From: "John S. James" <aidsnews@igc.apc.org>
Date: 21 Jan 94 19:52 PST
Subject: AIDS TREATMENT NEWS #191, January

AIDS TREATMENT NEWS Issue #191, January 21, 1994
   phone 800/TREAT-1-2, or 415/255-0588

Contents:

International Year of Decision: Interview with Paul Boneberg 
      of Global AIDS Action Network
Tenth International Conference on AIDS, Yokohama, 
      August 7-12, 1994: Abstract Submission; 
      Scholarship Information
New York City, Philadelphia, Pittsburgh, Sherman Oaks, 
      Stony Brook: Important Protease Trial Recruiting
Primary HIV Infection, and the Immune Response
Computer Access to Treatment Information


***** International Year of Decision: Interview with Paul 
      Boneberg of Global AIDS Action Network

by John S. James

1994 will be a watershed year for international AIDS policy. 
But U.S. AIDS organizations are unaware of what is happening, 
so they have had no voice in the decisions. To outline some 
of the major policy issues of 1994, we interviewed Paul 
Boneberg of Global AIDS Action Network (GAAN). GAAN is a new 
effort to help AIDS organizations, in the U.S. and other 
countries, advocate effectively with the AIDS programs of 
international agencies, and the international AIDS programs 
of their own governments.

GAAN founder Paul Boneberg also founded the San Francisco-
based Mobilization Against AIDS, and was its executive 
director for nine years; recently he left to start GAAN. He 
is interviewed by AIDS TREATMENT NEWS publisher John S. 
James, who recently joined GAAN's founding board. 

James: Why is 1994 an important year for global AIDS 
programs?

Boneberg: In 1994 some of the most significant policy and 
program developments on global AIDS issues will be decided. 
In the U.S., the entire foreign-assistance programs are being 
restructured. And within the United Nations, all the AIDS 
programs, both within the World Health Organization and 
beyond it, are being reorganized. Also, the highest level 
proposal for political action on AIDS has occurred in the 
recent French call for a world AIDS summit, to take place in 
Paris in June. And there are ongoing issues of human rights, 
and also of the involvement of non-governmental organizations 
(NGOs) in all these processes. 

1994 is the year in which AIDS activists can alter the 
structure of global AIDS programs, and influence global AIDS 
policy.

James: Nothing has appeared in the U.S. press about the U.N. 
reforms; the AIDS community and the general public have been 
in the dark. What have you learned so far? What kinds of 
outcomes are possible?

Boneberg: A consolidated program including the World Health 
Organization (WHO), UNICEF (United Nations Children's Fund), 
UNESCO (United Nations Educational, Scientific, and Cultural 
Organization), and UNDP (the United Nations Development 
Program), will be created. It will involve all these 
agencies, but be at a higher level; the director will be 
appointed by the Secretary General, Boutros Boutros-Ghali.

They're doing this to resolve conflicts and competition 
between those agencies. They're also hoping to get the 
nations of the world to spend more money on AIDS programs.

The United States government has led this reform effort. 
Hopefully it will succeed in creating an improved program, 
and will increase U.S. support for that program.

James: What is known about France's call for the 
international summit?

Boneberg: The French government, the new conservative Prime 
Minister of France, has shown remarkable political leadership 
in calling for the highest level summit on AIDS. He is asking 
the heads of state of the 14 nations that donate the most to 
global AIDS programs to meet in Paris in June to discuss the 
global AIDS pandemic and the world's response to it.

This will be the highest level AIDS discussion ever. In the 
United States, we hope that activists will urge President 
Clinton to attend; or if not the president, then Vice 
President Gore or Secretary of State Christopher -- and have 
the U.S. play a leadership role in getting the nations of the 
world to expand their commitment to global AIDS programs. 
This is an extraordinary opportunity for AIDS activists.

James: Explain the U.S. restructuring of foreign aid -- and 
how AIDS will be affected. 

Boneberg: The United States, in the post Cold War era, is 
moving to direct its foreign aid away from being country 
specific (if you ally with us against the Soviet block, we'll 
give you money) to issue specific. Among the issues are 
concerns such as democratization (which includes human 
rights), and population control (which includes health). AIDS 
is both a health and a development issue.

This movement from nations to issues is positive, something 
that will greatly help people who care about issues, such as 
AIDS, or health, or human rights, in improving U.S. foreign 
policy.

Unfortunately the initial proposal does not discuss AIDS at 
all. It barely discusses health, and only in the context of 
population control. And AIDS programs within the State 
Department have actually been demoted one level.

What we need to do is make sure that AIDS, though not now a 
paramount issue for U.S. foreign policy, is still considered, 
and is fully integrated into the overall foreign-policy goals 
of the United States government. That will be decided in a 
debate in Congress, and in the nation, this year. By the end 
of 1994, the draft proposal that is now circulating will have 
been approved by Congress, and the restructuring of U.S. 
foreign-assistance programs will be completed.

James: What is being done to address human-rights concerns 
around the world for people with HIV and AIDS?

