AIDS TREATMENT NEWS Issue #392, June 27, 2003
phone 800-TREAT-1-2, or 215-546-3776

CONTENTS

** Major Scientific AIDS Conference, Paris July 13-16; Reports
Online
Scientists will present results of basic medical research and of
HIV drug clinical trials at the International AIDS Society
conference in Paris in mid July.

** New Protease Inhibitor Atazanavir (Reyataz(TM)) Approved
A new protease inhibitor has much less effect than others in
raising blood levels of cholesterol and triglycerides, probably
reducing some health risks -- but early data suggests that this
benefit may not translate into reduced lipodystrophy. There are
other side effects, and doctors and patients will need to be
especially careful about drug interactions.

** Federal AIDS Policy Emergencies
Federal policy problems and changes urgently need attention.
Here we note some of what is happening in Social Security
disability, ADAP, Medicaid, Medicare, prevention, and basic
biomedical research.

** AIDS, Computers, and Organizing: Part I, Toward a Revolution
in Fundraising?
(A Report from the Planetwork Conference)
This month I attended Planetwork, a three-day meeting in San
Francisco on new online tools for social organizing, to improve
civil society and allow people around the world to work together
for common projects and goals. Over 100 presenters told of many
important experiments and a few spectacular successes -- mostly
unknown in the AIDS world today. These advances will change how
we live and work, and AIDS activists and organizations will
benefit by knowing about them and taking a lead in exploring how
to use this work to help solve problems we face. This article is
the first of three reports on these developments that AIDS
TREATMENT NEWS will publish over the next few months.


***** Major Scientific AIDS Conference, Paris July 13-16;
Reports Online

The 2nd IAS Conference on HIV Pathogenesis and Treatment will
take place July 13-16, 2003, in Paris. This conference is
organized by the International AIDS Society (IAS), which also
puts on the International AIDS Conference, which happens in
even-numbered years (the next one will be near Bangkok,
Thailand, in July 2004).

The Paris conference has been called "THE international forum
that brings together scientists and clinical researchers working
on HIV/AIDS from both the developed and developing world,
forging alliances to jointly address the most pressing issues in
the combat against this global emergency" (quote from Professor
Joep Lange, chairman of the International AIDS Society). [Note:
the International AIDS Society should not be confused with the
International AIDS Society-USA, an unrelated organization.]

The final program of the Paris conference was posted June 30 at
http://www.ias2003.org/ . The 360-page document (a 3 megabyte
file) can be searched on your computer for a keyword or phrase,
such as a medical term, drug name, or presenter's name.

Two official Internet providers for the conference are noted on
page 15 of the program:

* Kaisernetwork.org will provide Webcasts of the plenary talks
and some of the other major sessions. You can find them at:
http://www.kaisernetwork.org/paris2003
or through the IAS Web site above.

* Medscape will provide conference coverage and continuing
medical education programs based on this conference. See:
http://www.medscape.com/hiv . Note: free registration is
required.

On June 30 Medscape said its coverage will include "daily news
and expert commentary; an executive summary of the conference
that will be published within one week of the conference's
close; and a series of approximately 15 topical reviews, which
will be available to physicians for continuing medical education
credit, that will be published within 3 weeks following the
meeting. Slide kits and slide-based presentations of selected
conference sessions will also be published on Medscape at that
time."


***** New Protease Inhibitor Atazanavir (Reyataz(TM)) Approved

On June 20 the FDA approved the new once-a-day protease
inhibitor atazanavir (brand name Reyataz), manufactured by
Bristol-Myers Squibb. Atazanavir has little effect on the blood
lipids cholesterol and triglycerides, and on May 13 the FDA's
advisory committee of outside experts had unanimously
recommended approval (see AIDS TREATMENT NEWS #391, May 30,
2003). Atazanavir can be taken as two pills once daily with
food. In patients who have already had extensive HIV treatment,
atazanavir may need to be "boosted" with a low dose of ritonavir
(Norvir(R)) to maintain atazanavir blood levels (a reduced dose
of atazanavir is recommended in this case; see Web site below to
check current information). As with all other current
antiretrovirals, atazanavir must be used as part of a
combination regimen.

The advisory committee had some concern that the FDA was not be
able to review all the data on treatment-experienced patients
before the legal deadline for drug approval.

