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AIDS TREATMENT NEWS Issue #208, October 7, 1994
   phone 800/TREAT-1-2, or 415/255-0588

CONTENTS:

AIDS Drug Interactions Guide Available

Patents and Biotechnology: Federal Hearings October 17 in San
Diego, Comments Invited

AIDS and Nutrition: Clarification, Additional Resources

KS: DOX-SL Submitted for Approval

Yokohama Conference: Behind U.S. Media Coverage

FDA Proposes Financial Disclosure for Clinical Researchers

Grassroots Organizing: Communication Groups

California (and Beyond): Proposition 187 and Public Health


***** AIDS Drug Interactions Guide Available

Project Inform has compiled an 11-page fact sheet on
interactions of drugs commonly used by people with HIV
disease, including experimental drugs. Everyone using
multiple drugs for HIV-related treatments should obtain a
copy.

The September 28 version includes interaction between other
drugs (and some foods) and: acyclovir (Zovirax); amphotericin
B (Fungizone); antineoplastics; atovaquone (Mepron);
azithromycin (Zithromax); AZT (Retrovir); ciprofloxacin
(Cipro); clarithromycin (Biaxin); clindamycin (Cleocin);
clofazimine (Lamprene); cycloserine (Seromycin); dapsone; ddC
(Hivid); ddI (Videx); delavirdine; d4T (Zerit); ethionamide
(Trecator); fluconazole (Diflucan); flucytosine (Ancobon);
foscarnet (Foscavir); ganciclovir (Cytovene); interferon
alpha (Intron A; Rofereon); isoniazid (INH); itraconazole
(Sporanox); ketoconazole (Nizoral); nevirapine; pentamidine
(Pentam); protease inhibitors; pyrimethamine (Daraprim;
contained in Fansidar); rifabutin (Mycobutin); rifampin
(Rifadin); sulfadiazine; TMP/SMX (Bactrim, Septra);
trimetrexate (Neutrexin). Also included are suggestions for
working with your health-care provider so that drug
interactions receive proper attention. A short glossary
defines medical terms used in the fact sheet.

For a free draft copy of the Project Inform Drug Interaction
Fact Sheet, call the Project Inform hotline, 800/822-7422 or
415/558-9051, Monday through Saturday 10 a.m. to 4 p.m.
Pacific time.


***** Patents and Biotechnology: Federal Hearings October 17
      in San Diego, Comments Invited

by John S. James

Public hearings on biotechnology patents will be held October
17, 1994, at 9:00 a.m., in the Cooper Room of the San Diego
Concourse, 202 C St., San Diego. Persons interested in
speaking or in sending written testimony should contact the
Commissioner of Patents and Trademarks (see information
below).

Background -- Why It's Important

The AIDS community has largely ignored patent issues until
now -- not because it does not matter, but because there has
been no activist to investigate this area and explain its
importance.

Patent issues are important because it can take four years or
more between the time an AIDS, cancer, or other biotechnology
patent is applied for, and the time it is granted. During
this time, the patent application usually stays secret.
Delays, therefore, not only hold up the development of one
treatment (since investors are unlikely to finance clinical
trials until the patent is granted), but can also delay other
research and development by keeping cutting-edge medical
information secret.

(One example is compound Q, the well-known experimental AIDS
treatment, which seems to have been delayed for about two
years while the patent was pending. If this drug had turned
out to be the home run that many who were close to it
expected, the delay would have caused many thousands of
deaths. And if current directions continue, the drug or drugs
which finally do lead to major advances in HIV treatment
could very well suffer similar delays.)

Biotechnology patents used to take much longer than the
average of all patents to be granted, with industry and the
PTO essentially blaming each other. In July 1990, the U.S.
General Accounting Office reported that it took an average of
four years to get a patent in genetic engineering, and three
years in other areas of biotechnology, vs. an average of 18
months for all patents. Major improvements have been made
since then, but we do not have current figures.

Recently a patent attorney for industry told us that patents
for AIDS and cancer treatments take much longer than patents
for other diseases, due to the way the PTO interpreted the
"utility" requirement -- the requirement that an invention be
useful. But another expert told us that there were no figures
to prove this -- and that companies often deliberately
delayed their own applications, for reasons explained below.

