exchanging and organizing information for the databank. PHOTOGRAPHER: BOB GRIESER / Los Angeles Times

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