From: Billi Goldberg <bigoldberg@igc.apc.org>
Subject: The New Activism
Note: Copyright 1992, Dan R. Greening. Non-commercial reproduction allowed.
Archive-Number: 6695
Organization: unspecified
Date: Wed, 30 Dec 92 18:45:05 PST

The following article was printed in the San Francisco Sentinel on 
Thursday, December 31, 1992. It is being posted with the permission of 
the author, Charles R. Caulfield.
************************************************************************
             1992 AND THE EMERGENCE OF THE NEW ACTIVISM
                      by Charles R. Caulfield

    Two of the most reputable leaders in the AIDS medical community 
admitted this year for the first time the futility of the current regime 
of antiviral treatments for HIV. Paul Volberding and Donald Abrams, both 
physician pioneers in antiviral drug therapy for HIV, wrote editorials 
in BETA (the Bulletin of Experimental Treatments for AIDS) that although 
the currently used drug therapies, AZT, ddI, ddC may show a transient 
increase in CD4s, they do not extend survival time, but merely delay the 
onset of symptoms. Abrams quotedthe famous study, "AZT: Five Years 
Later", in which the authors (McLeod and Hammer) state that 'the effects 
of early therapy on survival and the optimal time to initiate therapy 
remain controversial", even for "the cornerstone of antiretroviral 
therapy." (namely AZT). At this Abrams lamented, "we really must face 
the critical issue and not pooh-pooh survival in favor of modest 
transient increases in CD4 counts, or even significantly decreased short 
term disease progression."

    The 8th International Conference on AIDS clearly demonstrated that 
previously promising new therapies had shown no efficacy, and that there 
existed no meaningful new antiviral treatments in development. One of 
the most noteworthy components of the Conference was the single didactic 
module on alternative treatments, highlighting nutrition, Chinese 
Medicine, DNCB and potential treatments from outside the mainstream.

    This year saw the virtual collapse of Project Inform, cheerleader 
and pimp for the drug industry's new toxic "drug of the week".  Act-Up 
has been reduced to approximately 30 ineffectual individuals, down from 
what was once a membership of hundreds of effective activists. 

    Abrams in his essay states what few doctors dare to admit publicly: 
"The ultimate progression of HIV disease, unfortunately, continues to be 
towards death as an endpoint." This despite all the billions spent on 
drug research.

    In calling to the public eye these discrepancies between theory and 
practice, a highly evolved meta-network of computer Bulletin Boards, 
triggered by individuals researching the science which is not being 
discussed by conventional university researchers who fiercely guard 
their own prurient agenda and research dollars. Joining these 
individuals in their electronic communications are clinicians and 
scientists who see all too clearly the futility of the mainstream 
treatments options. The evolution of such a complex system of 
instantaneous communication has allowed a worldwide dialogue which has 
clearly begun to drive the agenda of the AIDS treatment development, 
making  full use of what is now known in the fields of Immunology and 
other relevant disciplines in the design of treatments for AIDS. 

   The Establishment's failure to cure this disease has largely been a 
by-product of institutional territoriality between virologists, 
molecular biologists and oncologists. The computerized system of 
instantaneous access to information now allows specialists to share with 
and learn from other clinicians, the patients themselves and the new 
"lay learned" - individuals, who dissatisfied with the current lack of 
progress, have taken it upon themselves to learn the basic science and 
engage with full credibility in the dialogue surrounding the formulation 
of therapies for AIDS.

    Some of these computer bulletin boards engender a dialogue between 
scientists and activists in the U.S., Brazil, The U.K., South Africa, 
and all parts of the U.S. One such service is the HIV/AIDS BBS, operated 
by Sister Mary Elizabeth, a nun belonging to the order of the Sisters of 
Elizabeth of Hungary in San Juan Capistrano, CA. Their bulletin board 
service makes available the texts of all primary AIDS publications, 
abstracts of Medical Journal references on AIDS, FDA  reports, and the 
Centers for Disease Control daily summaries. The AEGIS (AIDS Education 
and General Information Service ) AIDS Dialogue, AEGIS AIDS Data, 
Fidonet International AIDS /ARC, and USENET sci.med.aids are all 
international vehicles for interactive dialogue which allows a give and 
take discussion and debate on all subjects pertaining to AIDS treatment. 
Rather than waiting for the lengthy process of medical journal 
publication, professionals have available to them instantaneous peer 
review of their theories and treatment regimens by tens of thousands of 
interdisciplinary practitioners, as well as by knowledgeable PWAs. 

    Membership in International Global Communications in San Francisco 
allows access to sci.med.aids for a nominal fee. All other bulletin 
board services discussed here offer membership free of charge, which 
includes the ability to post and receive questions, answers and 
hypotheses.

    This rapid exchange of important information is in stark contrast to 
what is available to old regime treatment advocates, who had to rely on 
"snail-mail", which is both time consuming and expensive, and possibly 
outdated by the time it is received by the subscriber.  The one 
exception to this is AIDS Treatment News, which has always freely and 
readily allowed computer bulletin board access. 

    Many scientists, doctors and researchers, due to abject computer 
illiteracy,  are not utilizing this method of rapid communication and 
are being left behind, giving computer savvy activists a pronounced 
advantage in the acquisition of the most up-to-date information, and the 
dialogue needed to make heads or tails of it.

    In the development of this network of information exchange, 
institutional and disciplinary boundaries are being circumvented, 
allowing for the free exchange of information which will be so vital to 
the cure for this disease. For information on HIV/AIDS Info BBS, or 
other AEGIS Network Affiliates, one can contact Sisters of St. Elizabeth 
of Hungary, Attn: AIDS/HIV Info BBS, P.O. Box 184, San Juan Capistrano, 
CA 92693-0184. (714) 248-2836.

    In 1992 the Sentinel has stood well above the middle of the road 
stance of most of the popular gay press, allowing for airing of 
alternative theories on the origin and treatment of AIDS.  We will 
continue to offer throughout the coming year thoroughly researched, 
credible data on AIDS treatments, to allow our readers to have the 
information which is critical to making informed treatment choices. 
Happy New Year. May 1993 be the year of the Cure.  
Newsgroups: sci.med.aids