Boneberg: This is among the most discouraging issues. 
Although U.S. activists clearly see the connection between 
human rights and AIDS prevention, that is not universally 
accepted. In fact, the U.S. State Department Bureau for Human 
Rights and Humanitarian Affairs did not actively involve 
itself in HIV or AIDS issues. And in the U.N., the AIDS 
reforms that are underway have not involved the U.N. 
Institute for Human Rights, or the Human Rights Commission.

We need to say, to the people who are re-creating global AIDS 
policies and programs, that the human rights of women, the 
human rights of lesbian and gay people, the human rights of 
other people, are critical in the prevention of HIV. For 
example, if women do not have the minimal human rights to be 
able to demand condom use during intercourse, then the condom 
campaigns will fail. There must be inclusion of human-rights 
experts in the planning of AIDS prevention programs. This is 
a major goal for GAAN -- and I hope for any AIDS activist 
dealing with policy in 1994.

James: How much press have any of these received in the U.S.?

Boneberg: None. There has been minimal press on the Summit. 
There's been nothing at all on the U.N. programs. There's 
been minimal press on the foreign aid revision, but nothing 
AIDS-specific. And nothing on AIDS human rights concerns.

James: Can you give us an example of how international policy 
affects the discovery of new treatments?

Boneberg: Some of the most important drugs in history have 
been discovered in plants. Often they are first found by 
traditional healers. Sometimes they are discovered through 
screening programs run by governments or by private 
companies.

Today, with the Biodiversity Treaty, many countries are 
beginning to insist on receiving an equitable share of the 
profits from plants and from plant genes discovered in their 
territory. We have no problem with that. But there are 
concerns that negotiation delays, political conflicts, or 
bureaucratic gridlock could seriously delay important drugs. 
If this happens, everyone involved will lose -- and many 
could lose their lives. So the AIDS community should pay 
attention, to make sure that agreements and arrangements work 
smoothly.

James: What are GAAN's plans for 1994?

Boneberg: First, we are researching the international AIDS 
programs, and included in that are meetings with the highest 
levels of the State Department. We have already met with the 
heads of AIDS programs in USAID (the U.S. Agency for 
International Development), in UNICEF, in the Global Program 
on AIDS, and in the United Nations Development Program. We 
now want to meet higher level people, both in the U.N. and in 
the State Department, to make sure that we understand what 
they are proposing, and that they understand our concerns. In 
the Clinton administration, we see the people as friendly; we 
just have to get their attention. Once we have their 
attention, and they reply to our concerns, such as AIDS and 
human rights, then we can see if there's disagreement. It may 
well be that we agree, and there won't be a need for advocacy 
as such, only a need for education. Our exploring is 
occurring at a high level, where it has never been done 
before. No organization in the world has ever met with this 
level of people in the United States government to try to 
influence international AIDS programs.

Our major priority is to inform U.S. AIDS organizations, so 
that they can enter the dialog and influence events when 
necessary. The U.S. AIDS community has great potential 
leverage with governments throughout the world, because of 
the U.S. assistance programs. But until we are informed and 
connected, we have little or no influence.

Specific GAAN programs for 1994 include:

* Briefings at the Tenth International Conference on AIDS, 
Yokohama, August 7-12; 

* Briefings and support to national delegations wishing to 
visit their nation's mission to the United Nations, in 
conjunction with the Stonewall 25 International March on the 
United Nations to Affirm the Human Rights of Lesbian and Gay 
People, New York, June 26; 

* Organizing the International AIDS Candlelight Memorials 
worldwide, in May (Mobilization Against AIDS will continue 
organizing the Candlelight Memorials within the U.S.); and 

* Leading the reactivation of the Policy Task Force of ICASO, 
the International Coalition of AIDS Service Organizations. 
(GAAN is already the U.S. representative of ICASO.)

AIDS is a global problem, in a world which is becoming more 
interconnected at an accelerating pace. To pursue U.S. 
domestic policy blindly, without at least an awareness of 
international events and issues, is dangerous. The global 
forum is increasingly important; if we default, we leave it 
to others with their agendas. To collectively ignore 
international programs and agencies is to abandon our future.

Join the Global Network

* Organizational support. GAAN will only work if it is 
supported by many AIDS organizations, both in the U.S. and in 
other countries. Organization dues are low -- for example, 
$100 per year for groups with annual budgets from $100,000 to 
$500,000. Dues are waived for organizations with annual 
budgets under $100,000. In return, organizations receive 
briefing papers and reports, in-person briefings, and a 
newsletter -- and the chance to be involved and represented 
in global AIDS policy, at far less cost than in-house staff 
would require.

* Specialist volunteers. GAAN needs specialists in global 
issues; in the culture, language, or governance of specific 
nations; in multinational agencies, such as the World Bank 
(or persons who have served in any nation's foreign service); 
or in relevant international technologies, such as the 
Internet.

* Seed money. GAAN needs help from individuals to get through 
the first two years, until organizational memberships and 
foundation grants are in place to provide ongoing support. 
Individual memberships are available, as is recognition on 
GAAN materials, including the letterhead; on the other hand, 
you can contribute anonymously if you want.