The "Utility" Controversy

The patent law requires that a patentable invention not only
be new, and more than a non-obvious advance that would have
inevitably been discovered in routine progress of the field,
but also that it be useful (have "utility"). This means that
somebody trying to patent a new medical treatment may be
asked for in vitro (animal or human, not just test tube) data
to convince the PTO that it works. The FDA, of course, will
ultimately make this determination, when granting marketing
approval for the drug (or medical device); but unless the
patent is granted at a much earlier stage, the trials leading
to FDA approval are unlikely to ever occur. The reason AIDS
and cancer patents take longer than patents for other
diseases, according to this industry view, is that it is
harder to prove that AIDS and cancer drugs work; to solve
this problem, the PTO should ease up on the utility
requirement.

The second expert quoted above had a different view. He said
that with medical patents, it is often in a company's
interest to deliberately delay its own application. The
reason is that with a non-medical invention, as soon as you
get the patent (or even before), you can start selling the
product; but with medical treatments, you cannot sell the
drug until it is approved by the FDA. Since the patent runs
for a fixed term of years, a company may not want to get its
patent too long before FDA approval, lest it decrease the
value of the patent by reducing the number of years of
exclusive sales. (This situation is common enough that patent
examiners have a phrase for it: the "submarine patent." For
additional background on the submarine patent, and other
problems it can cause, see article by Paul Karon in the Los
Angeles Times, June 1, 1994, business section, page 9.)

One possible reform would be to not require proof of
usefulness for medical treatments. Since the FDA will
eventually make this determination anyway, and since without
the FDA's finding of efficacy the treatment will be
commercially worthless and the patent would not matter much
anyway, why should the PTO slow down the process by insisting
on making its own separate, lesser determination of whether
or not a drug works? This kind of reform might be considered,
although it might take an act of Congress; but any big change
must be made carefully, since the "utility" requirement --
part of the U.S. patent system for over 200 years -- is there
for a reason. Without it, someone could tie up a new area
early, without doing the work required to produce a useful
invention. Then others who were ready to do the work could be
locked out.

Also, the PTO is concerned about the credibility of patent
information to investors, who often do not understand the
technology involved, and instead rely on the fact that a
patent has been issued. There is a fear that if the "utility"
requirement were weakened or eliminated in some cases, the
public could be misled to invest unwisely.

Issues at the San Diego Hearings

The October 17 hearings in San Diego will address certain
specific issues, including:

* The "utility" controversy, partially outlined above. (Other
"utility" issues involve patenting human genetic sequences
when their function is not known.)

* The "operability" requirement (that the invention must be
fully described so that an independent expert in the field
can make it work).

* Technical issues around determining "non-obviousness" of
biotechnology patents, in a rapidly changing field.

* Implications of patent-reform proposals which have been
introduced in Congress. One would provide a patent term of 20
years from the date of filing of the patent application
(eliminating the incentive of industry to delay the
processing of medical patent applications). Another would
automatically publish patent applications 18 months after
filing (as the European patent office now does), to prevent
important information from being withheld from the public for
years in many cases.

* The current rules allowing research use of patented drugs
or other materials without the permission of the patent
holder. (Loss of this defense to patent-infringement suits
would be disastrous to medical research, especially because
of the difficulty of getting pharmaceutical companies to
cooperate with each other.)

* U.S. plant patents, which currently restrict only the
sexual reproduction of plants, or use of the plants so
produced. This allows plants to be grown outside the U.S.,
and the harvested products to be imported to the U.S. without
payment to the patent holder. (Changes here could conceivably
affect access to improved herbal treatments.)

And a major concern which is not on the program for San Diego
is delays caused by the high turnover of patent examiners
with experience in both the science and the law of
biotechnology. After two or three years experience in the
PTO, these people can find more money and a less bureaucratic
work environment in industry. (See "The Looming Biotech
Vacuum," The Recorder [a legal newspaper in San Francisco],
March 28, 1994, page 1.)

For More Information

Anyone planning written or oral comments should obtain
"Notice of Public Hearings and Request for Comments on Patent
Protection for Biotechnological Inventions," Federal
Register, September 1, 1994 (volume 59, number 169), pages
45267-45271. Those wishing to speak must submit a request to
do so by October 12; written comments, however, may be sent
by mail, fax, or email either before or after the hearings,
until November 23.

Comment

It is vitally important that at least a few AIDS activists
seriously follow patent issues, and how they affect the
development of new treatments for AIDS and other serious
illnesses. We hope that this short article will help to
introduce this complex but critical area.


***** AIDS and Nutrition: Clarification, Additional Resources

by Tadd Tobias

AIDS Treatment News recently published a two-part interview
on nutrition and AIDS (issues #204 and #205, August 5 and 19,
1994). A dietitian suggested that we further clarify the
difference between the terms "nutritionist" and "registered
dietitian," and include some additional resources for
nutritional information.

