 DISTRIBUTED BY GENA/aegis (714.248.2836 * 8N1/Full Duplex * v.34)

AIDS TREATMENT NEWS Issue #212, December 12, 1994
   phone 800/TREAT-1-2, or 415/255-0588

CONTENTS

3TC Plus AZT: Important Treatment Advance?

Vpr -- A Viral Protein Is Found to Activate HIV

Untold History: Treatment Activism and Growth Hormone

New Computer Communication for AIDS Agencies -- HandsNet 
AIDS/HIV Forum

Threats to Ryan White, AIDS Funding? Call for Information


***** 3TC Plus AZT: Important Treatment Advance?

by John S. James

There has been much excitement among researchers and 
activists about the results of European trials, in over 300 
patients, which compared the experimental antiviral 3TC (also 
called lamivudine), used in combination with AZT, to AZT 
alone. The results, as measured by blood tests at intervals 
for up to 48 weeks, were considerably better than researchers 
would have expected with approved antiviral drugs or 
combinations. Some questions remain, however, because these 
trials were not designed to detect differences in disease 
progression; and there have been well-publicized cases when 
smaller improvements in blood tests led to little or no 
improvement in disease progression or ultimate survival. But 
trials to confirm this ultimate benefit will begin early in 
1995 and then will probably last well over a year; those who 
do not want to wait for definitive proof will need to make 
the best decisions possible from the information which is 
available. (Some confirmatory information -- but also based 
on blood-test improvements, not clinical disease progression 
-- will probably be presented at the Second National 
Conference on Human Retroviruses and Related Infections, 
January 29 - February 2, 1995, in Washington, D.C.)

We were not at the Second International Congress on Drug 
Therapy in HIV Infection, in Glasgow, Scotland, where the 3TC 
results were released on November 20. This article is based 
on conversations with several people who were there, and on 
press releases which summarized the data presented.

3TC Background

3TC is a nucleoside analog antiviral -- in the same general 
class as AZT or ddI -- which has been in human trials as an 
experimental HIV treatment for several years; in addition, it 
is also showing promise as a treatment for hepatitis B. Since 
October 1993 (earlier in Canada), 3TC has been available 
through an expanded-access program, for persons with T-helper 
counts under 300 who cannot tolerate, or do not benefit from, 
approved anti-HIV treatment (AZT, ddI, ddC, or d4T). This 
program is still open for enrolling new patients; for more 
information, see below. 3TC is being developed by Glaxo, 
which licensed rights to the drug in 1990 from BioChem Pharma 
Inc., a biotechnology company located in Laval, Quebec. Glaxo 
had discussed development arrangements with Burroughs-
Wellcome, but decided to develop the drug itself when the new 
results were announced.

In laboratory tests, 3TC has been found to be synergistic 
with AZT, meaning that the two drugs in combination work 
better than would be expected by adding their separate 
effects. One theory holds that this is because 3TC reverses 
HIV's resistance to AZT -- that when the virus has the 
mutation which makes it resistant to 3TC, it will be 
susceptible to AZT even if it also has the mutations which 
normally would confer AZT resistance. But other researchers 
believe that this proposed mechanism -- reversal of AZT 
resistance by 3TC -- could not explain the new data, which 
suggests that the synergy of the two drugs starts 
immediately, and then is maintained over time. AZT alone does 
not produce the same immediate improvement, even in AZT-naive 
patients in whom resistance would not be an issue. 
(Burroughs-Wellcome, which makes AZT, favors the former 
theory, while Glaxo, which makes 3TC, favors the latter.) 
More studies of drug resistance and synergy are now being 
conducted, and some new information should be available at 
the Human Retroviruses conference early next year.

3TC results for chronic hepatitis B (in HIV-negative 
patients) were released recently at a Chicago meeting of the 
American Association for the Study of Liver Diseases. 
Hepatitis B viral DNA become undetectable in all 22 patients 
treated with either 100 mg per day or 300 mg per day of 3TC. 
But treatment was stopped after 12 weeks in this study, and 
then the virus returned in 16 of the 22 patients, and 
remained undetectable in the other six -- five of whom had 
already failed interferon treatment. (For HIV treatment, at 
least 300 mg per day of 3TC is likely to be used 
indefinitely, suggesting that this HIV treatment may also 
control hepatitis B for those with both infections.)

Historically, an earlier version of 3TC was called BCH-189. 
BCH-189 is a mixture of equal parts of 3TC and a molecule 
which is a mirror image of 3TC. The molecule not used in 3TC 
does have anti-HIV activity, apparently less than that of 
3TC, but with a different drug-resistance profile.