GAAN's total budget for 1994 is $82,500. This money is not 
yet in hand, meaning that GAAN can happen only with your 
support. Paul Boneberg and Donna Rae Palmer (who is 
coordinating the International AIDS Candlelight Memorials) 
are donating their work at this time, but staff support, as 
well as increased funding for printing, postage, etc., will 
be essential for the organization to fulfill its potential.

To contribute, send a check to GAAN, attn: Donna Rae Palmer, 
P.O. Box 376, Lagunitas, California, 94938. If your 
contribution must be tax deductible, you can restrict the 
funds to the International Candlelight Memorials; in that 
case, write the check to the GAAN Candlelight Fund, and it 
will go through GAAN's fiscal sponsor for the Candlelight.

GAAN is a nonprofit organization governed by a board of 
directors. The founding board includes Reggie Williams, 
executive director, National Task Force on AIDS Prevention; 
Laurie McBride, executive director, LIFE AIDS Lobby; Dr. 
Joyce Hunter, president, National Lesbian and Gay Health 
Foundation; and Dr. Tom Lloyd, co-chair, Mobilization Against 
AIDS.

For more information, write to GAAN, or call Paul Boneberg at 
415/488-1453, or send email to Internet address 
globalaids@aol.com.


***** Tenth International Conference on AIDS, Yokohama, 
      August 7-12: Abstract Submission; Scholarship 
      Information

Researchers submitting abstracts to the Tenth International 
Conference on AIDS should note that they need to be delivered 
(not faxed) to Japan, and arrive no later than February 28, 
1994. Because of the international date line, February 28 in 
Japan is February 27 in the U.S.

For instructions on submitting abstracts, and the official 
forms required, persons in the U.S. can obtain the Second 
Announcement and Call for Abstracts from Gil-Kenes Travel, 
Congress Department, 800/223-3855, fax 215/568-0696. Gil-
Kenes Travel is the official agent for the Conference in the 
U.S. Note that persons submitting abstracts to the Conference 
must also register at that time.

A travel and hotel package is available through Gil-Kenes 
Travel, at the numbers above. Alternatively, hotel 
accommodations can be arranged through Japan Travel Bureau, 
Inc., International Travel Division, Convention Center (Ref. 
CD100757-002), phone 81-3-3276-7885, fax 3276-7806 or 3271-
4134. For more information, see the Second Announcement; and 
see the Tenth International Conference brochure from Gil-
Kenes Travel.

At least two scholarship programs have been announced:

(1) "The Organizing Committee has devised scholarship 
programs to facilitate the participation of persons from: 
NGOs, developing countries, those with HIV/AIDS. For details 
and a scholarship application form, please write to the 
Secretariat specifying your needs." The address is: 
Secretariat for the Tenth International Conference on AIDS-
International Conference on STD, c/o Congress Corporation, 
Namiki Bldg., 5-3 Kamiyama-cho, Shibuya-ku, Tokyo 150, Japan. 
Phone 81-3-3466-5812, fax 3466-5929.

(2) Information about a separate U.S. sponsorship program for 
persons with HIV can be obtained from: Christina Lewis, 
National Association of People with AIDS, 1413 K St., NW, 8th 
floor, Washington, DC 20005, 202/898-0414, fax 202/898-0435.

The conference registration fee goes up after March 31. Press 
registration is free. For more information, see the Second 
Announcement.

After the Yokohama meeting, the International Conference will 
change from annual to every two years, so there will be no 
conference in 1995.

Comment

We expect this conference to be much like previous ones, only 
more expensive. It will be worth attending if possible, but 
not essential. AIDS TREATMENT NEWS is going, but we can only 
send one person this year.

We believe that the important progress in future 
international collaboration and information dissemination 
will be through computer communication technology -- which is 
more effective and far less expensive than sending people to 
meetings. Computers will never replace meetings entirely, but 
will make those which do occur be more productive. [Note: See 
article below on AIDS information already available through 
computer bulletin board systems.]


****** New York City, Philadelphia, Pittsburgh, Sherman Oaks, 
      Stony Brook: Important Protease Trial Recruiting

A trial of the Merck protease inhibitor, code-named L-735,524 
(L-524), is being conducted in the five cities above.

Volunteers must be asymptomatic, with a T-helper count under 
500, and must be p24 positive (at least 25 pg/ml). They will 
be randomly assigned to one of three treatment arms: low dose 
L-524, high dose L-524, or AZT. The trial will last for 24 
weeks. "If L-735,524 is found to be well-tolerated and shows 
biologic activity, participants who complete the study may 
have the opportunity to continue in an extension to the 
study." Sixty volunteers are being sought.

For more information, contact the site near you:

* Bellevue Hospital Clinical Research Unit, New York 
University, 212/263-6565, clinic coordinator Mary Ann 
Kiernan, R.N.

* University of Pennsylvania, Infectious Diseases Section, 
Department of Medicine, 215/662-6932, clinic coordinators 
Heidi Lehman, R.N., or Susan Hansen-Flaschen, R.N.

* Pitt Treatment Evaluation Unit, University of Pittsburgh, 
412/647-8125, clinic coordinator Nancy Mantz, R.N.

