AIDS TREATMENT NEWS Issue #396, November 30, 2003
phone 800-TREAT-1-2, or 215-546-3776

CONTENTS:

** World AIDS $4.7 Billion -- WorldCom $35 Billion
The entire worldwide campaign to save tens of millions of people
is a distant second to the campaign to save one corporation.

** UNAIDS Report for 2003: Most Deaths and New Infections Ever;
Some Good News
The global AIDS epidemic is still getting worse. There have been
successes, however, and many countries are at a critical stage
where they could prevent a major epidemic if they act now; while
some are beginning to do so, others are not. Overall there has
been a big growth in commitment by governments of rich countries
and developing countries alike, though financially the current
effort is only about half of what is needed. Stigma remains a
major obstacle to stopping the spread of HIV and getting those
infected diagnosed and treated.

** New Neuropathy Treatment Guidelines
These expert guidelines for treating neuropathic pain are
particularly important, since most of the treatments are off
label -- meaning that they have been approved by the FDA but not
for this particular purpose. These guidelines will help educate
doctors about what treatments are best, and should also help in
getting insurance reimbursement for care that clearly represents
expert consensus but is not in the official labeling at this
time.

** Revised U.S. Adult and Adolescent Antiretroviral Treatment
Guidelines; Also Revised Pediatric Guidelines
Both the U.S. adult and pediatric guidelines were revised in
November 2003.

** AIDS TREATMENT NEWS: Changes Next Year
During the next year we must change our traditional business
model. Also, we plan to do more reporting online, and continue
the printed newsletter as well.

** Subscriptions to Share: New Way to Sell Content or Help
Fundraising Online
While exploring business models for the newsletter we found a
radically different way to sell information or help raise funds
online. A system designed to encourage sharing allows
subscribers or donors to use parts of their subscription to
create new subscriptions for others, without the publisher's
involvement -- eliminating registration, reducing transaction
costs, encouraging larger subscriptions or donations, and
creating opportunities for bringing people together around an
idea, purpose, or cause.


***** World AIDS $4.7 Billion -- WorldCom $35 Billion

by John S. James

A month ago newspapers reported a huge bankruptcy settlement
that wiped out about $35 billion in debt for one corporation,
the notorious WorldCom.

"A federal bankruptcy judge yesterday gave his approval to a
plan by telecommunications giant WorldCom and its creditors to
exit bankruptcy by the end of the year. The decision wipes out
in one stroke nearly $35 billion in debt, and positions the
scandal-plagued company to again become a viable business and a
formidable player in the intensely competitive industry."
PHILADELPHIA INQUIRER, November 1, 2003.

The total worldwide spending for AIDS prevention, treatment, and
care was $4.7 billion in 2002, the latest year for which figures
are available (UNAIDS, REPORT ON THE STATE OF HIV/AIDS
FINANCING, June 2003).

The comparison speaks for itself -- $4.7 billion to control an
epidemic killing 3,000,000 people this year, vs. $35 billion in
debt restructuring to rehabilitate a single company heavily
involved in one of the biggest scams in history.

The failure to respond to AIDS is a human problem, not a fact of
nature. All of us can do our part to demand political will. The
basic commitment is to insist on workable arrangements instead
of settling for something less. WorldCom apparently has
effective political consensus and cooperation on a viable path
forward. But AIDS still does not.


***** UNAIDS Report for 2003: Most Deaths and New Infections
Ever; Some Good News

Three million people died of AIDS this year compared with 2.7
million last year, and five million were newly infected -- both
more than ever before, according AIDS EPIDEMIC UPDATE: DECEMBER
2003, compiled and published by UNAIDS, the United Nations Joint
Programme on HIV/AIDS. Forty million people are now living with
HIV, up slightly from last year.

There is good news from a number of individual countries, as
well as increased commitment from many governments, and
increased total resources worldwide devoted to the epidemic.
Some prevention programs have worked well. But many countries
are at a critical stage where they could abort a major epidemic
if they act now. Unfortunately some of their governments are
still not serious about AIDS.