On June 20 Bristol-Myers Squibb, the manufacturer of atazanavir,
issued a press release including the following cautions:

"Do not take REYATAZ if you are taking the following medicines:
ergot derivatives, Versed(R), Halcion(R), Orap(R), Propulsid(R),
Camptosar(R), Vascor(R), Crixivan(R), Mevacor(R), Zocor(R),
Rifampin, St. John's wort, AcipHex(R), Nexium(R), Prevacid(R),
Prilosec(R) or Protonix(R). [Not a complete list -- JSJ] Do not
use Viagra(R) while you are taking REYATAZ without first
speaking with your healthcare provider. Discuss all
prescription, non-prescription and herbal products you are
taking or plan to take with your healthcare provider.

"Increases in indirect bilirubin (bilirubin is made by the
liver) have been reported in patients taking REYATAZ. This may
result in yellowing of the skin and/or eyes. These symptoms
usually go away after you stop taking REYATAZ.

"Changes in the way your heart beats may occur when taking
REYATAZ. If you get dizzy or lightheaded these could be symptoms
of a heart problem. An increase of lactic acid in the blood
(lactic acidosis), which can cause death, has been reported in
patients taking REYATAZ with other anti-HIV medicines called
nucleoside analogues. In some patients taking protease
inhibitors, increased bleeding (in patients with hemophilia),
diabetes and high blood sugar have occurred. If you have liver
disease, including hepatitis B or C, your liver disease may get
worse when you take anti-HIV medicines like REYATAZ."

For a current copy of the atazanavir "labeling" (information for
doctors), see the full prescribing information at
http://www.reyataz.com/ . Always use a current copy of the
prescribing information, especially for a newly approved drug,
since it will change as new information becomes available.


***** Federal AIDS Policy Emergencies

by Kate Krauss and John S. James

Members of ACT UP Philadelphia have begun to track the numerous
federal cutbacks and policy changes affecting U.S. AIDS services
and are assembling a list in a single document. Crucial programs
such as Social Security disability, ADAP, Medicare, HIV
prevention, and biomedical research are all currently under
fire.

We are preparing lists of organizations that publish quality
action alerts on these issues, and would appreciate
recommendations.

ADAP (AIDS Drug Assistance Program)

Fifteen states including New York have instituted waiting lists
or other access restrictions; six others are expected to
implement restrictions soon. Activists estimate that at least
12,000 people with HIV who need this program cannot access it
this year -- in many instances this means that people who need
HIV treatment will not be getting it at all. Unless Congress
passes an emergency-spending bill for the ADAP, the situation
will only grow worse until March 31, 2005. See AIDS Treatment
Data Network for more information http://ATDN.org/

New Social Security Disability Definition: Public Comments
Deadline July 8

The definition of who is "disabled" due to HIV infection was
last revised in 1993, and is being updated to reflect modern
treatment. You can see the proposed definition (and submit
public comments) by visiting:
http://www.ssa.gov/disability/newrules_immunesystemdisorders.htm
You can also read comments already submitted by others.

[Note: If this link does not work, try visiting
http://ssas.com , then click on Connect Board, then click on
Listings, then scroll down to Immune System listings.]

Lambda Legal has asked doctors and lawyers experienced with
HIV to sign on to its 18-page letter to the Social Security
Administration; others can refer to this letter in their public
comments (refer to the "HIV-Legal Joint Comments"). The letter
suggests changes to the proposed new rules, for example to
give examiners guidance on the side effects of medications,
to not require certain laboratory tests no longer commonly used,
to accurately reflect the consequences of co-infection with
hepatitis C, to tell examiners that lifestyle and adherence are
not necessarily to blame if an antiretroviral regimen fails, to
include CNS lymphoma in the lymphoma listings, to include herpes
zoster, CD4 count under 100, and several other conditions, and
to acknowledge that treatment now exists for several
opportunistic conditions that were untreatable in 1993, so they
should be considered disabling only if treatment fails. For more
information contact attorney Hayley Gorenberg at Lambda Legal,
212-809-8585 or hgorenberg (at) lambdalegal.org

We have heard from others that the disability revision is a
legitimate effort to update the rules for modern conditions --
but raises broader concerns. One problem is that government works
through lists of diagnoses, and tries to save money. But what we
most hear from individuals is that they can work either part
time or full time, but do not know how long that will continue.
They need to be able to go back to work without losing their
benefits, and then being destitute and without medical care if
they lose their job.

