rock%lighthouse%pyrdc%wubios@uunet.UU.NET (Roger Rock Rosner) (10/29/89)
***************************************************************************
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.phil@wubios.WUstl.EDU (J. Philip Miller) (11/09/89)
Forwarded message:
>From pyrdc!lighthouse!rock@uunet.UU.NET Tue Oct 24 19:13:18 1989
Date: Tue, 24 Oct 89 18:55:54 GMT-0500
From: pyrdc!lighthouse!rock@uunet.UU.NET (Roger Rock Rosner)
Message-Id: <8910242355.AA01241@ lighthouse >
To: phil@wubios, ddodell@stjhmc.fidonet.org
Subject: Washington HIV News: V1N2, 3/3
***************************************************************************
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.
--
J. Philip Miller, Professor, Division of Biostatistics, Box 8067
Washington University Medical School, St. Louis MO 63110
phil@wubios.WUstl.edu - Internet (314) 362-3617 phil@wubios.wustl - bitnet
uunet!wucs1!wubios!phil - UUCP C90562JM@WUVMD - alternate bitnet