The Glasgow Results

The results just presented at Glasgow came from two multi-
center trials in Europe.

A French study, involving 129 patients, was presented by 
Professor Christine Katlama from Paris; it compared 3TC plus 
AZT to AZT alone, in patients who had never taken AZT, or had 
taken it for less than four weeks. At entry, volunteers had a 
T-helper counts from 100 to 400 (median 256). They were 
randomly assigned to take one of the two drug regimens for 24 
weeks, then they were allowed to take the combination for an 
additional 24 weeks (all 55 patients given the choice of 
switching to combination therapy chose to do so). The 3TC 
dose was 300 mg twice daily; the AZT dose was 200 mg three 
times daily.

Those assigned to start the combination therapy had an 
average T-helper increase of 80 at week 24, and an average of 
49 over their starting value at week 48. The level of plasma 
HIV RNA was reduced 86 percent at week 24, and 91 percent at 
week 48. The level of virus in blood cells (determined by a 
viral culture test, to show how infectious the blood cells 
were) was reduced 99 percent at week 24, and 99 percent at 
week 48.

The comparison group, randomly assigned to take AZT alone for 
the first 24 weeks but then switched to the combination, had 
an average T-helper count decrease of 7 by week 24. By week 
48, after 24 weeks on the combination, they had an average T-
helper count increase of 40 above baseline. Plasma HIV RNA 
was reduced by only 36 percent at week 24, but by week 48 the 
decrease from baseline was 92 percent. The infectivity of the 
blood cells was reduced only 11 percent at week 24 (by AZT 
alone), but reduced 98 percent at week 48 (after 24 weeks on 
the combination).

How do these results compare with those that might be 
expected from other combination treatments, such as AZT plus 
ddI? For T-helper count and plasma HIV RNA, the 24-week 
improvements are within the range one might expect from other 
successful combinations. What is important is that they were 
sustained at 48 weeks, with the patients appearing to be 
considerably better at that time than when they started. The 
best results, of course, were in the reduced infectivity of 
blood cells; but here we do not have similar values from 
other combination trials for comparison.

A German study, testing the combination in AZT-experienced 
patients, was presented by Dr. Schlomo Staszewski from 
Frankfurt. This study compared AZT alone, AZT plus high-dose 
3TC (300 mg twice daily, the same dose used in the French 
study), and AZT plus low-dose 3TC (150 mg twice daily). Like 
the French study, it required participants to have T-helper 
count between 100 and 400 at entry (the median entry value 
was 249 for the AZT-only arm, 232 for the combination of AZT 
plus high-dose 3TC, and 246 for the combination of AZT plus 
low-dose 3TC). These patients also had to have at least 24 
weeks of prior treatment with AZT, but usually they had much 
more than that (mean prior AZT use, 24.9 MONTHS for the AZT-
only arm, 22.1 months for the high-dose combination arm, and 
24.4 months for the low-dose combination arm).

A total of 223 patients were randomly assigned to one of 
these three treatment arms, and treated for 24 weeks. The 48-
week data is not yet available; also, no virology data is 
available at this time.

At 24 weeks, the T-helper count was 33 above the starting 
value in the high-dose combination and 36 above starting 
value with the low-dose combination. In contrast, those on 
AZT alone had an average T-helper decrease of 21 at week 24.

All of the differences reported above for the French and 
German studies were statistically significant. And the drop-
out rate in both studies was low, 12 percent at week 24 in 
the French study. The low drop-out rate, plus the fact that 
no one chose not to go onto the open-label combination 
treatment at 24 weeks, makes it unlikely that selection bias 
had much effect on the result. (A high drop-out rate can 
falsely make a drug look good, since those who find out that 
they are doing poorly are more likely to leave the study, 
while those doing well are more likely to stay.) Note: 48-
week data was available on only 72 patients of the 129 in the 
French study. This difference is not due to drop-out, but to 
the fact that only some of the patients had reached the 48-
week point at the time the data was analyzed for presentation 
at the Glasgow meeting.

These studies were not designed to detect differences in 
clinical disease progression. In the French study, only one 
patient in the combination arm had a major opportunistic 
infection (esophageal candidiasis, which started five days 
into the study). In the German study there were 42 
"progression endpoints," with no statistically significant 
differences between the arms, but a trend favoring the 
combination treatment for major opportunistic conditions at 
least, according to data presented in Glasgow. We have not 
seen a breakdown on the minor events.

There were no unexpected toxicities of the combination 
treatment, and no statistically significant differences in 
side effects between the combination treatment and AZT alone.