Many states have enacted legislation which regulates
licensing and practice of this profession. These regulations
vary widely among states, however, and the only truly
national standard ("Registered Dietitian") is voluntary.
Practically anyone can call themselves a nutritionist, and
this person may or may not have the educational background
and training to dispense accurate nutrition information. Many
registered dietitians call themselves "nutritionists,"
especially when they work in the community or outpatient
settings. This seems to be a more "user friendly" term.

As stated in the previous article, a registered dietitian
with experience in the field is the first place to look for
appropriate nutrition information regarding HIV disease. Be
aware that "let the buyer beware" applies to this situation
as well as any other. Remember that someone who calls
themselves a nutritionist may or may not be a registered
dietitian; be sure to check their credentials. Also, it is
important to understand that, if they inexperienced in caring
for persons with AIDS, a registered dietitian may not be the
best source for information.

According to the Commission on Dietetic Registration, which
is the credentialing agency for The American Dietetic
Association, a Registered Dietitian is defined as an
individual who:

* Has completed the minimum of a baccalaureate degree granted
by a U.S. regionally accredited college or university;

* Has met current academic requirements (Didactic Program in
Dietetics) as approved by the American Dietetic Association;

* Has completed 900 hours preprofessional experience
accredited/approved by The American Dietetic Association;

* Has successfully completed the Registration Examination for
Dietitians; and

* Has accrued 75 hours of approved continuing education every
five years.

Individuals may ask the Commission on Dietetic Registration
to check authenticity of a practitioner's credentials. A
general information packet, which outlines the pathway to
registration, is also available for persons interested in
becoming a registered dietitian. Contact: Commission on
Dietetic Registration, 216 W. Jackson Blvd., 8th Floor,
Chicago, IL 60606-6995, 312/899-4859, fax [phone].

Additional Resources

* "Dietitians in HIV Practice" was started in 1993 as a
networking vehicle for registered dietitians working with
people with HIV/AIDS in the San Francisco Bay area. The group
meets about six times a year at various sites to discuss
current practices and research, and to develop community
resources and educational materials. They are now seeking
financial support to help publish a guide to nutritional
services for people with HIV/AIDS. For more information
contact Lisa McMillan at 415/252-1941.

* Project Open Hand provides comprehensive nutrition
services, free of charge to persons with symptomatic HIV
disease. For persons living in the San Francisco Bay area
they support a food bank, a home-delivered meal program, and
individualized nutritional counseling. Additionally they
publish a newsletter, Positive Nutrition, three times a year.
Contributors often are leading HIV nutrition experts, and the
culturally sensitive editorial content includes useful
information such as dietary suggestions, recipes, consumer
tips, and research news. Subscriptions are free and available
for anyone. Contact: Positive Nutrition, c/o Project Open
Hand, 2720 17th St., San Francisco, CA 94110, 415/558-0600.

* The newly-formed National HIV-Nutrition Team (N-HINT)
provides nutrition referrals for counseling, conducts
workshops, and produces a quarterly newsletter for both the
lay and professional audience. Information is available in
English and Spanish. Contact: Gustavo Wong, R.D., N-HINT,
P.O. Box 5874, Berkeley, CA 94705-0874, 510/655-3702, toll-
free 800/434-4468, fax [phone].

* Persons or organizations interested in developing
educational materials or specialized care clinics focusing on
nutrition and AIDS may contact Kristin Weaver, R.N., M.S.N.,
C.N.S.N., 1601 Ocean Ave., Suite 212, San Francisco, CA
94112-1717.


***** KS: DOX-SL Submitted for Approval

by John S. James

Liposomal doxorubicin (trade name DOX-SL*) is a form of the
chemotherapy drug doxorubicin which has been enclosed in
specially designed liposomes (microscopic spheres of fat).
Studies have found that the liposomal form of the drug is
better targeted to KS lesions (and also to certain cancer
tumors) than the free drug, which has long been used in KS
treatment. Better targeting allows more effective doses to be
given, usually with less side effects.

DOX-SL has been submitted to the FDA for possible marketing
approval, according to a September 7 announcement by Liposome
Technology, Inc. (LTI), of Menlo Park, California. According
to treatment activists who have closely followed this drug,
it is likely to be considered by an FDA advisory committee
either in December, or at a special meeting, probably in
February.