Another problem is that the new rules may give officials many
more occasions to call people in for hearings that can revoke
their benefits. Such procedures have been abused in the past to
remove people who are clearly disabled, just to save money.
Also, a large increase in hearings and revocations would
complicate financial and medical planning, which can be very
difficult already.

Medicaid

Medicaid provides healthcare, including prescription drugs, for
low-income, elderly, and disabled people including about 260,000
people with AIDS. The largest federally funded healthcare
program for people with AIDS, it is also typically the second
largest state budget item after education. But the depressed
U.S. economy has reduced tax revenues and many states are
running huge deficits.

In response, dozens of states are attempting to save money by
lowering the maximum personal income allowed for eligibility,
dropping hundreds of thousands of "optionals" (people who meet
slightly relaxed eligibility requirements) from Medicaid rolls,
reducing access to prescription drugs, and eliminating access to
nursing home care and other services. In Texas, for example,
disabled patients cannot earn more than $552 per month to
qualify for the program. In South Carolina, the governor is
planning to reduce the maximum number of prescriptions per month
from 4 to 3. In California, the governor attempted to de-fund
hospice care this year until aggressive public policy advocacy
by the hospice community restored the money. Many states have
instituted highly restrictive Medicaid drug formularies,
effectively putting expensive drugs out of reach for many people
with AIDS.

Advocates succeeded in pushing Congress to disburse $10 million
directly to Medicaid through a temporary increase in the Federal
Medical Assistance Percentage, but that is a small part of the
shortfall.

In addition, President Bush is aggressively advocating for a
plan that would limit federal contributions to the program
regardless of a state's costs. Such a plan would encourage
states to further reduce benefits and establish obstacles to
patient care in the interests of cost containment. A state-by-
state list of Medicaid cuts is available from TIICANN at 202-
588-1775, or by emailing Tom McCormack: tomxix@....
Families USA has information on both Medicaid and Medicare,
http://www.familiesusa.org/

Medicare

Medicare provides health care (but not prescription medications)
for many people with AIDS. Prescription coverage plans that have
been approved by Congress will not be fully implemented until
2006 and will require recipients to spend $3,500 (in the House
version) to $3700 (in the Senate version) out of pocket before
catastrophic coverage kicks in (either 90% in the Senate version
or 100% in the House version). (People with incomes of $60,000
or higher would have to pay more out of pocket before
catastrophic coverage takes effect.) U.S. drug regimen costs for
people with AIDS start at about $10,000 and can total $30,000 or
more per year. In states where the AIDS Drug Assistance Program
is weak and patients do not also qualify for Medicaid, these
costs will mean that people with AIDS cannot afford their
medications. A compromise between the House and Senate versions
of the bill is expected to be reached in conference committee
later this summer.

Families USA offers important updates on Medicare:
http://www.familiesusa.org/ . The Kaiser Family Foundation also
has an important information source on Medicare:
http://www.kff.org

Prevention

The U.S. Centers for Disease Control (CDC) instituted far-
reaching changes to its prevention policy and funding priorities
in April 2003 in an effort to remove barriers to testing and
care. Programs to test more people, get those who are HIV-
positive into treatment and care, and help them prevent
transmission to others are widely supported.

Unfortunately the CDC will greatly reduce or discontinue funding
support groups, safe sex workshops, and other programs to help
those who are high risk and HIV-negative protect themselves.
Organizations that provide primary prevention, including many
groups that target people of color, will get much less funding
under this plan.

The CDC now promotes widespread, routine testing in doctors'
offices, prisons, and among pregnant women -- but will no longer
promote specialized counseling for those who are tested. And
while this testing will find more people who test positive, the
agency has not allocated more money for counseling and care.

The CDC has also changed its practices under pressure from
conservative critics who do not like gay-friendly AIDS
organizations. Last fall, the CDC audited several groups that
participated in a protest against HHS Secretary Tommy Thompson
at the 2002 Barcelona International AIDS Conference. The CDC
cited federal funding of the groups to justify the audits, but
many activists saw them as retribution for the protest. New
York's Gay Men's Health Crisis and the African Services
Committee were among those audited.