Future Results and Studies, and Prospects for Approval

Two additional clinical trials in the U.S. and Canada are now 
finishing; results should be available early next year. These 
studies, in patients similar to those in the European trials 
presented at Glasgow, are comparing the 3TC plus AZT 
combination not only with AZT alone, but also with 3TC alone, 
and with AZT plus ddC.

In addition, Glaxo's expanded-access program, for patients 
with T-helper counts under 300 who cannot successfully use 
approved treatments, has now enrolled over 6,000 persons. In 
North America they have been randomly assigned to receive 150 
mg or 300 mg twice daily. This program is not expected to 
provide much information about the effectiveness of the drug, 
but the long-term experience with a large number of people 
should help provide assurance that there are no major 
unexpected toxicities.

In early 1995, Glaxo expects to start large-scale studies to 
make sure that the positive blood-test results of the 3TC 
plus AZT combination do translate into slower disease 
progression and/or longer survival of patients.

Glaxo has also taken the lead in testing 3TC in children in 
parallel with tests in adults, so that the drug can be 
approved for pediatric use without the delays which have been 
a major problem with other HIV drugs. Results of an early 
clinical trial of 3TC in children were presented as early as 
June 1993, at the International Conference on AIDS in Berlin.

Assuming that the North American studies which are now 
finishing confirm the European results, Glaxo is likely to 
apply for approval for 3TC in early 1995, under the FDA's 
accelerated-approval regulations. Accelerated approval is 
intended for just this kind of situation: where a drug has 
shown good results in blood tests improvements, and long-term 
"clinical endpoint" trials, designed to confirm delay in 
disease progression, are underway.

The Expanded Access Program

The expanded-access program for 3TC is still open for 
enrollment. This program is for patients who have a T-helper 
count under 300, and cannot successfully use approved 
antiretrovirals (either because of toxicity, or because those 
drugs are not working for them).

We do not know the details of what evidence is required that 
approved drugs have failed. Physicians experienced with the 
program would have the best information on this.

In the current program, combining the 3TC with AZT or other 
antiretrovirals is "strongly discouraged" -- but apparently 
not cause for expulsion from the program. Glaxo is now 
considering changing the program to allow patients who have 
progressed on AZT, but are tolerant of it, to use the drugs 
in combination. We do not know whether or not 3TC could be 
used in combination with ddI, ddC, or d4T, but cross 
resistance with ddI and ddC has been reported.

Individuals in North America who would like information on 
the open label program should have their physicians call 
800/248-9757.

[Note: AIDS writer Mark Mascolini, who attended the Glasgow 
conference, assisted with the research for this article.]


***** Vpr -- A Viral Protein is Found to Activate HIV

by John S. James

Vpr, a protein produced by HIV and found in the bloodstream 
of persons with HIV disease, has been found to activate HIV 
at low concentrations -- lower than those often found in 
patients' blood. A recent paper, by four University of 
Pennsylvania researchers, presented considerable evidence 
that Vpr may be involved in the development of HIV disease, 
stimulating latently infected cells to become productively 
infected when the body loses the ability to produce enough of 
the right antibodies to keep Vpr activity in check. Vpr also 
affects many kinds of human cells, so it could contribute to 
the damage cause by HIV, in addition to stimulating the virus 
itself. This is important because Vpr might easily be a 
target for antiviral therapy, for example by administering 
anti-Vpr antibodies. 

The evidence that Vpr may contribute to HIV disease appears 
in "Serum Vpr Regulates Productive Infection and Latency of 
Human Immunodeficiency Virus Type 1," by David N. Levy, 
Yoseph Rafaeli, Rob Roy MacGregor, and David B. Weiner, 
PROCEEDINGS OF THE NATIONAL ACADEMY OF SCIENCES, U.S.A., 
November 1994.

The researchers tested the blood of eight persons with AIDS, 
and eight others with asymptomatic HIV infection, and found 
that Vpr was present in each. The levels found were 
correlated with the levels of p24, another protein produced 
by HIV. And in three patients, who had frozen blood serum 
collected before and after the development of late-stage 
disease, the Vpr increased greatly (about ten fold), 
comparable to the increase in p24. HIV negative blood was 
tested as a control, and no Vpr was found.

Vpr was also found in the cerebrospinal fluid of five HIV-
positive patients with neurological disease; the levels were 
about the same as in the blood.