AIDS Epidemic Update: December 2003 is available at:
http://www.unaids.org

A few situations, among hundreds of others:

* Swaziland, in Southern Africa, shows how fast HIV can spread.
In 2002 almost 39% of the entire adult population age 15-49 had
HIV. Ten years before it was 4%. (Imagine what this means for
Eastern Europe, many parts of Asia, and other places where
governments are not dealing with an early epidemic that could
still be stopped, if only people mobilize in time.)

* In Africa, fewer than 2% of those who need treatment now can
get it. In heavily affected countries, only about 1% of women
have access to services for prevention of mother-to-child
transmission.

* In many African countries, HIV prevalence seems to be
stabilizing at a high level -- but this is not really good news.
The reason the percentage infected is not higher is that more
people are dying.

* In the U.S., about half of the 40,000 new infections this year
are of African-Americans (who make up 12% of the population) --
often women who avoid high-risk behavior themselves but get HIV
from men who are secretly having risky sex or sharing needles --
just one of many illustrations of how stigma and discrimination
make AIDS control more difficult.

* Successes include Kampala, Uganda (about 8% of pregnant women
now have HIV, an indicator of prevalence in the general adult
population -- a "remarkable feat" according to the report). No
other country has done as well, although big drops have also
occurred in Ethiopia and Rwanda.

* "Globally, the AIDS response is moving into a new phase.
Political commitment has grown stronger, grass-roots
mobilization is becoming more dynamic, funding is increasing,
treatment programmes are shifting into gear, and prevention
efforts are being expanded." (AIDS EPIDEMIC UPDATE: DECEMBER
2003).

Total public and private global spending on AIDS prevention,
treatment, and care is now about $4.7 billion dollars
($4,700,000,000) a year, compared to a need of $10 billion --
better than before, but scandalously low for an epidemic killing
3,000,000 people per year and likely to kill tens of millions
more.

* As programs scale up, another critical shortage is trained
personnel. HIV treatment is needed now to keep medical and other
trained people alive. Also, despite critical shortages,
thousands of nurses in Africa are now unemployed due to caps on
spending for public services.

Facts like these hint at what individuals and organizations can
do. Many of the problems are local, and can only be handled by
those directly involved. But many others (especially the lack of
resources) are global. And many problems in the developing world
originate in the U.S. and other rich countries.


***** New Neuropathy Treatment Guidelines

by John S. James

An expert panel has recommended five different kinds of drugs
that are suitable for treating neuropathy pain in some patients.
The review and recommendations were published in the November
issue of ARCHIVES OF NEUROLOGY(1). These guidelines mention HIV
but are not HIV-specific. They are available free on the Web (at
least when we checked on December 1, 2003) at:
http://archneur.ama-assn.org/cgi/content/full/60/11/1524

From the article:

"First-line Medications. The efficacy of gabapentin, the 5%
lidocaine patch, opioid analgesics, tramadol hydrochloride, and
tricyclic antidepressants (TCAs) has been consistently
demonstrated in multiple randomized controlled trials. Each one
can be used as an initial treatment for neuropathic pain in
certain clinical circumstances. Opioid analgesics and TCAs
generally require greater caution than the other options. For
each of these 5 medications, brief reviews of the relevant
randomized clinical trials and specific treatment
recommendations follow. Treatment recommendations are summarized
in Table 2."

Not recommended but sometimes used are NSAIDS; many experts
believe they are not effective for this kind of pain.

(However, AIDS TREATMENT NEWS has heard anecdotal reports of
relief with Voltaren Emulgel, an NSAID in a topical formulation.
The topical form is not sold in the U.S., but may be available
from Internet pharmacies for under $20. See our 1999 article at:
http://www.aids.org/atn/a-321-01.html)

The same issue of ARCHIVES OF NEUROLOGY also has an article on
surgical treatment for neuropathy pain(2), and an editorial(3).

References

1. Dworkin RH, Backonja M, Rowbotham MC, and others. Advances in
Neuropathic Pain: Diagnosis, Mechanisms, and Treatment
Recommendations. ARCHIVES OF NEUROLOGY November 2003; volume 60,
number 11, pages 1524-1534

2. Giller CA. The Neurosurgical Treatment of Pain. ARCHIVES OF
NEUROLOGY November 2003; volume 60, number 11, pages 1537-1540.