The CDC is also cracking down on AIDS organizations that use
sexually explicit materials, and on June 13, 2003 sent a letter
to San Francisco's 19-year-old Stop AIDS Project accusing the
group of breaking a federal law that prevents federally-funded
organizations from encouraging or promoting sexual activity.
Ironically, the organization had recently passed audits (also a
result of pressure from right-wing conservatives) by the Office
of the Inspector General and the CDC. The audits determined that
Stop AIDS programs were adequately supervised by the San
Francisco Health Department and were in keeping with community
standards.

Conservatives are also influencing scientific research at the
CDC: research grant applicants are now discouraged from using
standard terms to describe the populations and behaviors they
plan to study (men who have sex with men, anal sex, etc.).

Serious Cut in Basic Biomedical Research

In a last-moment bureaucratic move, the Bush Administration's
Office of Management and the Budget (OMB) ordered the National
Institute of Allergy and Infectious Diseases (NIAID) to spend
$233 million on a bulk purchase of anthrax vaccine. The result
is that over $200 million must be taken away from basic research
in HIV, other infectious diseases, and immunology. Congress had
not appropriated funds for the vaccine purchase, apparently
because it thought that this money should not come from the
NIAID research budget but from other government channels, and
the Administration had not requested the money in those budgets.

Even without the diversion, only about 25% of NIAID grants
judged scientifically worthy would have been funded. With $233
million taken out, only 18% will be funded. No one knows ahead
of time which of the projects may turn out to be critically
important.

The pharmaceutical industry does very little basic medical
research because of lack of commercial incentive. Instead, it
relies on the Federal government to fund researchers at
universities and other institutions. As a result, the studies
rejected due to the diversion of funds will be delayed or not
done.

NATURE, considered by many to be the world's most prestigious
scientific journal, called this case "a prime example of how
centralized control could undercut the NIH's mission of
protecting the health of the United States and the world"
("Biodefence Takes Its Toll," NATURE, June 5, 2003, issue #423).


***** AIDS, Computers, and Organizing: Part I, Toward a
Revolution in Fundraising?
(A Report from the Planetwork Conference)

by John S. James

Recently I attended Planetwork, a three-day conference in San
Francisco on new ways of using computers and online technology
to help people work together for a better future(1). Some new
communication and organizing tools, many available now, could
make a big difference in AIDS and health. I have a background in
computers and was the only AIDS writer there, and will report to
the community on some of this new work, and why it is important
for us.

Over 300 people, some from as far as London, heard 100
presenters, many of them well-known leaders in the computer
industry, in three parallel meeting tracks. The conference was
supported by registration fees and by industry partnerships,
mostly with small technology companies.

This article will look at software for extending existing social
networks, as a way to help people around the world work together
on common goals and projects -- even when some of them have no
computer, email, or Web access.

Online Social Networks -- and Fundraising

A key theme of the conference was establishing trusted
communication online, to assist existing networks of friends and
colleagues who already work together and trust each other. A
semi-official "white paper" for the conference ("The Augmented
Social Network: Building Identity and Trust into the Next
Generation Internet") explored some of these ideas(2). "Trust" in
this case refers to personal judgment, especially knowing
someone and having confidence that you can recommend him or
her to associates for a working relationship -- not to computer
security against technical attacks. [And it does not at all refer
to the so-called "trusted computing" concept, a major project
of Microsoft and others to encrypt every email and document in
your computer so that government and corporations can control
what you do with it. For more information on that effort see John
Markoff, "A Safer System for Home PC's Feels Like Jail to Some
Critics," NEW YORK TIMES June 30, 2003; or see Richard Stallman,
"Can You Trust Your Computer,"
http://www.gnu.org/philosophy/can-you-trust.html ]

To show what augmented social networks could mean for AIDS, here
is a fundraising scenario we expect to be happening within a few
years. The software required either exists today or could easily
be written. What will take time is for people to learn about
this possibility and start using it together.

For this example we will take a hard problem -- raising money
for local AIDS and health clinics and other grassroots projects
in developing countries. But the same tools could work for many
purposes.

