Wing, Prayer Battle AIDS

AIDS activist and Broadway playwright Larry Kramer had spent the evening firing off questions to a website dedicated to AIDS information. After several hours, enlightened with the statistics he needed, he typed a final question.

“By the way, who are you?”

She was Sister Mary Elizabeth Clark of San Juan Capistrano, who in 1990 created what has become the largest free online information bank on HIV and AIDS in the world. The only resource larger is the U.S. National Library of Medicine, which offers some of its information on a website.

That late-evening exchange led to Clark’s receiving the Award of Courage from the American Foundation for AIDS Research, presented in June 2003 in New York City by a grateful Kramer, who’d become a daily devotee of the site. Three months later, Clark was in Chicago receiving the Human Rights Award from the International Assn. of Physicians in AIDS Care.

Today, after the accolades and effort, with the site at times exceeding 1 million users a month, Clark is preparing to turn over much of her work to a successor at the AIDS Education Global Information Service, or AEGiS. The transition comes as she and a paid staff of four settle in after moving in June to their first real office, four times the size of their former digs in Clark’s double-wide mobile home.

Clark, 66, is handing over her title as director of operations to Vanessa Robison, who joined the staff four years ago. For Clark, slowing down was inevitable after suffering a heart attack and losing sight in her left eye to a degenerative disease, which is slowly swallowing vision in the right.

Doctors give her about two more years of unhindered sight in that eye. After that, she said, she’ll still be active doing what she can.

“I’ll stay involved until the Lord calls me,” said Clark, a soft-spoken nun in the American Catholic Church, a small, independent offshoot of Roman Catholicism.

It’s tough for the rest of the staff to even consider AEGiS without Clark.

For much of the last 14 years, she toiled alone on the website, working 18-hour days from the living room of the mobile home she shared with her aging parents. It sits just across San Juan Creek from the new 1,700-square-foot office, which Clark’s 93-year-old father, Ed, happened upon and recommended for AEGiS just months before he died in August.

Robison, 32, a married mother of two, came aboard in April 2000. “I heard that someone needed help editing files,” she said, chuckling at the memory.

The news-filled website is now edited in five languages and updated hourly for an average of 900,000 users a month. It connects users worldwide to 1.2 million files through a network of seven computers in a separate room in the office.

It’s a big improvement, everyone agrees, over the days when the staff, working in Clark’s living room alongside 14 loudly humming computers, resorted to chatting by e-mail.

The staff worked overtime disseminating events and news coverage of World AIDS Day on Dec. 1. A flood of international news, including more than 100 articles from Agence France-Presse, had to be processed to appear on the website.

“We serve the world,” said Robison, who also handles physicians’ replies on the site’s popular “Ask the Doc” feature.

Other employees include assistants Lisa Hoskins, who answers the e-mail help line, and April Ele, in charge of posting AIDS-related news and abstracts from medical conferences.

After Clark, Betty Canepa has been there the longest, as the group’s full-time fundraiser and board president.

Canepa, who lives in Rancho Santa Margarita, said she was moved to help after her daughter lost four friends to AIDS. She began volunteering in 1998 and came on full time several years later, after her husband died.

“You can’t go through all that loss and not be affected,” she said. “We’re in this for the passion.”

Canepa’s job is to help find money for AEGiS’ $240,000 annual budget. Much of it is underwritten by German pharmaceutical giant Boehringer Ingleheim, which bought the service’s original benefactor, Roxane Laboratories of Columbus, Ohio.

Other donations include $50,000 from the Elton John AIDS Foundation, a recurring grant from the National Library of Medicine and, for the last three years, checks from the Bridgestone/Firestone Foundation. The foundation declined to provide information about what AEGiS assumes is an anonymous bequest.

Canepa said she had tried to rustle up more money locally. A fundraising letter to 230 corporations based in Orange County, asking for help on the office’s $2,185 monthly rent, generated not a single response, she said.

“We’ll keep trying,” she said. “I guess AIDS is not the ‘in’ thing anymore.”

The staff has a twofold mission: to disseminate information to anyone with a computer that can link to the Internet, and to chronicle how the AIDS pandemic has been addressed by governments and groups. That secondary mission led to AEGiS being nominated for U.N. honors in 1999, 2001 and 2003.

Testimonials for the nomination came from people such as Gary Gale, director of the National Pediatric AIDS Network, who used AEGiS to find medical information for his dying wife and their two HIV-infected children.

“We used to live in very rural areas where there was no other source of information besides AEGiS that I knew of,” he said. “AEGiS scans through all the journals and newswires that I don’t have time to, so I use the results of their efforts to pass on to the viewers of my [web]site.”

Kramer, in his remarks in New York, said he shared Clark’s dream that AEGiS become financially independent so it could hire her replacement when necessary.

“Sister Mary Elizabeth’s contribution to our community and to the fight against AIDS and to the world is nothing short of extraordinary,” he said. “She is miraculous. She is inspirational.”

It was faith that brought Clark to her mission. She took her vows as an Episcopal nun in 1988 without a clear vision for what she would do. Her vows were immediately controversial -- 13 years earlier, she’d undergone sex-change surgery. She later changed her affiliation to the American Catholic Church.

Visiting rural Missouri, she met an HIV-infected young man who wouldn’t call anyone for help on the town’s party phone line for fear of being overheard.

Inspired, Clark returned to Orange County and started a computer bulletin board with information on AIDS and HIV. Several months later, she took over the AEGiS name from Jamie Jemison, who was operating a similar service on a website sponsored by UC Irvine that was getting few visitors. In 1996, AEGiS moved to the Internet and finally took off.

The site is deliberately light on visual displays that would make it difficult to access for those with slower computers.

“We’ve gone the route of saying we want to be the Super Kmart so we can offer something for everybody,” Clark said. “I’d be much happier if we didn’t have anyone using the site on the basis that it wasn’t needed.”