
AIDS TREATMENT NEWS Issue #247, May 17, 1996
   Phone 800/TREAT-1-2, or 415/255-0836

CONTENTS:

NIH Scientists Find Cofactor for HIV Entry

World Medicine and Western Medicine: The Missing Dialog -- 
Interview with Kaiya Montaocean, Co-Director, Center for 
Natural and Traditional Medicines

Workshop on Traditional Healing and Policy, June 13 Near 
Washington, D.C.

AIDS TREATMENT NEWS Back Issues on Web

Best Internet, Computer Sites on AIDS: Request for 
Information

Computer Communication in Developing Countries: Request for 
Information

AIDS and Media in Developing Countries: Request for 
Information

Pharmaceutical Contributions and AIDS Organizations: Request 
for Input

AIDS TREATMENT NEWS Policy on Pharmaceutical-Company Revenue


***** NIH Scientists Find Cofactor for HIV Entry

by John S. James

Researchers at the National Institute for Allergy and 
Infectious Diseases (NIAID), of the U.S. National Institutes 
of Health, have found a protein, named "fusin," which works 
together with the CD4 protein to allow HIV to fuse with and 
enter CD4 cells (T-helper cells). It has long been known that 
HIV uses the CD4 protein in order to enter and infect these 
cells. But also, it has long been known that the CD4 protein 
by itself is not enough, since HIV cannot fuse with most 
animal cells, even if they have been genetically altered to 
express human CD4. Some unknown "cofactor" must also be 
present. That is what has now been discovered.

This discovery of the fusin protein is widely considered to 
be a major advance in the understanding of how HIV disease 
develops. However, it does not seem to have immediate 
implications for treatment. For example, while fusin works 
for HIV strains that infect certain types of CD4-positive 
cells, it does not work for other strains that infect other 
types of CD4-positive cells, for example, macrophages. 
Presumably another cofactor, probably a related protein, 
functions for the HIV isolates that infect macrophages; in 
fact, there may be a whole family of fusin-like proteins. 
Also, fusin exists naturally on  human cells, where it must 
have some normal function, although this function is unknown; 
therefore, simply blocking fusin with an antibody, as has 
been done in laboratory tests, might not be a possible 
treatment.

How was fusin discovered? The procedure was described in a 
highly technical article(1), and less technically in a NIAID 
press release written for science writers(2). Basically, the 
scientists started with ordinary mouse cells in a laboratory 
culture. These cells were changed genetically so that they 
would express human CD4; this was done by means of a 
specially constructed virus, called a "vector," which carried 
the DNA sequence for human CD4 into the cells.

Also, a "library" of many DNA sequences (expressed by a human 
cell type known to be infectable by HIV) was introduced into 
the culture of mouse cells. It was expected that somewhere in 
the library must be the sequence for the cofactor being 
sought. A few of the mouse cells in the culture were then 
able to fuse (with other cells which expressed the HIV 
envelope protein on their surface), meaning that those mouse 
cells could fuse with (and potentially be infected by) HIV. 
(The researchers devised a method by which the fused cells 
would turn blue when treated with a special stain, allowing 
them to be easily seen and counted.) This fusion demonstrated 
that the library did indeed contain the sequence for the 
cofactor. The researchers then divided the human DNA library 
into fractions and tested again to see which fraction had the 
sequence of interest. By successive divisions, they narrowed 
the search until they found the protein they were looking 
for. Later, to confirm the discovery, the researchers 
genetically altering certain animal cells which normally 
cannot be infected by HIV, so that they could be infected.

Comment

This research would probably never have been done by 
pharmaceutical companies, which focus on practical 
applications of proprietary drug candidates, and seldom do 
the kind of basic research which prepares the groundwork for 
future treatment advances. Without government support, little 
basic science would take place. Pharmaceutical executives 
have often said that government must support such work. After 
potential products have come into view, industry is usually 
best in developing them.

