AIDS Computer Bulletin Boards Gaining Popularity
To: Cheetah
From: Crazy LadyCheetah. I'm so glad to get my first mail from a good friend. I'm sorry S---- has MAI, but now that it is diagnosed, maybe the doctors can get it under control. M---- is having problems with Hairy Cell Leukoplakia.
November 1993: Welcome to the support forum of the Computerized AIDS Ministries Network, one of the newest and most successful outreach programs of The United Methodist Church. Only three months after it went on-line at the church's New York City headquarters, the toll-free electronic AIDS bulletin board has more than 250 users whose hunger for up-to-date information and peer support keeps the lines open 22 hours a day.
"We are tripling what we thought we would be spending at this time," says Charles Carnahan, executive director of the church's HIV/AIDS ministries. "We're struggling with being too successful."
The church's electronic AIDS bulletin board is only one of more than 100 similar services that have sprouted up since computer network FidoNet began its HIV/AIDS information bulletin board service in 1985. The electronic exchange of information is particularly well-suited to the AIDS field, where treatment is rapidly changing, and anonymity is valued.
People disabled by AIDS can find support simply by owning a computer and a modem. Researches can instantaneously download scientific information from bulletin boards like the Houston AIDS Information BBS, set up by a Houston physician specializing in AIDS, offers health care professionals articles from national AIDS-related newsletters and polls results on their preferences for treatments.
The United Methodist Church project grew out of the denomination's 1988 call for an interagency AIDS task force that would improve the church's response to AIDS. Although several other denominations have previously created AIDS bulletin boards, two recently shut down, leaving only ... EcuNet, Carnahan says.
The United Methodist Church wants to expand on EcuNet's services by providing a more extensive library for materials that range from the epidemic's latest statistics to the most current treatment for the virus. Information from the National AIDS Clearinghouse in Washington, DC, also can be downloaded, as well as recent focus papers on AIDS issues put out by the church, one of the more recent being on women and AIDS.
The bulletin board also has two support forums and plans to set up a memorial forum-- a kind of electronic quilt where callers can leave messages about loved ones. But expansion will depend on funding, and already it appears that telephone line charges alone will exceed the $75,000 annual budget for the project, Carnahan says.
Parents Use Service
The church's top priority, however, is providing a free service to people who cannot afford the dozens of computerized AIDS information services nationwide. Callers hail from as far away as Hawaii, says Carnahan.... Many of the callers are the parents of people with AIDS who seek comfort, as well as information about their sick children.
"Bill is so right," types in a caller who signs on as Grandma Connie. "We will never be the same. They say it gets better, but I can't see how it gets better. It just must get different because my heart is broken."
"I am terrified of losing my son," writes another mother. "I realize I'm no different from other mothers who lose children, but maybe I'm not as strong as I will become. Thank you for the forum."
The bulletin board also has a prayer forum, and even though it requests denominational information when callers log on, its primary interest is not in recruiting people to the church, Carnahan says.
"We are simply trying to embody the spirit and belief that people living with HIV disease are of infinite worth in the Creator's eyes, and as people of faith we are called to respond to people who are hurting," says Carnahan.
Keeping theological concerns separate from medical issues is not easy on a bulletin board service. The electronic interactions, however, are monitored by the system operator. Someone who logs on to the support forum and wants to discuss homosexuality or "throw theological hand grenades" is sent to another forum reserved for those issues, he says. So far, the system has received only one complaint from a caller about a caller whose "pastoral counseling" was not appropriate, he adds.
Episcopal Nun Starts Service
More than a few callers have found the openness and safety of the church's bulletin board a pleasant contrast to their church experiences, and have re-engaged in their "spiritual journey." he says. The service library includes focus papers that highlight the church's position on AIDS, as well as other inspirational material.
Interest in the bulletin board has come largely by word of mouth and from news items in the denomination's publications. But its growth is not unique. Three years ago, Sister Mary Elizabeth, an Episcopal nun, and two bulletin board operators started a user-free bulletin board in San Juan Capistrano, CA. The response was so strong that a year later they set up the AIDS Education and General Information Service (AEGIS), a network that now feeds bulletin boards in 26 states in this country and has its 25,000 files picked up and distributed by other networks to 24 countries.
"As soon as the word got out that we would be passing out the information, everyone wanted to join," says Sister Mary Elizabeth, whose service is funded by several religious organizations.
Her inspiration for starting the bulletin board service came from her work with people with AIDS in a small Missouri town. With only one doctor visiting one day a week and the closest AIDS clinic more than 75 miles away, information was hard to come by, she says. Adding to the problem was the fact that most residents were connected to party line telephones.
"I came back to California and thought, there must be a better way -- and electronic bulletin boards were it," she says, adding that she gained an electronics background from her military experience prior to becoming a nun.
The only requirements for joining AEGIS are that the information is freely accessed and that the bulletin boards provide anonymous log-on names. Much of AEGIS' information comes from the federal government's AIDS bulletin board services, major newspapers, and several newsletters that contribute their issues. The National Library of Medicine in Bethesda, MD, also has agreed to donate its information to AEGIS rather than charge its usual fee, she adds.
Working out of a mobile home bedroom converted into a computer center, Sister Mary Elizabeth and an assistant sort, compile, and compress the new information that is sent daily to the member bulletin boards. In addition to a daily news summary, the network provides several dialogue forums, including one specifically for women and AIDS.
The cost of running the network is about $9,000 a year. The only cost to people using the bulletin boards is the expense of downloading the information packages. So far she has been unable to find funding that would allow her to offer members a toll-free line to access the bulletin board.
Credits
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"Unique AIDS Programs" from AIDS ALERT is reproduced with permission of American Health Consultants, Inc., Atlanta, GA copyright © 1993. Contact American Health Consultants for further reproduction rights.
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