In laboratory cultures, Vpr greatly activated expression of 
HIV. The amount of the effect was dose dependent, with some 
activity found at concentrations as low as 50 times less than 
concentrations found in the blood. [The blood concentrations 
included Vpr which was bound to antibodies, and therefore 
would not stimulate HIV. These antibodies may be helping the 
body establish control of the virus after the initial primary 
infection, and keep control during the period of clinical 
latency of the illness. As immune-system damage accumulates, 
however, the ability to continue controlling Vpr may be 
lost.]

Blood serum from rabbits immunized with Vpr greatly inhibited 
the activation of HIV by Vpr, in laboratory tests. Similarly 
prepared serum from non-immunized rabbits had no effect. As 
an additional control, in another experiment, another 
substance (PMA) -- not Vpr -- was used to activate HIV; in 
this case, the serum from the immunized rabbits had no 
effect. These experiments together show that the viral 
activation did result from the Vpr.

Another test showed that Vpr produced somewhat more and 
longer-lasting viral activation than either PMA or PHA, two 
substances often used in laboratory tests to activate HIV.

The authors mentioned the possibility that Vpr might 
particularly increase HIV activity in localized areas, such 
as the germinal centers of lymph nodes, where many infected 
cells are close to each other and, as a result, the level of 
Vpr may be high.

A November 8 article in the PHILADELPHIA INQUIRER, based on 
an interview with Assistant Professor David Weiner, who 
headed the study, suggested that Vpr and antibodies to it 
might be part of a "regulatory loop" that is a major 
determinant of HIV disease progression. Dr. Weiner suggested 
that either antibodies or drugs could be used to block the 
action of Vpr.

Comment

The obvious way to find out whether this research lead has 
immediate practical value would be to prepare anti-Vpr 
antibodies and inject them into persons with HIV, to see if 
the viral load is decreased. Viral load -- plasma HIV RNA -- 
can now be measured with a simple, commercially-available 
blood test (either quantitative PCR, or branched DNA). Anti-
Vpr drugs might take a longer time to discover and develop.

A trial could use monoclonal antibodies, which are made by 
genetically-engineered cells. This approach has the 
disadvantage that it would first be necessary to find out 
exactly what antibodies are needed, and then engineer them. 
And the lack of money for producing new monoclonal antibodies 
has been a serious barrier to AIDS research in other 
projects.

It might also be possible to obtain the antibodies from the 
serum of immunized animals -- a familiar, low-tech approach 
which has long been used in medicine.


***** Untold History: Activism and Growth Hormone

by John S. James

A glimpse of a largely untold history was published November 
25 in the BAY AREA REPORTER, a gay newspaper in San 
Francisco. The article, "Activists Zap FDA Over Growth 
Hormones," by Jeff Getty of ACT UP/Golden Gate, looks at one 
treatment (recombinant human growth hormone for wasting 
syndrome) but illustrates a larger story -- the real 
determinants of whether or not critically important medicines 
ever get studied, and whether they get to doctors and 
patients who want them even when the studies have found that 
they work. The case of growth hormone shows how much 
effective medical care depends on quiet, behind-the-scenes 
work of activists from such organizations as ACT UP/Golden 
Gate, Healing Alternatives Foundation, and Project Inform in 
San Francisco, and others elsewhere.

Before activists got involved, the major trial of human 
growth hormone was failing because it could not recruit 
patients. Activists diagnosed the problem -- the trial's 
exclusion criteria, which kept out the very people who needed 
the treatment in the first place. They got the criteria 
relaxed, and the trial filled quickly.

Now the study has been successful, but red tape is keeping 
the drug from patients. A major problem today seems to 
originate in international political struggles around the 
European Economic Community, with patients being used as 
pawns. The plant to manufacture the drug is in Switzerland, 
and it is currently under construction to increase capacity. 
Apparently the FDA no longer accepts Swiss inspection, due to 
international politics, but must inspect the plant itself -- 
and it does not inspect plants under construction, leaving 
U.S. access to this particular source of drug on hold. (There 
are other potential sources, but they have problems of their 
own.) As we go to press, activists have forced meetings to 
try to get the plant-inspection problem resolved.

These kinds of problems happen all the time. What is most 
astonishing is that there is no established system in place 
to deal with them. Still, after almost ten years of the 
epidemic, no one is responsible. The impact of this 
responsibility gap not only on AIDS, but on medical research 
for cancer, Alzheimer's, and other serious or life-
threatening diseases, must be unimaginable. The opportunities 
to improve medical research for the benefit of everyone, just 
by applying the most basic principles of effective management 
which have long been developed for industry, must be immense.

The November 25 article is the first in a series by ACT 
UP/Golden Gate in the BAR AREA REPORTER. We hope to see more 
on the hidden history of activism in drug development, so 
that the public will understand the importance of this work.

