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Photo by Jack GouldIf it wasn't for the gallbladder and the cows, Sister Mary Elizabeth might never have started the AIDS Education Global Information Service (AEGIS). The American Catholic nun runs "the largest HIV/AIDS Web site in the world" (www.aegis.com) from a room in her parents' San Juan Capistrano home. Founded as a bulletin-board service (BBS) in the mid-1980s by UC Irvine student Jamie Jemison, AEGIS now attracts 25 million hits per month. It has won numerous awards, including the American Medical Association's Best of the Web. Sister Mary Elizabeth says it's under consideration for a role in the United Nations Educational, Scientific and Cultural Organization's Memory of the World project to preserve human knowledge about HIV and AIDS. It receives thousands of dollars in funding from Roxane Laboratories and the National Library of Medicine. It has helped countless people with AIDS (PWAs) get the information they need to deal with their disease and make informed decisions about treatment.
But it all started with the gallbladder and the cows.
In 1985, Sister Mary Elizabeth had surgery to remove her gallbladder, and as she was lying in an Anaheim hospital bed with both of her arms hooked to IVs, a pillow fell over her face. She asked a nurse to help her get it off, and the nurse refused to come near her, saying, "I've dealt with AIDS patients before."
"I didn't have AIDS or HIV, but having a nurse tell you that when you're feeling so vulnerable really turned me on to some of the problems PWAs were facing in getting treatment," Sister Mary Elizabeth said.
Then, in 1990, came the cows. "Our community had inherited a herd of cows in Missouri, so I went off to Missouri to herd cows," she said. "When I got there, I found out the cows had a rather large financial lien against them. There was no way for me to stay there and take care of them, so we got rid of them. But while I was there, I met a couple of PWAs who were really isolated. The nearest major medical center was 90 miles away, and everyone had party lines, so they were very worried that people would find out they were HIV-positive. It was a very rural, conservative community. A BBS seemed the way to go."
Back in California, Sister Mary Elizabeth started her own BBS for the HIV-positive and PWAs, and the following year, she hooked up with Jemison, who gave her the BBS he had built without much success. "He was about five years ahead of his time," Sister Mary Elizabeth said. "Modem cost was so prohibitive then. He ran it out of UCI for about a year and a half, but he couldn't get enough interest going locally."
But in the '90s, technology caught up with the BBS, and AEGIS finally took off. It operated first as a BBS and moved to the Internet in 1996. Sister Mary Elizabeth now spends her days in a room, surrounded by steel racks holding eight computers. She runs the site largely on her own, with help from several volunteer programmers who pitch in as needed.
Sister Mary Elizabeth's computer résumé begins with her hitch in the Navy-where she served for 17 years-when she taught electronics as part of anti-sub-warfare instruction. In 1988, she made her vows as an Episcopalian nun as part of the order of Saint Elizabeth of Hungary. The order itself is a one-woman show, too; the other two founding members left after a year, and last year, Sister Mary Elizabeth changed affiliation to the American Catholic Church, an organization of independent Catholic churches.
"I decided that rather than going around blowing up the world, it was better to try to help people," she said dryly of her decision to go from chief petty officer to nun. (It may be worth noting that Aegis is also the name of one of the Navy's most powerful cruise missiles.)
And her site unquestionably helps people. Just ask James Maytum. Diagnosed as HIV-positive in February 1993, he was close to death by Christmas 1995. "That year's family Christmas dinner was supposed to have been my last," he said. "I was on tube feeding, unable to move on my own, and was literally carried in the arms of my family to sit with them that evening."
Treatment with protease inhibitors briefly revived him, but by the end of 1996, his only option was an experimental treatment. Trying to decide whether to go ahead with the treatment, he did some research online and discovered AEGIS' astonishing array of information, including medical journals with the results of studies of the treatment his doctor was proposing. "My time had run out, and I needed to make a decision," Maytum said. "I used the information that only AEGIS had available and decided to go ahead with the experimental protocol. The results are that I am still alive today, enjoying a far better quality of life than I have had since 1993. And all thanks to the decision I made based on the information I received from AEGIS."
The sheer volume of information AEGIS has available for the HIV-positive and PWAs is astonishing. It posts daily updates on the latest news about the disease, offers detailed information on various drugs and other treatments, carries articles from dense medical journals and everyday newspapers alike, includes the full text of relevant court cases and judges' opinions, and so much more there isn't room to list it.