It is well known that small amounts of money can save lives or
otherwise make a big difference in poor countries (see the new
documentary film, A CLOSER WALK, http://www.acloserwalk.org/).
Today almost all money donated goes through governments, big
nonprofits or churches, or other large organizations. For some
projects this is the best or only way to proceed. But many
people would be more willing to give directly through a personal
connection. (We suspect that these two kinds of giving will be
more synergistic than competitive -- that if donors had good
ways to give directly they would become more personally
involved, leading to more political will to support government,
nonprofit, and church programs, rather than less.)

The problem today is that the people and personal networks who
can donate are far away, both geographically and socially, from
the people and personal networks where their money could do the
most good. Most potential donors living in the U.S., for
example, do not know anyone in any developing country --
especially in remote villages where many of the people live, and
where a little money could often go farthest. And most donors
today do not personally know who is really doing the most
important work, but must rely on public relations and carefully
crafted images, which they know very well are unreliable --
discouraging commitment and contributions. On the other side,
those who have the first-hand knowledge usually have no good way
to reach many donors and establish credibility.

How could computers help? Imagine that a few years in the
future, you hear that $25 could save a life in poor areas
through health care or famine relief (as is the case today).
Perhaps you want to make a small contribution directly to an
organization or person on the scene -- for example, a local
group somewhere in Africa that is doing superb work but may not
be part of any big charity or international organization. You
want to contribute based on the personal recommendation of
someone you trust. Usually there are people you trust -- but
none of them are at the scene, so they cannot help you directly.

So instead of making dozens of phone calls to try to find a
chain of recommendations that reaches from your personal network
into villages in Africa, you go to a social-network Web site
where basically anyone in the field (global AIDS or health in
this case) could publish a profile for themselves -- including a
list of people or groups they recommend.

For example, since you are reading this newsletter, perhaps you
trust me. I do not know who in poor countries could best use
your contribution -- but I do know well-regarded doctors,
activists, and others who work or volunteer there, whose
judgment and recommendations I trust. Perhaps none of them know
what is really happening on the ground in a particular area, but
they are closer than you or I, and will know people closer
still.

Health activists and professionals who work regularly in
developing countries could create a profile of themselves on a
social-network Web site for international AIDS, or international
health. Their profile would include a list individuals and
organizations that they recommend as doing good work -- and who
could also put their own profiles on the site, where they list
others they recommend. Those listed need not have access to
computers, nor speak English or whatever language is used on the
site, because their colleagues who want to recommend them and
help raise funds could work with them to prepare and submit
their profiles. These profiles might include specific projects
that need doing, with a budget for each.

At the simplest level, the way social-networking programs work
is that you can click a link on anyone's profile to see their
network of friends or trusted colleagues. Then you can click on
any of those profiles to see that person's network, etc. Just
with this much, you could start with one person or several
people you trust, then check through the networks partly by
trial and error to get closer to the kind of project you are
looking for -- either geographically (Africa, for example), or
by other categories. But software tools (discussed below) could
greatly help.

Networks of personal recommendation have always been important
in almost every human activity. But usually it is difficult in
personal networks to go through a chain of more than two or
three referrals -- especially across international borders, time
zones, and language barriers, or into regions that have no
telephones, computers, or other modern communication. Even when
communication is possible it is not feasible to make dozens of
phone calls in different languages to explore social networks
and establish a trusted chain of referrals, all for the sake of
perhaps a $25 contribution.

But with a social-network Web site, potential donors or anyone
else can explore these personal and professional networks
whenever they want -- without necessarily setting up their own
profile or making any other arrangements in advance. They can
start by finding one or more people they trust who have profiles
on the site, and then look for chains of trusted referrals to
projects they want to support.

I would guess that in a specialized area like global AIDS, the
average length of the shortest personal-referral chain from, for
example, an interested U.S. citizen to a clinic or other project
in a village in Africa, would be less than the proverbial "six
degrees of separation," but more than the two or so degrees that
can comfortably be managed informally. The first time a
potential donor uses this system, he or she might spend an
evening exploring the links through these social and
professional circles, looking at perhaps several dozen of the
thousands of profiles on the site, to find one or more chains of
perhaps three, four, or five connections that work for them --
ending with an organization or individual they want to help.
Since part of the work of setting up the Web site would be to
provide a way that funds could be transferred legally,
inexpensively, and conveniently, with a few keystrokes the
donation could be done. Each recipient organization, individual,
or agency would have a way to be notified that the contribution
had arrived and credit was available; that would be part of
their profile. They would also be able to contact and thank the
donor and tell how their contribution was used, unless the donor
asked not to be identified publicly.