Note: For a copy of "Activists Zap FDA Over Growth Hormones," 
send a self-addressed stamped envelope to: Bay Area Reporter, 
395 Ninth St., San Francisco, CA 94103.


***** Computer Communication for AIDS Agencies -- HandsNet 
      AIDS/HIV Forum

by Tadd Tobias and John S. James

A new computer communication system, designed for government 
and nonprofit AIDS agencies, was announced October 31 at the 
National Skills Building Conference in Atlanta. This project 
uses HandsNet, already a major tool for electronic 
communication among nonprofit organizations, for a new 
project to improve communication and coordination among 
agencies working in AIDS. About two dozen agencies and 
organizations have joined so far, including (partial list in 
alphabetical order): AIDS Action Council, AIDS Project Los 
Angeles (Sacramento office), AIDS Treatment News, Beth Israel 
Hospital (Boston), Center for AIDS Prevention Studies, 
Centers for Disease Control National AIDS Clearinghouse, 
Funders Concerned about AIDS, Gay Men's Health Crisis, Kaiser 
Family Foundation, National Minority AIDS Council, Office of 
the National AIDS Policy Coordinator, Project Inform, Robert 
Wood Johnson Foundation, San Francisco Black Coalition on 
AIDS, San Francisco General Hospital AIDS Program, and Upper 
Midwest AIDS Coalition. Also, 51 Ryan White Special Projects 
of National Significance (SPNS) have now been funded to come 
online, and in addition the National Community AIDS 
Partnership will fund several sites.

Hopefully, "The AIDS/HIV Forum will eventually link thousands 
of AIDS service organizations throughout the United States 
with the latest prevention, policy, treatment, funding and 
resource information. HandsNet will provide support and 
training to facilitate the flow of information between 
participating organizations." (Quote from October 31 press 
release from the Henry J. Kaiser Family Foundation.)

The Kaiser Family Foundation funded this project with a 
$300,000 two-year grant, and Apple Computer provided $50,000 
in equipment. This article will outline how the system is 
used, note its principal strong points and limitations, and 
examine the controversy over whether this project has 
unnecessarily duplicated other work.

Background: What is the HandsNet AIDS/HIV Forum?

HandsNet is a nonprofit organization which provides a 
computer communication system designed for human-service 
agencies, in areas such as housing, education, rural issues, 
legal services, substance abuse, and other health services. 
HandsNet has over 3,500 users; and many forums already exist 
for agencies in various fields, but so far this system has 
had little use in AIDS. The AIDS/HIV Forum is a new project 
to improve communication and information flow among AIDS 
agencies, by providing them with training and technical 
support to facilitate their use of HandsNet, and to 
coordinate the development of information resources on that 
network. What is now being done for AIDS is similar to what 
has previously been done for other human-service areas.

HandsNet provides electronic mail between its users, who can 
also send and receive mail to non-HandsNet users on the 
Internet; it allows users to create their own mailing lists, 
to automatically distribute email to anyone reachable through 
the Internet. Also, the various forums (such as the AIDS/HIV 
Forum) contain public areas in which users can post 
information. This allows agencies to post action alerts, 
discuss policy issues, explain their projects, network with 
people in the same or other fields, etc. And it also means 
that most of the information in these public areas is 
contributed by others working on the front lines of the 
field, increasing its currency and relevance.

Many other systems provide similar email facilities. HandsNet 
is especially easy to learn to use, because it does an 
unusually good job of shielding users from computer details 
which they do not want or need to know about. HandsNet also 
provides an effective and flexible way of posting information 
coherently in public areas; and it includes a keyword search 
to find any reference to a topic of interest, no matter where 
it was posted.

An important advantage of HandsNet is that it is already 
heavily used by nonprofit human-service agencies. HandsNet 
encourages communication across the different interest areas 
-- for example, between AIDS and other health issues, 
children and family, housing and community development, 
hunger and nutrition -- by sending a Weekly Digest (a 
selection of policy, program, and resource articles posted 
that week) to all HandsNet members. By scanning this weekly 
summary -- usually about four single-spaced printed pages in 
length -- one can learn what is happening now in human-
services areas other than one's own, and easily communicate 
with those involved. (Now that AIDS has a presence on 
HandsNet, activists in other areas are being exposed to AIDS 
news and issues they might not otherwise have seen.)

John Laird, a former mayor of Santa Cruz, California, who has 
also served as executive director of the Santa Cruz AIDS 
Project, has been hired by HandsNet to coordinate the 
development of the AIDS/HIV Forum.