* Pacific Oaks Medical Group, Department of Research and 
Scientific Investigation, 818/906-6279, clinic coordinator 
Jackie Bennette, R.N.

* AIDS Treatment and Evaluation Unit, University Hospital, 
State University of New York at Stony Brook, 516/444-1658, 
clinic coordinator Ruth Ann Burk, R.N.

Comment

Protease inhibitors, a new kind of anti-HIV drug, have 
generated more interest among researchers than any other kind 
of potential HIV treatment. A number of companies are 
developing protease inhibitors, which are expected to begin 
large-scale clinical trials in 1994. L-524 is one of the 
leading drugs of this class. 


***** Primary HIV Infection, and the Immune Response

by Dave Gilden

[Note: This is the second and final part of our coverage of 
the First National Conference on Human Retroviruses and 
Related Infections. The first part appeared in issue #190.]

With about 40 thousand new HIV infections per year in the 
United States, the domestic AIDS epidemic is hardly over. Yet 
until now little attention has been devoted to finding those 
who are newly infected, or to finding prompt treatment 
regimens that might attenuate the course of their disease. 

Part of the difficulty is detecting HIV infection at its 
earliest point, since people usually have only mild or vague 
flu-like symptoms when they first contract the virus. (This 
initial period of symptomatic HIV infection is known as 
"acute" or "primary" infection. The chronic period of 
infection occurs after the original symptoms disappear and 
the slowly progressing disease process takes over.)

Primary HIV infection is hard to diagnose because the 
standard HIV blood test does not detect the virus directly. 
Instead, this test only checks for antibodies produced by the 
body in response to HIV. It is worthless for uncovering new 
infections, since antibodies to HIV appear some weeks or 
months after transmission takes place.

The First National Conference on Human Retroviruses and 
Related Infections, last month in Washington, D.C., brought 
together some of the researchers who are studying primary 
infection. The result was a broad discussion of some of the 
great unanswered questions concerning what increasingly 
appears to be a critical time in the development of AIDS.

George Shaw, M.D., of the University of Alabama, indicated 
the nature of the problem: In a 1989 survey of 2300 emergency 
room visitors at Baltimore's Johns Hopkins Hospital, 180 
patients were HIV-positive by the standard HIV antibody test. 
But there were six patients with unsuspected HIV who tested 
negative on the antibody test but positive on a direct test 
for HIV -- the test that looks for HIV core (or "p24") 
proteins in a person's blood. Dr. Shaw estimated that Johns 
Hopkins, a hospital with a great deal of AIDS consciousness 
due to its location, may see 70 to 115 patients a year with 
undetected primary HIV.

Dr. Shaw has followed six patients at his home hospital in 
Birmingham, Alabama who came in with serious acute HIV 
infections. They were very ill for two weeks, exhibiting a 
wide array of symptoms, from rashes and swollen lymph glands 
to liver and neural dysfunctions. In every case the symptoms 
cleared up spontaneously within two weeks, and the six 
started producing antibodies to HIV a month later. Their 
histories diverged after that; one has maintained a normal T-
helper cell count for the past three years while two others 
saw their T-helper cell counts drop precipitously to the 
levels associated with AIDS in the year after contracting 
HIV.

(Note that those who are sick enough during primary infection 
to seek medical attention may not at all be representative of 
others who never come to the attention of researchers because 
their primary infection is mild or even asymptomatic. This is 
another problem in studying primary HIV disease.)

The range in response may be due to the type of virus each 
person received during transmission. Jaap Goudsmit, M.D., at 
the University of Amsterdam noted, though, that his group had 
found that less than five percent of acute HIV infections 
involved especially virulent viral strains (the so-called 
"syncytium-inducing" or SI types). An assessment by 
Goudsmit's group of 42 people who contracted a non-SI type of 
HIV could find no further predictor of progression. Shortly 
after acute infection, neither HIV blood levels, viral 
genetic characteristics, nor T-helper cell count, separated 
those who developed AIDS in the next four years from those 
who were still AIDS-free after six years. But in the three 
years after acute infection, HIV levels seemed to go down in 
slow progresssors, while remaining stable in faster 
progressors, suggesting that the long-term quality of immune 
defenses is the crucial factor in the speed of AIDS onset.

David Ho, M.D., of the Aaron Diamond AIDS Research Center in 
New York, confirmed that highly virulent SI viral varieties 
hardly ever seem to get transmitted. His lab analyzed the 
virus found in 20 men with new HIV infections, all contracted 
sexually. When trying to culture this virus, researchers 
noticed that it grows much better in the monocyte-macrophage 
type of cell (an immune system sentinel cell that traps 
foreign microbes) than in T-helper cells. On the other hand, 
the virulent virus which is often found in advanced HIV 
infection grows better in T-helper cells.

The virus in newly infected people also is very homogeneous. 
Dr. Ho and his collaborators have identified the genetic 
sequences of the viral strains in five of the recipients, as 
well as the people they received HIV from. Each recipient's 
HIV varied little in its genetic makeup, whereas the HIV in 
each donor (all asymptomatic men) exhibited a large degree of 
genetic diversity. A great deal of mutation clearly takes 
place after infection, as HIV adapts to its new host.