A recent trial at several U.S. medical centers studied 42
patients with KS who had failed conventional chemotherapy,
either because of toxicity, or because it did not work for
them. With DOX-SL there were no complete responses, 66.7%
partial responses, 31% stable disease, and 2.3% progressive
disease.(1)

Another recent trial, reported at Yokohama, treated 247
patients with moderate or severe KS, but who had not
necessarily failed other chemotherapy. With these patients,
who were probably less seriously ill than those in the trial
above, the best response reported for each person was 6.3%
complete response, 74.4% partial response, 18.4% stable
disease, and 0.8% progression.(2)

Several other trials of liposomal doxorubicin have also been
published.

In the U.S., DOX-SL is available in an open-label trial for
patients who cannot be treated with conventional
chemotherapy. This trial, called protocol 30-12, requires the
treatment to be given at one of the trial sites, so that the
required data can be collected. LTI hopes to replace this
trial with an open-label safety study, which will collect
much less data, and therefore could allow patients not near a
study site to receive the drug through their regular
physician. For more information about protocol 30-12 (or the
new safety trial, if and when it begins), call LTI, 415/323-
9011, and ask for the medical department.

Comment

We are continuing to hear good reports about DOX-SL from
physicians and patients who have used it.

For background about KS and its treatments, see The KS
Project Report: Current Issues in Research and Treatment of
Kaposi's Sarcoma, an 85-page report by Michael Marco and
Marty Majchrowicz, published in July 1994 by the Treatment
Action Group (TAG). Copies are available from TAG, 147 2nd
Ave., Suite 601, New York, NY 10003, 212/260-0300. A $10
donation is requested, but no one will be denied the report
due to lack of funds.

References

1. Thommes J, Northfelt D, Rios A, and others. Open-label
trial of Stealth liposomal doxorubicin in the treatment of
moderate to severe AIDS-related Kaposi's sarcoma. Proceedings
of the Annual Meeting of the American Society for Clinical
Oncology. 1994; volume 13, abstract 24.

2. S Stewart (for the International DOX-SL Study Group).
Efficacy and safety of Stealth liposomal doxorubicin in AIDS-
related Kaposi's Sarcoma. Tenth International Conference on
AIDS, Yokohama, August 7-12, 1994 [abstract #PB 0123; data
above from poster at the meeting].


***** Yokohama Conference: Behind U.S. Media Coverage

by John S. James

Because of the continuing effects of the generally gloomy
news coverage of the Tenth International Conference on AIDS,
in Yokohama, Japan, August 7-12, 1994, readers should have
some background into the mechanics of how the press coverage
came about.

First, the tone and content of most U.S. media coverage of
this conference was largely determined by one newspaper, The
New York Times. This is because the Times has, for years,
been extremely successful in selling its stories to other
newspapers. And since the vast majority of U.S. media outlets
that ran Yokohama stories did not send anyone there, they
generally re-ran portions of the Times coverage. (Other
nationally-circulated newspapers, including the Washington
Post, the Los Angeles Times, and the Wall Street Journal,
also covered the AIDS conference. But The New York Times is
reprinted more widely.)

The New York Times did not send its usual AIDS or medical
writers to Yokohama. Instead it sent a reporter who usually
covers Japan and Korea -- writing about computers,
automobiles, nuclear and other technologies, corporate
finance and other business news, and current political
issues. His articles from Yokohama are what one would expect
from a competent general reporter; the problem is that this
large and complex a conference is very difficult to cover in
depth. A reporter not familiar with the subject basically
seeks out authority or other figures, and finds something to
talk with them about -- which could be done any time by
telephone, no conference needed. The thousands of other
presentations at the meeting might as well not have happened,
as far as most of the U.S. public is concerned, since this
one reporter largely wrote what the U.S. read.

We don't know why The New York Times did not send one of its
usual AIDS reporters, who could have included more depth and
different perspectives. The savings in airfare and lodging
costs (since the person they did send already works in the
region) is one possibility.


***** FDA Proposes Financial Disclosure for Clinical
      Researchers

by John S. James

The U.S. Food and Drug Administration has asked for public
comment on a proposed rule that would require researchers
running human trials of drugs or medical devices to disclose
certain personal financial interests in the outcome of the
trial, if and when the data is submitted to the FDA to
support marketing of the drug or device. Written public
comments are due by December 21.

The proposed rule would not affect:

* Employees of the pharmaceutical companies sponsoring the
trial;

* Investigators running pre-clinical or laboratory studies;

* Investigators running human trials if they are not
submitted to the FDA in support of marketing approval for a
drug.

Also, the rule would not ban would not ban specified
arrangements for compensating investigators, only require
their disclosure. (This is important because many small
companies are underfinanced, and could not run trials unless
they could pay the investigator with part ownership in the
company.)

