Access is an AIDS, Inc. buzzword. You see it sprinkled on annual reports, laced across fundraising letters and peppered throughout brochures: Access to health care, to drugs, to housing, to information, you name it.
But what about access to the Internet? According to many observers, AIDS service organizations (ASOs) are doing a poor job of linking their clients to the trove of resources available online. Moreover, they say, web access is far less likely among groups that serve primarily poorer, minority populations—the very communities most lacking in computers.
“Many ASOs aren’t computer literate,” said Sister Mary Elizabeth, webmistress at AEGIS. Julie Davids, Critical Path AIDS Project interim director, explained it this way: “A couple of people have taken the footpath, but the gulf is not being bridged.”
AEGIS and Critical Path (see below) were among the first sites to envision the Internet as a vital information stream, not just for HIVers, but for all health care consumers. AEGIS was founded in 1986, eons before the World Wide Web became worldwide words. Under the tutelage of the late Kiyoshi Kuromiya, Critical Path began providing free Internet access to HIVers as early as 1995.
Some ASOs, of course, have been quick to recognize the web’s significance. The Boston Living Center built a full-service computer room four years ago that’s used by clients to comb through the tangle of new treatments and programs. “If it weren’t for their Internet service, I wouldn’t have the housing I have today,” said Adam St. Jacques, a 33-year-old HIVer.
But for every ASO that offers clients Internet access, there are many more that do not. “The only person here with access is the accountant,” said Patsy Cruz, an administrator at Alianza Dominicana/HOPE, a Harlem-based center that serves the neighborhood’s African-American and Latino communities. Even Gay Men’s Health Crisis (GMHC), the nation’s first ASO, trails behind. It has a few terminals in the medical library, but neither publicizes them nor trains clients on how to use them. And its website (www.gmhc.org) offers only “very basic information,” GMHC communications director Marty Algaze said.
“It’s not just about providing PCs,” said Gale Dutcher, a coordinator at the National Library of Medicine (NLM), a branch of the National Institutes of Health (www.nlm.nih.gov). “It’s also providing training—not just once, but continuously.” The library’s site points to a 71-page NLM report on AIDS that concludes: “Despite the tremendous potential of electronic information resources, many members of the affected community do not have access to them.” The document is dated 1993.
John La Bella, a Net consultant and founder of HIV InfoWeb (www.infoweb.org), said the problem persists because of a cultural gap. “Social workers in general are overworked and tend to be technophobic. They don’t use it themselves so they don’t mention it to clients.” Then there is the dollar divide, which underscores why relatively well-endowed groups like AIDS Project Los Angeles (www.apla.org) are web-ready-willing-and-able, while smaller ASOs struggle to provide day-to-day services.
To span these gaps, the NLM has awarded $500,000 each year to about 20 ASOs nationwide. One success story is the Houston AIDS Information Link (www.hailinfo.org), a partnership started in 1991 by 15 local groups, including hospitals and libraries, all of which coordinate use of public terminals with the site.
But progress marches onward. After years of discussion, the Dallas AIDS Resource Center entered cyberspace in February with a three-prong approach: computers, a customized site and training. “All the information is out there,” said Craig Hayworth, the center’s info manager. “This is about providing access.” There’s that A-word again.