The virus present during the acute infection seems to be a 
minor variant present in small numbers in the donor. The 
variant can be found in the cells (probably monocytes or 
other immune cells) present in the donor's semen and to a 
lesser extent in the seminal fluid (and sometimes not at 
all). It cannot be detected in the cells or plasma of the 
blood. (This suggests that the forms of HIV which are readily 
transmitted are not highly pathogenic (disease causing) by 
themselves. But HIV mutates very rapidly, forming many 
different variants, some of which are highly pathogenic.)

Dr. Ho noted that these findings have serious implications 
for vaccine research, which has concentrated on laboratory 
strains of HIV grown in T-helper cells. This is a variety 
with properties considerably different from the type of HIV 
that seems most transmissible. In future vaccine 
investigations, "we need to target transmitted virus, not 
those highly adapted to T-cell lines," Dr. Ho said.

When HIV first enters the body, it can cause abrupt illness 
because there is no immune response that specifically targets 
the virus. Even before antibody production begins, though, 
most of the HIV present in the bloodstream has disappeared. 
Richard Koup, one of Dr. Ho's colleagues at the Aaron Diamond 
Center, described his group's analysis of how immune defenses 
against HIV unfolded after transmission in five patients. (In 
only two of these are samples available from the period 
before antibody production began.)

Dr. Koup's observations indicated that cytotoxic T-
lymphocytes (CTLs), designed to hunt out and kill HIV-
infected cells, are the first HIV-specific immune response. 
They stem the initial burst of HIV replication. It can take a 
year to develop anti-HIV antibodies that can effectively 
block the virus from infecting new cells. The one person in 
the group who had a sustained, dramatic fall in T-helper cell 
count also had a delay in the emergence of anti-HIV CTLs. 

This conclusion has considerable implications for vaccine 
development. It was supported by a number of other 
presentations at the conference. There has been some recent 
work, however, that indicates that the CTL and antibody 
responses interfere with one another. The first gradually 
fails as the second increases. This is the so-called switch 
from the Th1 to Th2 immune mode. The Aaron Diamond group 
found that the CTL (killer cell) response peaks and then goes 
down, but it holds for years. There is considerable overlap 
between the two modes.

One of the conventional observations about post-acute 
conditions in HIV infection is that viral levels in the blood 
are reduced almost to zero. Newer, more sensitive tests, such 
as those involving polymerase chain reaction (PCR), confirm 
that viral levels do go down by a hundred or a thousand times 
after the acute infection ends. This is a greater reduction 
than any currently available treatment can accomplish, but 
there is still much HIV in the bloodstream. Dr. Shaw wondered 
why HIV is usually difficult or impossible to culture from 
the blood of infected individuals during this stage.

Meanwhile, the continuing work with lymph nodes, at the 
National Institutes of Health and elsewhere, further 
documents that during the symptomless post-acute period, HIV 
concentrates in these centers of immune activity. The lymph-
node data suggest that use of a drug like AZT, which helps 
prevent the infection of new cells, might be most useful 
during acute infection. At that point, few cells harbor HIV; 
perhaps this number could be kept low, with the lymph nodes 
greatly protected. Anthony Fauci, M.D., the director of the 
National Institute of Allergy and Infectious Diseases, raised 
this possibility in a recent article.(1) Dr. Fauci also 
warned of the risk of developing AZT-resistant HIV strains 
(which will then be hard to treat later on) and of the drug's 
toxic side effects (which may perturb immune system 
function). 

But a questioner at the Retrovirus Conference wondered 
whether using AZT at the first possible moment might lead to 
a faster decline. Panelists replied that no data was 
available on the risk of accelerating disease progression.

The questioner's concern may have stemmed from a letter from 
a research group in Australia which is testing AZT to treat 
primary HIV infection.(2) The letter described their 
experience treating seven gay men with acute HIV infection. 
The seven received a total of one gram of zidovudine a day 
for an average of 56 days, and were compared with records of 
15 untreated men used as historical controls. After two 
months the treated group had half the cytotoxic lymphocyte 
and total lymphocyte counts of the untreated group. T-helper 
counts were about the same for both groups. The authors 
theorized that reducing HIV replication with AZT may dampen 
the immune response, especially against the normally more 
virulent, "syncytium-inducing" strains. The authors noted 
that AZT might also directly suppress CTL (cytotoxic T 
lymphocyte) replication. The long-term effects, if any, of 
the reduced lymphocyte counts remain to be seen; the letter 
only reported the blood work, not symptoms or clinical 
condition of the volunteers.

The Australian group suggested that it might be better to use 
immune modulators, "such as IL-2 or the interferons," instead 
of AZT for treating primary HIV infection -- to promote the 
CTL response.

The NIH has an on-going trial to test AZT for primary 
infection, but that trial is moving very slowly because of 
the difficulty of finding appropriate participants. At 
present, only about ten people are enrolled, of the 80 
positions which are open.