The rule would apply to independent investigators (such as
university researchers) who run clinical trials for
pharmaceutical companies that are trying to get their drug
approved for marketing. When these companies submit their
application to the FDA, they will have to identify the
investigators involved, and submit one of two forms. One is a
simple certification by the company that "(name of company)
has not entered into any financial arrangement with any
clinical investigator, whereby the value of compensation to
the investigator to conduct the study could be affected by
the outcome of the study. I also certify that each clinical
investigator was required to disclose to (name of company)
whether the investigator had a proprietary interest in this
product, or a significant equity interest in (name of
company), and that no such interests were disclosed. I also
certify that the investigator was not the recipient of
significant payments of other kinds as defined in 21 CFR
54.2(f)."

The proposed rule rule includes payments to the spouse and
dependent children of the investigator, but not to their
business partners.

If there are payments as defined above, then instead of the
certification, a disclosure statement must be included. If
one of the required forms is not submitted, the FDA will not
file the application for approval of the drug.

For more information

For an in-depth discussion of the rationale for this
proposal, and instructions on how to submit comments, see
"Financial Disclosure by Clinical Investigators," Federal
Register, September 22, 1994, volume 59, number 183,
beginning page 48708.


***** Grassroots Organizing: Communication Groups

by John S. James

The AIDS community has been at a continuing disadvantage in
organizing grassroots support in the form of letters and
phone calls to Congressional representatives, and to other
national, regional, and local officials. The right wing has
been very good at this.

We believe that the key to mobilizing grassroots response is
effective integration of political activity with personal and
social life. We propose organizing "communication groups" --
small, personal groups of friend who meet regularly for
social activities organized around writing and calling public
officials (and, for those who are inclined, calling talk
shows, and writing letters to the editors of newspapers).
Each group can work with many different AIDS organizations,
helping them to generate public response on their issues.
Because these are also social groups, organizers are
responsible for making sure that they work for  people -- not
just for a cause.

We have developed this proposal into a five-page article, but
it is too long to include in this newsletter. For a copy,
send a self-addressed stamped envelope to: AIDS Treatment
News, attn: Grassroots, P.O. Box 411256, San Francisco, CA
94141.

[Note: The full article is included here, although it did
not fit in the printed newsletter.]

"Communication Groups" for Mass-Movement Grassroots
Organizing

by John S. James, 415/861-2432, 10/2/94



SUMMARY

Why do people go to church? Usually not for the theology, but
for the people. A successful church provides institutional
structure and support to help make a group work well.
Churches are popular in the U.S. because the dominant
business-professional structure, through which we make our
living, does not provide a complete framework for human life.
Churches help to fill the void.

Successful MASS MOVEMENT grassroots organizing must address
the same need. It requires an institutional structure which
will take responsibility for making human groups work --
responsibility, for example, for maintaining a warm and
inviting atmosphere, and for successfully matching people to
groups which are suitable for them.

But AIDS, gay, and progressive organizations have failed to
do this. Until they do, their grassroots organizing will
appeal mainly to specialists; it will never be a mass
movement. And without a mass movement, we cannot protect our
basic rights in the modern world.

We have proposed one possible way of structuring such a
movement. This particular model is based on small, autonomous
groups, so that it can be tested and improved quickly,
without waiting for national organizations to move.


The Problem

Right-wing and hate groups have been very effective in
organizing their members to call and write to public
officials, call talk shows, etc. Sometimes they can generate
ten to a hundred times the calls of anybody else, even on
issues where public opinion is against them. This imbalance
has caused a painful loss of public civility and quality of
life, a national distraction from the most important issues
(AIDS, economic insecurity, others), and a potential threat
to our future.

How can liberal, libertarian, left, or other views, which
should be providing a balance, become more effective in being
heard? We believe that the key is to integrate political
action with social life -- geared toward meeting compatible
people, and/or toward building an ongoing extended family and
support network, like many churches do.

Almost all political organizations outside the right have
done very poorly in getting their members to call and write
public officials. And no wonder -- since their model,
basically, is getting each person to go home alone and write
or call, with little or no social support. A few people work
well this way, but most do not. As a result, the many "action
alerts" mailed or otherwise transmitted -- almost all based
on this do-it-all-alone model -- usually lay unused on desks
until thrown away.

A Model: Communication Groups

To illustrate a different model, we will picture one small
group. If this approach can work well for people, there could
be many.

