Path: utzoo!utgpu!jarvis.csri.toronto.edu!mailrus!uwm.edu!cs.utexas.edu!ginosko!samsung!usc!ucla-cs!rock%lighthouse%pyrdc%wubios@uunet.UU.NET From: rock%lighthouse%pyrdc%wubios@uunet.UU.NET (Roger Rock Rosner) Newsgroups: sci.med.aids Subject: Washington HIV News: V1N2, 3/3 Message-ID: <28608@shemp.CS.UCLA.EDU> Date: 29 Oct 89 01:57:33 GMT Sender: news@CS.UCLA.EDU Lines: 179 Approved: aids@cs.ucla.edu Archive-number: 1416 *************************************************************************** DEPARTMENTS - Table of Contents February 1989 - Vol 1, No 2 Opening - Taking care of ourselves Distribution Staff *************************************************************************** TAKING CARE OF OURSELVES A summary released by the National Institutes of Health, National Institute of Allergy and Infectious Diseases, AIDS Program Office showed that as of December 30, 1988, there were 5,980 people enrolled in NIH-sponsored AIDS- related protocols. As of January 2, 1989, the Centers for Disease Control reported that there were 82,764 persons diagnosed with AIDS in the United States, of which 46,344, or 56 percent, were dead. Forty-two percent of the AIDS cases were among racial minorities. While there are no accurate statistics about the number of people who are HIV infected, current estimates range as high as two million people. The number of people who are actually aware of their HIV-positive status is unknown, but it must easily range in the hundreds of thousands. Balanced against these statistics are the facts that many of the early protocols excluded significant portions of the HIV-infected population (like women and IV-drug users), and that for people outside of the major metropolitan areas that have research institutions conducting studies, there was simply no way to participate because of the geographic problems involved. This is slowly changing. The more inclusive criteria of protocols being developed now, and the soon-to-be-implemented community- based research centers will provide access to people who have been excluded from the traditional academic/medical centers. Many people have opted for the "alternative" therapies, or just taking better care of their bodies by getting plenty of sleep, trying to reduce stress, and paying more attention to nutrition. Others are using crystals, guided meditation, creative visualization, and other techniques. As with any situation in life, there are advantages and disadvantages to participating in the research protocols run by the scientific and medical community. The advantages include having access to new forms of treatment that may not be accessible outside of these protocols; constant, careful monitoring of a person's health status by some of the most informed medical professionals; and getting free or low-cost health care that would be prohibitively expensive for most people. The disadvantages include putting faith in an often untried, experimental drug, and dealing with feeling like a human version of a laboratory guinea pig. Many people are prevented from pursuing experimental treatments (when the conventional ones have failed them) by their own fear. They may have a lurking suspicion that research protocols may prefer hard "body counts" to softer "indicative trends" in data. Many people may feel so overwhelmed at the prospect of going through the maze of the Clinical Center at NIH that they just shut down emotionally and give up. If you find your life ruled by fear, you can take positive steps to help counteract that fear: joining a support group of people who are in the same situation, and who can talk about the very situations you are afraid of can help de-mystify them, and remove some of the fear of the unknown. Having a support system that can provide someone to go with you when first screening for a protocol can be a lifesaver for your stress level. Being relaxed enough to really quiz the researchers about all your fears around a particular protocol can help allay those fears. The researchers try their best to explain the pros and cons of every protocol, but they cannot read minds, and you must voice your fears so the researchers can attempt to calm them. You must also ask for information so that the researchers can fill those needs. The fact remains that the only way researchers will get enough data about HIV to be able to treat its symptoms now, and eventually to defeat it, is through research of all types, and sharing information. This involves a two-way street: people who are HIV infected (and even some who aren't, who are needed for vaccine protocols) will have to take that leap of faith and work