Individuals can get accounts on HandsNet -- you do not have 
to be an organization. However, HandsNet is designed for 
nonprofit agencies; individuals seeking AIDS information by 
computer will generally find other systems more suited to 
their needs, and less expensive. 

What's On the HandsNet AIDS/HIV Forum?

On November 23 we spent about an hour exploring part of the 
AIDS/HIV Forum. Here are some of the items which caught our 
attention. Since they included email addresses, the people 
involved can be reached by electronic mail from HandsNet or 
from other systems connected to the Internet.

* Background on the AIDS/HIV forum itself, including a list 
of the 39 people at more than two dozen organizations 
currently online, and explanations of how to post different 
kinds of messages in different public areas.

* A Treatment Forum containing the last two years' issues of 
AIDS TREATMENT NEWS, treatment fact sheets and other 
information from Project Inform, and other treatment 
information which is now being prepared and added. "The 
Treatment Forum will be managed by the National AIDS 
Treatment Information Project, funded by a Kaiser Family 
Foundation grant and consisting of staff members from 
Boston's Beth Israel Hospital, the Gay Men's Health Crisis in 
New York, and the AIDS Program at San Francisco General 
Hospital...(It) will be part of a larger national project, 
which will include the development and distribution of 
treatment information through a fax-back system as well as 
these electronic means."

* Background on TAN (the Treatment Action Network), Project 
Inform's "national network of activists who contact elected 
officials, government administrators and drug companies on 
critical HIV treatment and research issues." (For more 
information, call Tom Wonsiewicz, TAN coordinator, at Project 
Inform, 415/558-8669 ext. 205.)

* A Policy Forum, maintained by the AIDS Action Council. It 
includes advocacy and coalition-building tips for AIDS 
service organizations and for community-based organizations. 
It has sections for Budget, Housing, Care, Research & 
Treatment, Prevention, Women's issues, Ryan White, Civil 
Rights and Immigration, Federal Agencies, and State Policies. 
There is a weekly AIDS Action Update, and an Election Update.

* The Republicans' Contract with America. The HandsNet Weekly 
Digest for November 25 was replaced by a summary of 
information about the Contract with America which is 
available on HandsNet. An overview, and four analyses of 
various aspects, are listed -- as is a December 13 telephone 
conference on welfare reform. There is a growing concern that 
"low-income households would be the clear losers, as they 
would gain little from the Contract's tax proposals and bear 
most of the burden from the resulting budget cuts." [We also 
note that people with AIDS, cancer, and other serious 
diseases are especially affected. Private insurance 
increasingly finds ways to dump those with serious illnesses 
onto Medicaid and other public health care, which will be 
targeted to finance simultaneously huge tax cuts, deficit 
reduction, and major prison and military spending. Already 
many people with AIDS -- probably thousands -- have been 
forced to live on the streets; the new proposals are likely 
to make things worse.]

* The November 19 HandsNet Weekly Digest. It notified readers 
of a new report on AIDS in New York City -- now the leading 
cause of death of city residents between the ages of 25 and 
44 -- with analysis concerning children, orphans, recent 
immigrants, and the homeless. Non-AIDS issues include: summer 
youth employment; new child and family resource centers now 
being established; where to go with health-care reform, 
including state programs; the new Congress and housing 
programs; agriculture worker pesticide protection; domestic 
violence; expanding free electronic access to government 
information; substance abuse treatment; and a California 
guide on how to get food, health, and other services for low-
income people.

* The AIDS Daily Summary, written by the U.S. Centers for 
Disease Control and summarizing AIDS news stories each 
business day. (This useful service is available on many 
computer-communication systems.) Here we found references to 
international press coverage on the new information about the 
combination of AZT plus 3TC, which will lead us to the 
original articles. And we learned of a November 21 WALL 
STREET JOURNAL report that Russia's consideration of a law to 
test all foreigners entering the country for HIV has caused 
"a flood of cancellations of trips," with an estimated 
decrease in tourist and business trips of up to 40 percent if 
the bill becomes law.

We believe that the HandsNet AIDS/HIV Forum addresses an 
urgent need for better coordination among AIDS agencies. But 
in order to be successful, it will need to achieve a critical 
momentum of use, since new people will join only if those 
they need to communicate with are already there. Fortunately 
electronic mail itself is now achieving this momentum in AIDS 
work, with many, perhaps most, AIDS professionals and 
activists now having an email address on some system. This 
makes it easier for HandsNet, since the big initial hurdles 
of equipment, setup, and training have already been crossed.

