Subject: AIDS TREATMENT NEWS #208
From: "John S. James" <[email-masked]>
Date: 02 Oct 94 21:16 PDT

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 312/899-1772.

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 510/547-8548.

* 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
      Published twice monthly

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Editor and Publisher:
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AIDS TREATMENT NEWS reports on experimental and 
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interview physicians, scientists, other health 
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collect information from meetings and conferences, 
medical journals, and computer databases. Long-term 
survivors have usually tried many different treatments, 
and found combinations which work for them. AIDS 
Treatment News does not recommend particular 
therapies, but seeks to increase the options available.

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ISSN # 1052-4207 

Copyright 1994 by John S. James.  Permission granted for 
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