Advantages to Consider

* In AIDS we already have networks built on personal trust and
long-time working relationships, and these function well. But we
need better ways to connect the separated networks, so that they
can coordinate better when appropriate. Social-network software
-- especially databases of personal and professional recommendations,
within a given field or for a particular
purpose -- could support larger projects and activities, without
the problems of a centralized, top-down command structure (which
has not worked well in AIDS).

* Speakers at the Planetwork conference were quite familiar with
academic studies of social networks, at Stanford University and
elsewhere. One of the findings has been that important benefits
like learning about a new job are more likely to come from loose
social connections (for example, an acquaintance of a friend)
than from tight connections (being part of the same corporation,
school, or other social structure). Social-network software
extends these loose connections.

* Software tools can help in searching the network for a
credible chain of recommendations. For example, a potential
donor could list any number of profiles of people or
organizations they trust, as a starting point -- and also list
any number of potential recipients, as a goal -- and ask the
system to find any connections automatically. They could also
specify potential recipients either geographically (all
organizations in Africa, for example), or by kind of mission
(such as caring for orphans), or both -- and then find the
chains of trusted links and list them by strength of the
connection. Searches could also specify keywords, names, or
subject areas in the profiles. The software could also show who
throughout the whole database recommends a particular project or
organization. Other tools could allow users to click to see a
visual picture of the whole social-network database, showing how
much it is a unified network vs. a collection of separate groups
-- and if the latter, then who are the crucial links between the
groups. Potential donors could use their choice of such software
tools, or just follow links one by one to find groups they want
to support.

* Potential recipients (and others in the database) can speak
any language, and do not need to have access to computers --
since those who are recommending them will be motivated to help
them enter their project description and other profile
information.

* The profiles could belong to individuals or to organizations
interchangeably (in that the system handles them the same in
either case, although potential donors can specify one or the
other in their data searches or views). Profiles could also
belong to other entities, including software robots (computer
programs that do things you might expect a person to be doing) -
- perhaps created by the database administrators to make the
system work better. For example, a robot's profile could look
like a person's profile, but change every day to reflect
reputations or other information in the entire database --
perhaps in order to direct users to hot topics, special
opportunities, and other time-sensitive information. Robots
might also help donors combine to fund larger projects than any
one of them could handle individually.

* A number of social-networking Web sites already exist,
providing proof of concept. One often mentioned at the
Planetwork conference was Friendster
(http://www.friendster.com), which connects people for dating or
making new friends through their existing social networks,
unlike the usual matching services that connect strangers. Any
such system needs a critical mass, and Friendster is now taking
off on the East Coast of the U.S.

* Participants in social-networking software are not interrupted
when their referral network is traversed; they do not have to
answer a phone call or email. This makes possible much more
exploration of existing referral network. Donors deciding how to
use their money can look through hundreds of person-to-person
links, instead of only a few.

* All the information on these sites is public and voluntarily
given. Anyone who creates a profile can choose what they want to
reveal about themselves. At the same time, social-network sites
have strong pressures for honesty and accuracy, since peoples'
friends and colleagues are on the same site, and can see how one
presents oneself.

* Some churches raise money through public donations, in which
members of the congregation parade near the collection basket in
front of the group, and everybody can see what is dropped in.
Other churches provide envelopes so that members can donate
privately. The online referral database offers both
possibilities, and can allow each donor to choose whether or not
to make their donations public -- which I think will be the
prevailing system.

* A fundraising site could be useful for connecting people even
if they do not want to donate. Such visitors should be welcomed,
as they increase traffic and general usefulness of the site --
and might change their mind and donate after all. In addition,
it would be costly to police the site to keep out those who do
not intend contribute, since the whole idea is to allow donors
to explore possibilities, without any guarantee of finding a
match that speaks to them.

* Donation guided by online exploration of networks of personal
trust, relationship, and recommendation could become widely
popular. There are many successful models and precedents for
online activities that involve other people -- either in one's
own social network, for games or discussion among strangers, and
for activism in issues important to society in general. Here is
a way to combine these kinds of interpersonal activity online --
and participate meaningfully in donation decisions, with the
help of the best personalized expert guidance anywhere.