3. Rosenberg RN. Pain 2003. ARCHIVES OF NEUROLOGY November 2003;
volume 60, number 11, page 1520.


***** Revised U.S. Adult and Adolescent Antiretroviral Treatment
Guidelines; Also Revised Pediatric Guidelines

by John S. James

Small but important revisions to the U.S. Guidelines for the Use
of Antiretroviral Agents in HIV-1-Infected Adults and
Adolescents were published in a revised document on November 10,
2003. The latest HIV treatment guidelines are always available
at:
http://www.aidsinfo.nih.gov/guidelines/

The revised guidelines include warnings against two three-drug
NRTI combinations that should never be used as a triple regimen
(abacavir + tenofovir + lamivudine, and tenofovir + didanosine +
lamivudine), because these regimens failed to control viral load
in treatment-naive volunteers in recent clinical trials, leading
to development of viral resistance in some patients. The problem
with these regimens is well known -- but unless the warning is
in the guidelines, some physicians with little HIV experience
may make a mistake.

The warning against combining d4T + ddI (stavudine plus
didanosine) due to risk of toxicities now clearly applies not
only in pregnancy but to anyone (unless the benefits outweigh
the risks for a particular patient). The previous edition of the
guidelines had been criticized for being ambiguous on this.

The revised guidelines warn against combining atazanavir +
indinavir (possible worse hyperbilirubinemia), and FTC + 3TC
(similar resistance profile, without additional benefit).

And they also include additional information on T-20
(enfuvirtide).

Atazanavir and FTC have been added to the guidelines as
potential alternative drugs in certain regimens. (The new
guidelines also make it clear that "alternative" recommendations
can be the preferred treatment for some patients.)

This edition includes a helpful "What's New in This Document?"
section just after the cover page.

Patients who want to check to see how their treatment compares
should note that much of the information is in the tables at the
end of the document. Remember that HIV-expert physicians may
have good reason for not following the guidelines in some cases.

Pediatric HIV Guidelines Revised

A revised GUIDELINES FOR THE USE OF ANTIRETROVIRAL AGENTS IN
PEDIATRIC HIV INFECTION was published November 26, 2003, by the
U.S. Department of Health and Human Services. It is also
available at the U.S. government Web site for official HIV
treatment and related guidelines:
http://www.aidsinfo.nih.gov/guidelines/


***** AIDS TREATMENT NEWS: Changes Next Year

by John S. James

At AIDS TREATMENT NEWS we are considering two long-term changes,
and want to share our thinking with our readers. You can send
comments to us at: aidsnews@....

First, we must change because our traditional business model has
gone away. For almost 15 years AIDS TREATMENT NEWS was supported
mainly by individual subscriptions. But today many of our
subscribers are on disability or otherwise unable to pay, so we
provide the newsletter without cost to old and new subscribers
(including over 200 prisoners). AIDS TREATMENT NEWS is not
currently set up as a non-profit, so we pay for the free
subscriptions out of pocket without funding. We do not accept
grants or contributions from pharmaceutical companies or others
whose products we might cover, although they can subscribe.

Business subscriptions now account for most of our income, which
concerns us. Today the pharmaceutical industry funds almost all
AIDS treatment publications. So far this system has worked
better than we would have expected, but that could change any
time. If the community loses its independent publications it
will be in trouble. AIDS TREATMENT NEWS must change its business
model, or slide into increasing dependence on industry.

Second, during the next year we will begin reporting primarily
online -- while still making print copies available, because
many people want or need them. Online reporting will allow us to
cover breaking news and other stories we now miss because they
are history by the time our print newsletter reaches
subscribers. Online publication will also allows us to update
articles when necessary (we plan to publish a record of the
changes).

We are considering three business models to replace the one that
no longer exists. Starting with the best, they are:

1. AIDS TREATMENT NEWS would be housed within a nonprofit, and
all online distribution would be free. The print edition would
then be self-supporting, especially if funding could be found to
pay for prisoners and others who need free copies. We might
outsource the printing and distribution to a separate
organization, so that we could focus on the reporting. We are
seeking funding for the online edition, and for those who need
free print subscriptions.