This trial is being conducted in nine cities: Baltimore, 
Chicago, Dallas, Fort Lauderdale, Houston, Los Angeles, New 
York City, Palo Alto, and Providence. For information about 
enrolling patients who may have primary HIV infection, 
physicians should call the AIDS Clinical Trials Information 
Service, 800/TRIALS-A.

References

1. Fauci AS. Multifactorial nature of human immunodeficiency 
virus disease: Implications for theory. SCIENCE. November 12, 
1993; volume 262, pages 1011-1018.

2. Tindall B, Carr A, Goldstein D, Penny R, and Cooper DA. 
AIDS. January 1993; volume 7, number 1, pages 127-128.


***** Computer Access to Treatment Information

by Tadd Tobias

AIDS information by computer is available 24 hours a day, 
from any location with a telephone -- often for no cost 
except for a local or long-distance call. More AIDS 
information is available this way than in any library -- and 
often it's more recent information, since there is no 
printing or mailing delay. Also, some computer systems 
include powerful searching facilities to help users locate 
what they want. Other advantages of computer communication 
are that there is no phone tag, time zones don't matter, and 
copies can be retransmitted easily and with no loss of 
quality. These systems also offer privacy, and the 
convenience of not needing to leave your home or office.

The main disadvantage is the difficulty of getting started. 
The computer industry has consistently done poorly in making 
its equipment and software easy to use. Those who are not 
already familiar with computers, and are not technically 
inclined, should find someone to help them begin.

What about cost? Most people do not buy a computer just for 
information access, but use one which is already available at 
home, at work, or through friends or organizations. If the 
computer does not already have a "modem" -- the device that 
connects it to a telephone line -- one can be purchased for 
about $100. Aside from the equipment cost, there may also be 
charges for using the remote computer. This article, however, 
focuses mainly on free systems.

One disadvantage and advantage together is that, in many 
cases, anyone can distribute information through these 
channels because they are not tightly controlled like 
professional peer-reviewed journals or carefully edited 
newsletters. The full spectrum of opinions and ideas is 
present. Sometimes many messages will come from a few people 
with an axe to grind. Alternative and mainstream ideas may be 
mixed together, as well as professional and lay opinions. 
This medium encourages information exchange and lively 
debate; but users should realize that accuracy and 
reliability will vary.

About This Article

Our focus here is on computer bulletin board systems (BBS) 
which specialize in AIDS information, and which do not charge 
for access. This article does not cover research databases, 
which usually have much more comprehensive and better 
organized information, but are expensive and generally used 
by professionals. (Such research systems are very important, 
however, and we may review this subject later.)

This article does not focus on electronic mail, although we 
mention it in passing. For more information about electronic 
mail, see AIDS TREATMENT NEWS #172, April 2, 1993.

The list below is not comprehensive because of the large 
number of BBS systems. We selected a few to give our readers 
a place to begin, and a sense of the variety available.

Technical notes:

(1) If you need to deal with communication settings in your 
software, all the systems below use no parity, 8 data bits, 
and 1 stop bit.

(2) Although we do not cover electronic mail, we do include 
an Internet address for some of the systems listed below, for 
the convenience of anyone who may want to communicate with 
the system operators in this way. Otherwise, you can ignore 
the Internet address. 

Selected Bulletin Board Systems (BBS)

* HIV/AIDS Information BBS. Modem phone, 714/248-2836. 
Internet address: mary.elizabeth@aegis.hivnet.org

This comprehensive information collection is current and 
easily accessible; simply stated, this is one of the best. 
HIV/AIDS Information BBS also serves as the central hub of 
the AEGIS (AIDS Education General Information System) network 
which links AIDS-related bulletin boards and networks in many 
U.S. and Canadian cities, and in Africa, Asia, Australia, and 
Europe.

For a complete list of the other AEGIS systems, plus some 
other AIDS bulletin boards (one of which may be reachable by 
a local call in your city, saving long-distance charges), 
select "<G>ENA/AEGIS Affiliate BBS Directory," under the 
system's main menu. Most other systems will not have all of 
the information available on HIV/AIDS Information BBS. [Note: 
When the listing stops at the end of a page, type the Enter 
or Return key for an additional page -- or type Q to quit 
this directory and return to the main menu.]

As with many bulletin board systems, HIV/AIDS Information BBS 
consists of two basic parts: a message area and a file area. 
The message area allows you to read and write messages, 
either to public, subject-specific conferences, or privately 
to other AEGIS users through electronic mail. The AEGIS 
public conferences available are AIDS.DATA, AIDS.DIALOGUE, 
AIDS.DRUGS, AIDS.NEWS, AIDS.SPIRITUAL, AIDS.TRIALS, and 
AIDS.WOMEN. Users can post relevant information, ask 
questions, or simply read what others have written. In 
addition to these AEGIS conferences, the system makes 
available: HIVNet (which is a European sister organization to 
AEGIS, with conferences in French, German, and Dutch); 
FidoNet conferences AIDS/ARC, AIDS-HIV, ACTUP, and THE WHITE 
HOUSE; as well as the Internet Newsgroups sci.med.aids and 
bionet.molbio.hiv. (Some of these conferences are read-only 
for users of HIV/AIDS Information BBS.)