* This kind of social-network software could help in many areas
outside of fundraising -- for example, in improving elections of
political candidates. Already, probably most voters decide whom
to vote for mainly through personal recommendations. But today
the chain of personal referrals, if traced back, is likely to be
found to originate in television ads or other crafted
manipulation (you may have noticed that news reports are most
informative about what is really going on just after the
election, when they can tell the truth because it no longer
matters). Online referral networks could improve the political
process by providing more people with trusted connections to a
variety of experts -- who, unlike political advertisements, do
not always have pre-established positions they are paid to
support regardless of the facts. Another political use would be
to help people judge the credibility of action alerts, even from
organizations they do not know -- providing a much larger
potential base for public mobilization and response to the most
important alerts.

* A down side of referral networks is that recommendations can
be traded -- you scratch my back and I scratch yours -- or even
sold. This kind of activity, which can span the range from
normal social process to corruption, can occur wherever personal
referrals are used. For example, several decades ago scientific
papers started being rated by how many future papers referenced
them; collusion quickly developed and was quickly recognized,
but is still with us today.

In the referral database, one way to reduce this problem would
be to have rating agencies, companies in the business of
investigating claims and publishing relevant findings, good or
bad, on the database. They would not need to audit everyone, but
might check those who are most important on the database, for
example those who can change large flows of money. Rating
agencies could also help with the "transitivity" problem: if A
recommends B and B recommends C and C recommends D -- with all
the recommendations within the same professional context and
purpose -- then to what extent can those who trust A's
recommendations also trust D's? (If enough money depends on
answer -- for example, if A is a celebrity and D is a widely
respected expert at a critical scene -- then an independent
agency might investigate and provide its findings on how well
fans of A know what they are getting with D.) Donors could
follow or ignore these agencies' reports as they wish. [Note: I
added the idea of rating agencies, which I not hear at the
conference. Many presenters mentioned online reputation,
however.]

Interestingly, the four kinds of entities on the database that
have been discussed so far -- individuals, organizations,
robots, and rating agencies -- all use the same format, a
profile of the individual, with an unlimited number of referrals
to others. The software need not even distinguish between these
different entities. (There is at least one other kind of entity -
- imaginary characters that could represent factions, themes
like reconciliation, or abstract themes that may be nameless --
or could serve to bring separated social networks together.
These fictitious people are also handled by the database exactly
like real people. Such characters have developed, totally
unplanned, in existing social-network software, and can become
among the most popular "persons" in the system -- showing the
need for this kind of device.)

Note: How to Be Useful

One of the most useful presentations at the Planetwork
conference was "The Multiple Dimensions of Emergent Media," by
Mark Graham, a computer conferencing pioneer who founded
Peacenet and was president of Whole Earth Media, in addition to
many other credentials. His talk referred listeners to over 30
Web sites of new-media tools and experiments(3). He also
suggested some guidelines for successful projects in this field
-- guidelines not just for technology, but for effectiveness and
building constituency in whatever one does:

* Think big but keep it simple;

* Solve problems, don't invent solutions;

* Do your homework -- know what has been done before;

* Connect with and learn from others;

* Be true to your vision;

* Focus on deliverables and keep it real.

Ultimately the purpose of technology is people. The point of the
fundraising scenario outlined above is to make possible a
personal connection between people who have very different
lives, and who otherwise would not have a trusted channel
between them. With such channels available, donors can make
better decisions, and are more likely to become personally
involved.

Next: Blogs (Web logs) and their software tools, Moveon.org,
online communities, RSS and news aggregation, instant uploading
and publication of photos from camera-equipped cell phones,
online video editing, advanced Google techniques, and more.

References

(1) PLANETWORK: Networking a Sustainable Future, conference June
6-8, 2003, at the Presidio in San Francisco,
http://www.planetwork.net

(2) THE AUGMENTED SOCIAL NETWORK: BUILDING IDENTITY AND TRUST
INTO THE NEXT GENERATION INTERNET. For a 2-page abstract and a
link to the full 77-page paper, click "WHITE PAPER" on
http://www.planetwork.net

(3) Links mentioned in Mark Graham's talk are at:

http://mark.path.net/planetwork


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