HandsNet can be used with either Macintosh, Windows, or MS-
DOS compatible computers.

Limitations, Disadvantages

* Cost. HandsNet is more expensive than other systems; the 
minimum fee is $35 per month for one user's account, and most 
organizations actually spend about $35 to $40. (Organizations 
with more than one user can get substantial discounts.) Users 
get two bills: One is from HandsNet, and the other is from 
CONNECT, the company which provides the computer and software 
with which HandsNet runs. Cost goes up if one spends more 
than two hours per month online, or downloads more than about 
20 single-spaced pages of information per month. The system 
is designed to allow users to minimize online time, so the 
average user's cost is not much more than the minimum.

* Limited Internet access, at least for now. HandsNet users 
can send and receive email through the Internet; this means 
they can also subscribe to electronic mailing lists. But they 
cannot use Internet services such as World Wide Web or Gopher 
-- let alone set up their own information on these services 
for other people around the world to use. These Internet 
services are rapidly becoming more important, and they are 
available from other vendors for much less than the $35 per 
month minimum for using the HandsNet system. But it means 
opening another account, and setting up and learning 
different software.

HandsNet plans to offer World Wide Web and Gopher access by 
mid 1995. But at current prices for online time and 
downloading of information, using the Internet through a 
HandsNet account would be considerably more expensive than 
alternatives. If Internet use turns out to be too expensive 
or otherwise not feasible, then the AIDS community could move 
onto HandsNet and still end up behind the computer-
communication learning curve in two or three years.

* Proprietary software. HandsNet can only be used with 
CONNECT's proprietary software -- not with the standard 
terminal programs which most systems use. This can be 
inconvenient -- for example, when checking one's email while 
traveling.

Controversy: Duplication of Effort?

There has been controversy about the decision by the Kaiser 
Family Foundation to start a new AIDS communication system, 
instead of building on the work which had been done before. 
Many of those familiar with computer communication in AIDS 
think that the new system should have been built around AEGIS 
(AIDS Education General Information System) a low-budget 
international network which is widely considered the best 
single source of AIDS information for individuals. Sister 
Mary Elizabeth, who started the AEGIS system, expressed the 
concerns of many of the AIDS activists who have been using 
computer communication for years:

"HandsNet has received substantial funding to develop 
services which are otherwise available free of charge. 
HandsNet and CONNECT will benefit by having more paying 
customers, but what happens when the two-year Kaiser grant 
ends? Will the AIDS/HIV Forum continue to offer organized and 
moderated information and conferencing resources? Or will it 
be left to volunteer effort to maintain the Forum?

"The end result, the quality and accessibility of 
information, will be largely dependent on the ability of 
AIDS/HIV Forum organizers to secure ongoing funding to 
maintain and expand outreach and training, as well as 
information management. You can bet that HandsNet and CONNECT 
won't foot the bill. I'm certain John Laird will do a good 
job, to the best of his ability, but it is a gamble that his 
position will continue. I don't understand why funds weren't 
dedicated to further develop existing AIDS information 
systems which grew out of the grassroots response. These 
systems have an excellent track record and user base, and 
operate for much less expense than do commercial and 
government ventures.

"For less than $20,000 per year, AEGIS makes high-quality 
AIDS information available through state-of-the-art computer 
technologies. A $300,000 grant would have gone a long way, 
for years to come, to further expand our world-wide network 
and build on our active user base of over 1,500 persons. It 
would only take $25,000 to develop full Internet access for 
AEGIS, and $15,000 a year to support it thereafter. Instead 
of spending $300,000+ over two years for an inferior service, 
doesn't it make sense to spend that money more wisely by 
cooperating with existing AIDS information providers to 
support their ongoing efforts for the coming decade?

"How will community access be assured? People who need the 
information the most don't have the money to subscribe to a 
commercial system, especially when the free services 
currently available offer much more comprehensive information 
in a user-friendly, supportive environment."

Comment

Computer communication is moving and changing so rapidly that 
no one can predict what will be most successful. If it had 
been our choice, we might have chosen the Internet and AEGIS 
as the basis for an AIDS communication system, instead of 
HandsNet.

But there are also strong arguments for choosing HandsNet. It 
has a proven track record in supporting agencies and working 
groups; AEGIS evolved more for providing AIDS information to 
individuals. Agencies are usually most interested in policy, 
program, and funding information, as well as easy-to-learn 
email and other facilities.