2. The second choice is to continue the current business model,
but find support for the free print subscriptions.

3. The third choice is to charge a small fee for subscriptions
online.

Selling information online has been notoriously difficult for
many who have tried it. While exploring the possibility, we
devised a radically new method (called Subscriptions to Share)
that we think could work for selling subscriptions, and also for
online fundraising. But we want to focus on AIDS, not on
developing business or fundraising methods -- and our online
newsletter should be free instead of low cost. Subscriptions to
Share remains a possibility, however. We summarized it below in
the hope that it will be useful to others.


***** Subscriptions to Share: New Way to Sell Content or Help
Fundraising Online

by John S. James

While exploring future options for AIDS TREATMENT NEWS I found a
flexible way to sell information or help raise funds online.
While AIDS TREATMENT NEWS may not use it because we want to make
our information free, I'm publishing this summary to help small
publications and other projects that might benefit. For the full
article see the Web link below.

The Need

One of the biggest obstacles to small publications today is the
difficulty of charging low prices for online content. Thousands
of people now make a living selling knick-knacks on eBay because
they can reach a global market through the Internet. But few
writers and editors can make an independent living that way
(unless they serve a high-priced, usually corporate market) --
largely because the transaction cost and inconvenience of
charging any money at all will greatly reduce readership,
probably by 90% or more. Even requiring free registration at a
Web site can seriously reduce its use.

The world would be a better place if thousands of individuals
and small organizations could make a living writing, editing, or
publishing online, charging maybe 25 or 50 cents per newsletter
issue, or per article downloaded. I believe the publishing
industry has missed opportunities to do this, because of its
obsession with preventing subscribers from sharing proprietary
information. Designing systems to encourage sharing gives a very
different perspective.

Subscriptions that Propagate

We will show how to sell subscriptions online with no
registration at all. The publisher does not need a user name,
email address, or any other contact information for subscribers.
The reason is that all subscribers can break off pieces of their
subscription and sell or donate them as totally new
subscriptions of whatever size, without the publisher's
involvement. These new subscriptions can also reproduce -- and
so on to any depth. While the publisher does not need to do
anything in this reselling or giving away of his or her
information, the publisher does get paid for it -- and can
control it, since the publisher's server keeps track of all
subscriptions and handles fulfillment.

For example, the publisher can sell one large subscription to a
public library, which can then give away hundreds of tiny
subscriptions (access to one download, or a handful of them) for
clients to use anywhere. Or an individual can buy a subscription
and offer dozens of small subscription grants, worth a few
dollars each, to anyone anywhere in the world who explains in
two or three sentences how they will use it to support a
particular cause -- bringing people together around that cause,
and putting it on the table for public discussion.

Publishers do not need to contact subscribers when articles come
out, since anyone can get notices and summaries through open
list serves.

Less obvious consequences of Subscriptions to Share include:

* A single subscription can give access to hundreds of different
publishers -- and hundreds of different charities as well,
automatically keeping tax records and printing documentation on
request.

* A subscription can sell digital tickets to fundraising or
commercial events (if the event sponsor offers the service and
the subscription owner allows it). These digital tickets (like
the subscriptions themselves) are small codes, as short as four
characters long, that can easily be written down or given over
the phone, but are almost impossible to guess. At the event they
are scanned or typed in. A single digital ticket can admit one
person or any number, whether they arrive together or
separately. If payment is through an existing subscription no
financial transfer is necessary. This means that in one minute
online you could make reservations and buy a single ticket for a
dozen people arriving in several groups, phone the code to each
group, and meet inside the theater. If someone cannot make it
you can call somebody else and give them the code -- no need to
resell any ticket, nor arrange to meet outside.

* Corporations or others that want to distribute bulk copies of
an article (either online or in print) can buy a license
automatically through the publisher's Web site, charging their
existing subscription. The server prints a permission notice to
be included with the copies -- with a coded transaction number
as proof of purchase of the license.

* Subscriptions can also be pure donations for fundraising --
not giving access to articles or tickets. This means that a
donor who could commit to raise, say, $100, could give the whole
amount to the organization immediately, and then "sell" portions
of that donation to other contributors later -- even much later.
The "owner" of any portion of the donation can confirm its
authenticity and amount at any time through the Web site that
manages the subscription.