The core will usually be a small invited membership of
persons who are comfortable with each other -- perhaps five
to 15 people, who may plan to stay together for years. They
might meet once a week at a member's home, a coffeehouse or
restaurant, etc. Any member can bring visitors. (The core
group itself would grow like an affinity group -- starting
with two or three people, then inviting new members who are
compatible with those already there.)

At any time, one member will be the convener, who does the
groundwork so that the meetings happen: making sure that the
next meeting is scheduled and everyone knows the time, place,
and agenda; making sure that supplies (including writing
materials, envelopes, stamps) will be there; and making sure
that several issues will be brought to the meeting for
action.

Any member can bring an issue to a meeting; no permission is
required. Whoever brings the issue is responsible for
bringing an adequate description (either oral and/or
written), important points to be made when communicating with
public officials, etc., and the names, phone numbers, and
addresses of officials to communicate with. (Often the issue
will be prepared the easy way -- by copying an action alert
from a friendly organization which is trying to mobilize
public support. Or sometimes an outside organizer or expert
will speak.)

Another way to develop issues is directly from the news.
Every day there are many outrages which are prominent enough
to get media coverage. For a single individual, it is seldom
feasible to do the research required to find out what the
real story is, and what response, if any, is appropriate; as
a result, almost always there is no response, and our values
as human beings have no effect on public life. A group,
however, can share the research work; also, its response can
be more powerful than an individual's. This makes it much
more feasible for the group to act on a story in the news.

Not everyone will agree with every issue, or be comfortable
writing or calling about it. That is one reason why several
issues should be available at each meeting; persons not
comfortable with one can work on others.

The meeting proceeds largely as a "discussion group with
stationery." Letters to officials can be written right there,
since short, handwritten letters are usually best. Phone
calls, and more involved letters such as to newspapers, might
be outlined at the meeting, with the benefit of feedback and
social support, and sent later. (Note: the "stationery" is
plain paper; the group does not need any letterhead, since
people write as individuals.)

If there are five issues at a meeting, and each has an
average of four relevant officials to write or call -- a
reasonable scenario -- then each person can send up to 20
communications from that single meeting. If there are five or
ten participants, and they meet weekly, then clearly a single
group can have an effect; on some local issues, one group
might register more public opinion than all the rest of the
public combined. And if this form of organization can fit
well into different peoples' lifestyles and aspirations, then
there could be thousands of such groups operating all the
time on behalf of humane causes.

Advantages

Coalition. Since each group will require a continuing supply
of issues to address, it will need to reach out to related
causes, to different ethnic communities, etc. And it will
have something valuable to offer them. This will build
working relationships between people who should be talking
more often to each other.

Independence. Each group can independent if necessary, not an
arm of a national organization; therefore it can work
simultaneously with many "cause" organizations, not just one.
(And it must work with many groups, or it would run out of
action alerts to respond to.)

Competition. These communication groups will create healthy
competition among national organizations. Those that stay in
touch with the public will get support on their action
alerts; those which become distant from people will see how
and why others are succeeding, and how they might improve.

Attention. Usually organizations have to push their action
alerts out onto a seemingly uncaring world. For a group to
come to them and ask for alerts to work on is unusual. This
change should get their attention -- and therefore help this
kind of grassroots organizing catch on.

Report-back. Each meeting should include time for persons to
tell what calls, letters, etc. they have sent since the group
was last together; this provides recognition for them, and
communication models for others. There might also be awards;
for example, the one who sends the most communications each
month might be taken out to dinner by the others.

Evaluation. It is important to keep good records of the
communications sent -- in order to evaluate group
performance, and also to inform outside organizations, which
will want to know what letters and calls have been made on
their issues.

When organizations ask separate individuals to write to
Congress, etc., it is difficult to find out how many actually
did so. But when a group works on the project together,
information and evaluation can be a standard part of the
process.

Social benefits. So widespread is the need to find ways of
meeting people that small industries have grown up to provide
occasions. But many people are not comfortable going to bars
or other venues to meet strangers; they would rather start
with others with whom they have something in common -- for
example, a readiness to defend their community, or a sense of
history and willingness to act on it.

Existing political organizations can serve for meeting new
people and developing circles of friends. But usually they
operate in a business mode, often cold and competitive; they
are seldom designed or intended for social purposes, and
using them that way may be resented. Also, newcomers usually
must start by sitting through many boring meetings, which
drive most people away. Communication groups, on the other
hand, are set up for socializing; but at the same time, new
people start doing useful work immediately.