Also, John Laird noted, "The basic points for me are that we 
are designed to serve AIDS service agencies and provide an 
across-the-board array of information in an easy-to-use 
system... One of the strengths of the whole project is the 
capacity building of AIDS organizations. They are trained as 
electronic publishers, adding a capability that none 
presently has... When the grant runs out, this capacity will 
be what carries the network -- as it is these organizations, 
not HandsNet, that place the information online. Also, one of 
the strengths of HandsNet is the ability to provide toll-free 
support and phone tours to new groups coming online to build 
their knowledge."

HandsNet has a point-and-click "graphical user interface," 
which many people prefer. AEGIS will soon have a graphical 
user interface. [Our own view is that if a system is well 
designed for its users, a graphical interface is a matter of 
personal preference, not a fundamental advance.] Both 
HandsNet and AEGIS have excellent keyword search facilities.

Our biggest concern is that the cost of HandsNet, over $400 
per year for a single account no matter how little it is 
used, may limit the AIDS/HIV Forum to better-funded agencies. 
In theory, this cost can be shifted from other expenses such 
as overnight express, faxes, and periodical subscriptions. 
And email uses staff time very efficiently; one just types a 
message and off it goes, without the need to prepare an 
envelope, or feed papers through a fax. But local, 
underfunded agencies that rely mainly on volunteers may not 
be able to justify the expense this way.

There are now projects in several cities to develop free AIDS 
computer systems with email and full Internet access. These 
may become the communication medium for smaller agencies, as 
well as individuals. If a two-tier system develops, it could 
increase the problem of well-funded, well-connected agencies 
and professionals talking mostly to each other, losing 
contact with the grassroots support they need to be 
successful.

Computer communication is changing very rapidly, and no one 
knows which software will prove useful in the future. 
Therefore, experimentation is necessary; there is no such 
thing as an ideal choice today. We strongly support both the 
HandsNet AIDS/HIV Forum, and AEGIS, and other computer 
communication systems now being used or developed for AIDS 
work. These are the practical choices today, and no one knows 
what will ultimately prove best.

For More Information

(1) For more information about the HandsNet AIDS/HIV Forum, 
call John Laird at HandsNet, 408/257-4500. Or send email to 
him at hn3187@handsnet.org.

(2) For more information about AEGIS, you can log on without 
prior arrangements by calling its central hub in San Juan 
Capistrano, California, 714/248-2836 (modem). Or send email 
to Sister Mary Elizabeth at mary.elizabeth@aegis.hivnet.org, 
or call her at 714/248-5843. AEGIS also has "mirror" systems 
in a number of other cities, allowing free access with a 
local call; you can get a current list by logging on to the 
central system at the number above.

We will not list the many AIDS-related databases offered by 
AEGIS, because this system deserves an article of its own.

AEGIS has done excellent work with a small budget; we urge 
those who can to send contributions, which can be mailed to: 
Sisters of St. Elizabeth, ATTN: AEGIS Network, P.O. Box 184, 
San Juan Capistrano, CA 92693-0184. Make checks payable to 
Sisters of St. Elizabeth (tax deductible), with AEGIS in the 
memo field.

(3) For additional pointers to AIDS information available by 
computer, see the 14-page "Guide to Selected AIDS-Related 
Electronic Bulletin Boards and Internet Resources," published 
by the U.S. CDC National AIDS Clearinghouse. To order a copy, 
call 800/458-5231; to get through the voicemail,  press '1', 
then '2', then '3' (this may change). Ask for publication 
number B-313.


***** Threats to Ryan White, AIDS Funding: Call for 
      Information

On November 22, the WASHINGTON POST mentioned a Republican 
proposal for "dismantling the Ryan White program to care for 
AIDS patients (and) reexamining the Americans with 
Disabilities Act." The San Francisco-based Mobilization 
Against AIDS called the reporters, but they could not 
identify the staff person they talked to, nor the member of 
Congress for whom that person worked.

The Ryan White CARE Act supports clinics, drug assistance 
programs, counseling, and many other kinds of services, in 
heavily impacted cities and states. In some areas, it is the 
only AIDS funding available. It has had strong bipartisan 
support in Congress. Its current five-year term will expire 
in September 1995; until it is reauthorized, organizations 
cannot apply for new funding, threatening continuity of 
service.

If you know of any threats of major funding cuts in AIDS 
research, prevention, or care, which have not already been 
widely publicized -- or, on the other hand, about proposed 
improvements in medical research and drug development, such 
as reducing the "entry cost" for innovative treatment ideas 
to reach the market -- please contact AIDS Treatment News, 
800/TREAT-1-2, or P.O. Box 411256, San Francisco, CA 94141, 
or aidsnews@igc.apc.org.


***** 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:
   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.