* This donation system also means that people can contribute
more, since they have a good chance of being able to get their
money back if they ever need it in the future, by "selling"
parts or all of their donation to other donors friendly both to
them and to the cause. This kind of donation generates a gift
economy where people give money when they have it and can get it
back if they need it, keeping resources in use. Of course the
organizations get the donations free and clear.

* Using prepaid subscriptions, even small donations can easily
be given throughout the world. For example, a Web page could
show several faces, or dozens or hundreds of faces; you can move
the pointer over a face to hear that person's appeal in their
voice (and see a written translation in any of a dozen
languages), click to give 50 cents or a dollar to the cause,
click as often as you like or use a separate link for a large
donation, and hear their thank-you. Certainly these pages will
generate marketing statistics to allow successive improvement.
Legal complications should be minimal, since all money changes
hands through conventional means such as credit cards. This
system only removes paperwork from the decision process, at the
point of purchase or donation.

* A single subscription to a subscription agency can allow
payment to any number of businesses and/or charities, through
prior agreements they have with the agency. Therefore owning one
or a few subscriptions could enable someone to buy from many
publishers, or donate to many organizations, even if they never
knew of them before. (Of course the subscription owner can limit
access if he or she chooses. Needless to say, the offspring of
any subscription will share all its limits.)

* This system gives readers and donors more control of
publishers' or charities' agendas, by telling the organizations
exactly what is purchased or donated, and when.


***** How It Works

The key to this system is a code we call a "chit," typically
eight characters long. With eight characters (each a number or
letter, not case sensitive), a publisher, charity, or
subscription agency has enough combinations to issue over a
million different chits (a million subscriptions) -- and yet if
an intruder tries to guess, their chance of getting any correct
code to use is less than a million to one. (And if they do get
hold of an unauthorized code, all they can do with it is use up
the value of that subscription -- which the publisher will
probably replace free for the customer, since fulfillment cost
is usually zero.)

Each chit gives full access to its subscription; there is no
separate user name or password. A subscription may allow a
certain number of article downloads from the publisher's Web
site. For example, a $20 subscription might give 100 downloads
(20 cents each). Subscriptions could also be denominated in
currency (such as dollars or euros) instead of downloads.

The chit also gives access to the subscription's account-
management page on the publisher's site. Many subscribers will
never need to use this page. Others will use it to create and
customize new subscriptions, license bulk copies, cancel a
subscription if necessary, or for other purposes.

While the chits created by the publisher's server are typically
eight random characters, subscribers can create new
subscriptions with any new chit name they want, provided it is
not already in use by that publisher. These chits can be any
length, from just one character to thousands (both these
extremes have real uses). The subscriber can add or subtract
various powers from each newly created chit, creating customized
new subscriptions for distribution to others.

The consequences of theft of a chit are small, so people can
carry the code around and use or share it freely. The worst
possible loss is the value of the subscription -- and if that is
a concern, its owner can create a smaller subscription to carry
around or share, while keeping the master in a safe place.

This is just the beginning. Our full article shows how to reduce
harm or even gain benefit from unauthorized copies of sold
information. It introduces other concepts such as sharing chits
among teams; revocable and irrevocable subscriptions; prepaid,
renewed, and per-use subscriptions; anonymous subscriptions and
why they should cost more; expiration warnings to unknown
subscribers; marked donation-only subscriptions; syndication for
free use on Web sites; discounts and stop-loss provisions;
propagation of restrictions; free or low-cost repeat downloads
as a marketing tool; the importance of free information and open
list serves for selling content; fully digital collectables that
print limited-edition plaques for memorable or historic projects
(options include the subscription's own history, art work chosen
by its owner, and a secure autograph through public-key
cryptography); subscribing to publications, databases, causes,
or campaigns; dealing with theft; why chits have little or no
street value; creative chit names including single letters,
quotes, creeds, or entire documents; customized subscription
expiration; and subscriptions as contests, puzzles or games.

For More Information

The latest full article is at:
http://www.communicationpractices.org/subshare.html

Please send comments to me at:
subshare@...

OK to distribute this summary unchanged, through December 2003.
After December check the Web site above for the latest version.


--
John S James
AIDS Treatment News
www.aidsnews.org