AEGiS-BAR: Accessing HIV information on the Internet Bay Area ReporterImportant note: Information in this article was accurate in 1999. The state of the art may have changed since the publication date.
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Accessing HIV information on the Internet

The Bay Area Reporter - March 7, 1999
Jeff Gustavson, ACT UP/Golden Gate Writers Pool

The Internet has proven to be a great democratizing force when it comes to HIV information. Since the earliest days of the AIDS crisis, people with HIV have struggled to get as much information as they could, often winding up knowing as much as their doctor (if not, occasionally, more). Unfortunately, the definitive final chapters on HIV have yet to be written.

As with all information, quantity does not always equal quality. The best sites for HIV information are continually updated, since the field of HIV changes so rapidly. Today's hearsay is tomorrow's gospel and vice versa, a cautionary shadow to those who would remain closed to revising opinion despite rigorous evidence. Searchability of a given site is also useful, but if never actually tested by the website's designers can be frustrating for the visitor. What follows are the addresses of some of the best sites, and a brief review of each.

http://hivinsite.ucsf.edu

This site contains a wealth of information across a broad range of understanding - from the most elementary questions of transmission to a map of the viral genome, as well as a virtual textbook on AIDS, the AIDS Knowledge Base. This online textbook devotes sections to basic science, legal issues around HIV, epidemiology, and clinical management. HIV Insite also devotes a fair amount of space to the paramount social issues of the epidemic. On the down side, the search function will return erroneous clinical trials eligibility information.

http://www.projinf.org

Some of the best people in town are at Project Inform. From tips on how to spot AIDS fraud to an outstanding opinion piece on clinical trial design this site can put the crux of the matter into plain English better than anyone. Nevertheless, it has flaws. The Antiviral Treatment information incorrectly listed efavirenz/Sustiva and abacavir/Ziagen as still being evaluated in clinical trials, even though the FDA granted them accelerated approval - a fact that was reported correctly both in the What's New? area of the site and in their archive of PI Perspective.

http://www.aegis.com

This site bills itself as the "largest AIDS/HIV knowledge base in the world," with over 700,000 indexed documents. Started and largely run by a Roman Catholic nun, Sister Mary Elizabeth, this comprehensive site has everything from a law library to an e-mail list to which anyone may subscribe free of charge.

http://www.healthcg.com/hiv

The Healthcare Communications Group runs this site, which maintains state-of-the-art current medical information. Although aimed towards healthcare providers, anyone can find summaries from all the latest conferences without spending the airfare or registration fee. One disappointment, however, is clicking on their "Ask the Experts" hyperlink - only to be greeted by a message promising its imminent coming.

http://www.critpath.org

Perhaps the ultimate in empowerment, this Philadelphia-based website was founded by and for people with AIDS. It has information on complementary therapies for HIV and hosts web pages for over 80 smaller community-based organizations, including such seminal activist groups as ACT UP/New York, and many links to other sites on the web.

http://www.hopkins-AIDS.edu

This site is run by the Johns Hopkins University medical school and is aimed at giving both practitioners and people with HIV a forum to submit questions, which are answered and then archived after 15 days. One of the best things about this site is it has an online, often updated, version of renowned physician John G. Bartlett's book, The Medical Management of HIV Infection. Although densely written, it is not insurmountable and very detailed.

Keep two things in mind when using the Internet: since the field of HIV and AIDS makes all data time-sensitive it is important to be aware of whether the information you're reading is current, and - more important - something isn't necessarily true just because it's out there.


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Copyright © 1999 - The Bay Area Reporter. Reproduction of this article (other than one copy for personal reference) must be cleared through the The Bay Area Reporter.

AEGiS is a 501(c)3, not-for-profit, tax-exempt, educational corporation. AEGiS is made possible through unrestricted funding from Broadway Cares/Equity Fights AIDS, Elton John AIDS Foundation, the National Library of Medicine, Pacific Life Foundation and donations from users like you.

Always watch for outdated information. This article first appeared in 1999. This material is designed to support, not replace, the relationship that exists between you and your doctor.

AEGiS presents published material, reprinted with permission and neither endorses nor opposes any material. All information contained on this website, including information relating to health conditions, products, and treatments, is for informational purposes only. It is often presented in summary or aggregate form. It is not meant to be a substitute for the advice provided by your own physician or other medical professionals. Always discuss treatment options with a doctor who specializes in treating HIV.

Copyright ©1980, 1999. AEGiS. All materials appearing on AEGiS are protected by copyright as a collective work or compilation under U.S. copyright and other laws and are the property of AEGiS, or the party credited as the provider of the content. .