with the researchers, who for their part will have to act in a caring, compassionate manner, and demonstrate that this trust is not misplaced. It is not possible to give enough credit to those thousands of dedicated men and women, of all races, religions, and backgrounds, who have volunteered for one protocol after another, often to the brink of death, and beyond. In the tragedy of AIDS, these people are our unsung heroes, giving their time, energy, and often their lives to help conquer this disease which is a threat to us all. May the day come quickly when we can all sit back and breathe a sigh of relief at the welcome news that a way to beat AIDS has been discovered, and that the war is won. **************************************************************************** DISTRIBUTION Washington HIV News is published six times a year entirely by volunteers, and is distributed through the Whitman-Walker Clinic, and at several public locations, without charge. However, each issue of Washington HIV News costs about $1,100.00 to print, and is currently funded from private contributions and grants. (Donations are gratefully accepted.) Single copies of Washington HIV News are available on request; please call and leave a message at (202) 797-3590. To be on a regular mailing list, please fill out the form at the right. Because of the costs involved, a fee must be charged to everyone except PWAs/PWARCs. The subscription rate is $6.00/year ($1.00/issue); additional subscriptions are each $3.00/year ($0.50/issue). _____________________________________________________________________ Name _____________________________________________________________________ Institution (where applicable) _____________________________________________________________________ Address _____________________________________________________________________ City, State, and Zip One yearly subscription (6 issues) = $ 6.00 ____ additional subscriptions ($3.00 each) = ____________ Total (enclosed) $ ____________ Make checks payable to: Washington HIV News Return this form to: Washington HIV News c/o The Whitman-Walker Clinic 1407 "S" Street, N.W. Washington, DC 20009 **************************************************************************** \\\ //\\ /// \\\ ///\\\ /// Washington HIV News is endorsed by \\\////\\\\/// the Whitman-Walker Clinic, although \\// \\\// the content of this newsletter does \/ \\\ \/ //\\ /// not necessarily reflect the \\\ ///\\\ /// opinions of the Whitman-Walker \\\////\\\\/// Clinic. \\// \\\// \/ \/ Editor-in-chief . . . . . . . . . . . . . Andrew Coile Contributing Editor . . . . . . . . . . . Kate Parker Supervising Editor . . . . . . . . . . . Patt Hoffmann Assistant Editor . . . . . . . . . . . . Henry Trevathan, Jr. Contributors . . . . . . . . . . . . . . W. Howard Cyr Theresa Dyer All rights reserved. Although great steps have been taken in an attempt to insure the accuracy of all the information presented herein, the Washington HIV News, the staff that produces it, the Whitman-Walker Clinic, or the various institutions and personnel who provided us with information cannot be held responsible for any damages, direct or consequential, that arise either from the use of this material or due to any errors contained herein. The issues raised by the subject of pursuing treatment for HIV infection are not simple ones. EVERYONE CONSIDERING APPLYING FOR A PROTOCOL SHOULD FIRST DISCUSS POSSIBLE TREATMENTS AND PROTOCOLS, IN DETAIL, WITH HER/HER PRIMARY CARE PHYSICIAN. Together, the patient and physician can carefully review the different requirements presented for each protocol and make a decision. When applying for a protocol, the most important thing to do is to ASK QUESTIONS! This disease is so dynamic that protocols may change after press time from the information presented here. The only way to know the latest complete details is to ask questions. Most researchers do the best they can with the knowledge they have, but they are human. Patients must feel free to ask as many questions as they want to. The patient must be a willing and informed participant in any protocol. Above all, it's the patient's life, and that is who must deal with the consequences of medical decisions. EXTRA SPECIAL THANKS TO: MARGARET EASTER. Special thanks to: Larry Cohen and the volunteers who help in distribution. DEDICATED TO: LARRY EDWARDS, JIM AMADEI, PETER PENDOLINO, HAL FREEMAN, MAX ROBINSON. *************************************************************************** Copyright (C) 1988,1989 by Washington HIV News, all rights reserved. Permission is granted for non-commercial use only.