The second component is the files area. Known on this system 
as Online Library Services, it has over 80,000 files 
available for reading immediately or for downloading 
(transmitting to your computer for use later), with hundreds 
of new files added each month. These files include 
information on current AIDS-related treatment, research, 
epidemiology/surveillance, education/prevention, etc., 
available from the U.S. Public Health Service, National 
Institutes of Health, National Institute of Allergies and 
Infectious Diseases, Food and Drug Administration, Centers 
for Disease Control, National AIDS Information Clearinghouse, 
and National Library of Medicine. Several newsletters are 
available, including AIDS TREATMENT NEWS, Being Alive, 
Critical Path AIDS Project, STEP Perspective from Seattle 
Treatment Education Project, and Treatment Issues from Gay 
Men's Health Crisis. Information is also available from major 
newspapers and wire services. Other resources include 
conference proceedings, research abstracts, an AIDS 
bibliography for books in print, a glossary of AIDS-related 
terminology, an introductory course in AIDS, and a listing of 
AIDS support organizations.

This is only a brief overview of the some of materials 
available. To make the information more accessible, a keyword 
search is provided. Users can search most of the databases 
using up to ten keywords, which can be combined using the 
operators 'and', 'or', and 'not'. After the search, the 
results are presented and the user is given the choice of 
viewing the text immediately, or downloading the files for 
reading later.

We encourage people to connect with this system to explore it 
for themselves. Callers have immediate free access to the 
bulletin board, though each caller is limited to 40 minutes 
per call, 6 calls daily because the demand is high. Callers 
who wish to remain anonymous may log on as "aids info," but 
then they can only read information; it is necessary to 
register to get permission to write to the conferences. 

Once connected, we strongly recommend reading the notice for 
first-time callers, available from the main menu. It provides 
some important information regarding the use of this system. 

If you have difficulty or questions, you may contact the 
system operator, Mary Elizabeth, by voice telephone at 
714/248-5843 (9 am to 4 pm Pacific time). She is willing to 
provide whatever assistance may be necessary. 

* AIDS Info BBS. Modem phone, 415/626-1246. Once the system 
answers, reply with one or two carriage returns. Further 
instructions will be provided.

This is another excellent resource for gathering AIDS 
treatment information. Despite similar names, it is separate 
from the one above. The AIDS Info BBS is a free bulletin 
board system specializing strictly in AIDS information. 
Started in San Francisco in July 1985 by Ben Gardiner, this 
free bulletin board has provided the community quality AIDS 
information since its inception. Like the above system, this 
BBS also offers users anonymous access to an extensive online 
AIDS Library. 

AIDS Info BBS also has the unique advantage of eight years of 
operation; for those interested in the history of the 
epidemic, it has archives created by community response to 
events now past. Its other resources include several 
publications (including AIDS TREATMENT NEWS), statistics and 
epidemiology reports from the U.S. Centers for Disease 
Control, an open forum for posting, requesting, or discussing 
information, and electronic mail for use within the system. 
Users should note, however, that this system utilizes a 
command language that is unique and somewhat outdated. 
Although the system remains useful and fully functional, it 
is not the more modern communication technology used by some 
other systems.

* Critical Path AIDS Project BBS. Modem phone, 215/463-7160. 
At LOGIN prompt, type 'bbs'. Internet address: 
kiyoshi@cpp.pha.pa.us.

This free system is an excellent resource for AIDS treatment, 
research, and policy information. Users may log on with a 
pseudonym, or they may register with a real name (which is 
required for users who wish to use electronic mail 
facilities). Resources available include AIDS treatment 
periodicals, full-text ACTG (AIDS Clinical Trials Group) 
research protocols, International AIDS Conference abstracts, 
resource directories, public benefits information, and 
numerous discussion areas including one for ACT UP. This 
bulletin board system utilizes Magpie software which is 
unlike most other BBS. For the beginner, it may be difficult 
to use, so it is recommended that new users take full 
advantage of the online tutorial and user's manual. For 
assistance with the BBS, or to access other services offered 
by Critical Path AIDS Project, call 215/545-2212 (24-hours a 
day).

* HNS HIV-NET. (Home Nutrition Services, Inc.) Modem phone, 
800/788-4118. 

Funded by a home health care corporation, this system's 
primary focus is to provide doctors and allied health care 
professionals treating HIV disease an opportunity to network 
and exchange information. Other users eligible for access 
include those involved in the care of persons living with 
AIDS/HIV (including office managers, social workers, nurses, 
pharmacists, and community service organizations). Access is 
free -- but limited to those who are eligible. Interested 
individuals must log on, answer registration questions, and 
then call back in 24 to 48 hours to see if they have been 
accepted. 

* AIDSNET BBS. Modem phone, 607/777-2158. 

Operated by the Decker School of Nursing, State University of 
New York at Binghamton, this system is designed to aid in the 
delivery of healthcare to persons living with HIV/AIDS in 
rural, upstate New York. It provides nursing consultation, 
case management, social support, health education, and AIDS 
treatment information. Although this service is targeted to 
serve clients in New York State with the intent to improve 
their home healthcare, it may be used by anyone. The system 
is free.