This is especially important for reaching those who are busy
in their careers or otherwise. Many would like to find a
compatible social group which is also defending their
community. AIDS, gay, and progressive organizations have
failed to offer this option.

* Talk shows. These present special opportunities for those
who are into calling them. For example, the reason there are
so few liberal talk shows (leading to the right-wing
imbalance) is not because of a conspiracy, but because
liberal hosts don't get enough callers to survive. This means
that you can be almost sure of getting on the air with
sympathetic hosts, even on some of the biggest radio
stations, and reaching many thousands of people. Hostile
hosts are easier to find, but obviously harder to work with;
they are very experienced, often deliberately unfair to
callers, and they control the switch. Groups may want to get
professional advice and run training sessions to teach
members how to accomplish their purpose (reaching the
audience, not beating the host) in this difficult setting.

* Newspapers. Letters to the editors can reach thousands of
people; and it is easier to get published than generally
realized. The group can provide support, brainstorming,
ideas, etc. -- allowing everyone, whether or not they have
writing skills, to participate in developing the message; the
writers can finish and mail their letters later. Since they
will be writing as individuals, there is no need to come back
to the group for approval; this allows rapid response to
public issues, and also avoids intra-group "process."

* No external funding needed. The expenses -- postage, phone
calls (mostly local), and occasional photocopying -- are less
than people ordinarily spend on social activities. Funding,
therefore, is not an issue. Anyone can move ahead to develop
this model without waiting for others to get on board.

Next Steps

We see the following next steps in developing this project:

1. Suggestions and discussion to improve this outline.

2. Several "prototype" communication groups to test the idea,
refine it, and produce a kit to help people who want to start
new groups. (As an early test, I would like to start a group
to support existing AIDS organizations by responding to their
action alerts on local, regional, and national issues.)

3. Outreach. Since these groups are set up for communicating,
they can handle outreach (for this grassroots organizing
model) by doing what they do anyway: helping existing
organizations, writing to community newspapers, and otherwise
encouraging the formation of new communication groups.

The permanent goal is to develop ways to live that build the
kind world we want to live in.




***** California (and Beyond): Proposition 187 and Public
      Health

by Tadd Tobias and John S. James

Proposition 187, on the November 8 ballot in California,
would prohibit publicly funded hospitals and clinics from
providing any but emergency public medical care to
undocumented immigrants. Doctors would be required to report
suspected illegal immigrants to Federal authorities. Most
media attention so far has been focused on other parts of
Proposition 187, such as barring children from schools; our
concern is that the medical consequences have not been well
communicated to the public. While this particular proposal
would apply only to California, it has major implications for
national policy.

Despite antibiotics, the modern world is inherently
susceptible to epidemics because of its unprecedentedly large
population and massive, rapid travel. Besides known dangers
like AIDS, tuberculosis, and plague, there are many thousands
of unknown viruses, some of which have caused deadly local
epidemics of new diseases with no known treatment -- leading
to fear among experts that a pandemic could potentially get
out of control and quickly spread throughout the world.

The public health system is our main protection against
epidemics. But this system works quietly, through disease
surveillance and prevention measures, and can easily be
ignored until something goes wrong. In the U.S., the public
health system has been seriously weakened in recent years by
defunding and neglect. Because it is low profile, it is
politically vulnerable; the public can take foolish risks
without realizing that anything is being lost.

One concern about Proposition 187 is that it will make people
afraid to seek help when they should. In one recent case, an
87-year-old Korean woman died in Pinole, California after
being burned in a bathtub accident, when relatives did not
call emergency help because of fear that some family members
could be deported; the local police chief said she would not
have died otherwise. ("Immigrants' Fear of Seeking Help
Proves Deadly; Woman Dies After Family with Illegals
Hesitates to Get Medical Assistance," San Francisco Examiner,
September 6, 1994, page A4). Health experts fear that such
cases will become more common if Proposition 187 passes. In
this case there was no danger to "the general public"; but if
health workers cannot diagnose and treat contagious diseases,
everyone's risk is increased.

Last week AIDS Treatment News asked Bob Prentice, Ph.D.,
Deputy Director for Community and Public Health Programs, San
Francisco Department of Health, about the potential impact of
Proposition 187 on his organization's work. He made the
following points:

* "It would be a tremendous setback to public health efforts
because it would mean losing access to people who may be
either vulnerable to exposure or in fact have some
communicable disease and putting others at risk. Communicable
diseases don't know anything about insurance or immigration
status. There are aspects of this legislation which would
handcuff our efforts to reduce communicable diseases."