* Black Bag BBS. Modem phone, 302/994-3772.

This is a medical information network operated by Edward Del 
Grosso, M.D. It deals with a wide range of medical issues, 
not only HIV/AIDS. The message area reflects the diversity of 
the materials found on this system with virtually every 
medical discipline having a forum for the discussion of 
topics of concern. This includes information about AIDS, as 
well as several disability-oriented discussions. A collection 
of medical software (public domain and shareware) is 
available for downloading. 

This system includes an interactive text-based database of 
diseases, medical procedures, medications, symptoms, and 
treatments. Also available is the Black Bag Medical BBS List, 
of over 240 bulletin board systems all over the world which 
primarily address one of the following areas: medicine, 
science, alcohol and drug dependency, disabilities, or 
psychology. The numbers are verified every three months. 

Other Resources 

* sci.med.aids (a Newsgroup available on the Internet).

This is the foremost resource for AIDS information on the 
Internet. The moderators who run this Newsgroup state that it 
reaches 20,000 active subscribers, in all fifty states and in 
100 countries. Readers should note that one can only read 
sci.med.aids through HIV/AIDS Information BBS (as explained 
above) and some other systems. In order to write messages to 
sci.med.aids, one must be able to send electronic mail to an 
Internet address. 

Many resources are available through sci.med.aids. The users 
of the Internet and sci.med.aids tend to be associated with 
universities, research groups, and other professional 
organizations. Research abstracts, treatment newsletters, 
press releases, clinical trials announcements, and news 
summaries can all be found in this Newsgroup. The organizers 
of this resource act as moderators, screening material before 
it is posted. People who access sci.med.aids will find it to 
be a lively forum for debate and information sharing among 
those working with AIDS-related issues.

* CAIN (Computerized AIDS Information Network). Available on 
the Delphi network; Delphi username: lacain. For more 
information, call 213/993-7415. Internet address: 
lacain@delphi.com. 

This system is operated by the Los Angeles Gay and Lesbian 
Community Services Center with support from the State of 
California Office of AIDS. Online communication and AIDS 
information services are available, including bibliographic, 
research, resource/referral, treatment, epidemiology, and 
education/prevention materials. Primarily serving California 
AIDS agencies, the resources reflect regional issues, 
although national statistics and information are also 
available. The network is designed to allow members to 
contribute information to the various databases. In addition 
to California agencies, the general public and persons with 
AIDS may also find the system useful. 

To use CAIN, one must subscribe to the Delphi Network (a 
large, commercial "information utility") and pay a minimum 
monthly fee. As a result, anonymous access in not available. 

But one advantage is that Delphi (along with many other 
systems, including America Online, CompuServe, PeaceNet, 
etc.) has a "gateway" for sending and receiving electronic 
mail through the Internet. This means, for example, that 
subscribers can submit material to sci.med.aids, as described 
above. BBS systems, which allow free and often anonymous 
access, seldom provide their users with access to the 
Internet.

To subscribe to CAIN, use your computer to call 800/365-4636, 
and press <return> once or twice. At the PASSWORD prompt, 
enter "GLCSC" (without quotes). The system will then provide 
further instructions. For voice assistance, call 800/695-
4005.



***** AIDS TREATMENT NEWS
      Published twice monthly

Subscription and Editorial Office:
   P.O. Box 411256
   San Francisco, CA 94141
   800/TREAT-1-2  toll-free U.S. and Canada
   415/255-0588 regular office number
   fax: 415/255-4659
   Internet: aidsnews.igc.apc.org
Editor and Publisher:
   John S. James
Reader Services and Business:
   David Keith
   Thom Fontaine
   Tadd Tobias
   Rae Trewartha

Statement of Purpose:
AIDS TREATMENT NEWS reports on experimental and 
standard treatments, especially those available now. We 
interview physicians, scientists, other health 
professionals, and persons with AIDS or HIV; we also 
collect information from meetings and conferences, 
medical journals, and computer databases. Long-term 
survivors have usually tried many different treatments, 
and found combinations which work for them. AIDS 
Treatment News does not recommend particular 
therapies, but seeks to increase the options available.

Subscription Information: Call 800/TREAT-1-2
   Businesses, Institutions, Professionals: $230/year.
   Nonprofit organizations: $115/year.
   Individuals: $100/year, or $60 for six months.
   Special discount for persons with financial difficulties:
   $45/year, or $24 for six months. If you cannot afford 
   a subscription, please write or call.
   Outside North, Central, or South America, add air mail 
   postage: $20/year, $10 for six months.
   Back issues available.
   Fax subscriptions, bulk rates, and multiple subscriptions
   are available; contact our office for details.
   Please send U.S. funds: personal check or bank draft, 
   international postal money order, or travelers checks. 
   VISA, Mastercard, and purchase orders also accepted.

ISSN # 1052-4207 

Copyright 1994 by John S. James.  Permission granted for 
noncommercial reproduction, provided that our address 
and phone number are included if more than short 
quotations are used.


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