* "(Having to check immigration status and report people) is
such a philosophical contradiction to everything that all of
the staff that work in our programs are committed to. They
are working to protect the public health. The physicians in
our community health centers have gone on record unanimously
opposing Proposition 187 because that's not why they are
doctors... I think it is going to cause a tremendous burden
on them if they try to decide how they are going to handle
something that is completely inconsistent with the basis of
their training, the basis of their current practice."

We asked Dr. Prentice if Proposition 187 would save
California money by reducing the demand for services.

* "The basic principle of public health is that prevention is
the best and least costly approach. For example, if we are
precluded from carrying out the relatively simple and
inexpensive screening for tuberculosis, and treating people
early if there is some indications they are developing active
disease, then all the interventions appropriate for that
earlier stage will be missed. As a result, people could
develop active disease and expose others.

"Another example is if a woman is pregnant and does not get
regular prenatal care. It certainly increases the risk during
the pregnancy and the risk of having a complicated birth.
Those become tremendous expenses. Those are things we could
monitor during prenatal care, to anticipate that there may be
a high-risk pregnancy, and manage it successfully so it
doesn't become costly."

Other Medical Officials

* Sandra Hernandez, M.D. Director of Health, San Francisco
Department of Public Health:

"Passage of Proposition 187 will: 1) increase the risk of
contagious diseases; 2) increase the administrative burden on
our employees, while diverting precious resources away from
direct care services; 3) seriously threaten federal funding;
and 4) contradict our state mandate to provide medical
services to the poor and indigent... Clearly, the health and
public safety of all residents will suffer with the passage
of this initiative. Finally, the combination of these austere
requirements challenges the ethical and legal obligations of
our county public health system."

* Findings of fact from San Francisco Health Commission
resolution urging the Board of Supervisors and the Mayor to
oppose Proposition 187:

- "Proposition 187's requirement that publicly-funded health
care facilities verify the immigration status of person
suspected to be undocumented will increase the likelihood
that immigrants will delay seeking timely medical attention
for fear of harassment or deportation.

- "This situation may result in a significant increase in the
number of persons treated in San Francisco General Hospital's
emergency room whose conditions might have been treated less
expensively in an outpatient facility.

- "Studies have consistently shown that prenatal care
services, for which undocumented women are eligible under
current law, significantly improve a woman's ability to
deliver a healthy baby and minimizes utilization of costly
neonatal care.

-"Denying undocumented children access to immunization
through publicly-funded facilities would reduce the already
low percentage (49%) of San Francisco two-year olds who are
fully immunized, and increase the risk of contagious disease
outbreaks among children.

- "California led the nation in AIDS deaths in 1992 and had
the second highest number of deaths from tuberculosis, and
failure to provide undocumented persons preventative and
treatment services for these and other contagious diseases
would hinder efforts to control the spread of these diseases
among the population as a whole.

- "Proposition 187 proposes to deny undocumented persons
incarcerated in the San Francisco County Jail and other
correctional facilities in California access to non-emergency
health care services and, thus, exacerbate the difficulty of
controlling the spread of contagious diseases among inmates,
employees and the population at large upon their release."

* Dr. Thomas Peters, Chairman, Association of Bay Area Health
Officials:

"The initiative would have us turn patients away from clinics
treating tuberculosis, HIV/AIDS, sexually-transmitted
diseases and other communicable diseases. Such a protocol
does not make the diseases disappear -- it leaves them
undiagnosed, untreated and unfettered. In one fell swoop, the
carefully crafted disease-control system in California would
be destroyed. Disease prevention cannot be done
selectively..."

"It is not just someone else's health that would be
threatened, it is yours."

Comment

This is just the beginning of a look at the medical and
public health consequences of Proposition 187; other areas
include childhood immunization, HIV confidentiality, and even
street-outreach disease prevention programs.

So far the media has failed to adequately inform the public
about the medical consequences of Proposition 187. If it
passes, these problems cannot be fixed by the legislature; a
new state-wide vote would be required. And even if some of
the provisions are permanently or temporarily blocked by
court decisions, much of the damage will be done anyway,
because many people will not know the technicalities, and
will avoid medical care due to fear.

It is the duty of the press and electronic media to let the
public know the consequences of its actions -- before, not
after, they are irrevocable. Reporters need only call medical
professionals involved in public health, and ask how their
work, and how the public, would be affected.


***** AIDS TREATMENT NEWS
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AIDS TREATMENT NEWS reports on experimental and
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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.

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ISSN # 1052-4207

Copyright 1994 by John S. James.  Permission granted for
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