Unfortunately there is still a major gap between where basic 
research ends and where drug development begins. No 
institution today has been effective in bridging this gap. 
That is why the immense discoveries in biology and other 
sciences have translated poorly into better treatments and 
cures.

References

1. Feng Y, Broder CC, Kennedy PE, and Berger EA. HIV-1 entry 
co-factor: functional cDNA cloning of a seven-transmembrane, 
G protein-coupled receptor. SCIENCE. May 10, 1996; volume 
272, pages 872-877.

2. NIAID news releases and other materials are available at 
the NIAID home page on the World Wide Web, 
http://www.niaid.nih.gov; select the "News releases" section 
to find the May 9 document, "NIAID Researchers Identify 
Cofactor for Entry of HIV into Cells."


***** World Medicine and Western Medicine:
The Missing Dialog -- Interview, Kaiya Montaocean, Co-
Director, Center for Natural and Traditional Medicines

by John S. James

A large majority of the world's people -- estimated by the 
World Health Organization at about 80% -- use their 
traditional medicines as primary health care. Yet almost all 
the funding and scientific attention go to the very expensive 
corporate/academic medicine from which the majority of the 
world is excluded. This great divide hurts everyone, 
including those who do have access to the Western scientific 
treatments, because even the newest drugs and discoveries are 
still clearly inadequate; and since traditional medical 
practices are largely ignored in scientific research and 
funding, important treatment leads are likely to be lost or 
greatly delayed.

Kaiya Montaocean, Ph.D. abd, and John Rutayuga, Ph.D., who is 
from Tanzania, have been working for years to bridge this 
divide with their Center for Natural and Traditional 
Medicines (CNTM), headquartered in Washington D.C., which 
focuses on traditional medicine as primary health care and 
has a particular interest in HIV/AIDS. The Center began in 
1988 within the Green Cross Clinic, at that time a Washington 
D.C. inner-city clinic specializing in traditional and 
alternative medicine. In 1988 Green Cross organized a World 
Conference on Traditional Medicines and AIDS, which was held 
in Washington that year at Howard University; Montaocean (who 
prefers to be called Kaiya, without the "Dr.") brought in 
traditional medicine scholars and practitioners from Africa, 
China, India, Central America, and South America. The African 
delegation proposed that Green Cross start a center; Kaiya, 
who was then doing clinical work at Green Cross, started 
CNTM, with Rutayuga, who had been a speaker with the African 
delegation at the Traditional Medicines conference, and with 
a third co-director, Vera Pratt.

Beginning with the Fifth International Conference on AIDS in 
Montreal (1989), CNTM has organized funding to bring 
traditional practitioners to each International Conference, 
in Montreal, San Francisco (1990), Florence (1991), Amsterdam 
(1992), Berlin (1993), and Yokohama (1994). (There was no 
international conference on AIDS in 1995, due to a change in 
schedule from yearly to every two years; the 1996 conference 
will be in Vancouver, and 1998 will be in Geneva.)

Currently CNTM is collaborating with a community-based center 
in Senegal, one in South Africa, one in the Caribbean among 
the Maroon people, a center in Brazil, and one in India. 
These centers work to bring together organizationally the 
traditional medical practitioners of their areas. In the next 
year or two, CNTM will focus on helping the centers which are 
already going, and those trying to establish themselves, be 
able to communicate with each other.

Kaiya, who has a background in physics and the arts and a 
Ph.D. abd in human ecology, then went on to study Chinese 
medicine, Native American medicine, and African medicine, 
through apprenticeship programs of several years' each.

The following interview took place on May 12, 1996

John S. James: What have you seen in AIDS treatment that 
should be getting more attention?

Kaiya Montaocean: What is happening now is alarming. The lack 
of genuine collaboration between biomedical professionals and 
those working in natural and traditional medicines is 
overwhelming. I have been a bridge, working between the 
biomedical professionals, and traditional peoples and their 
medicines. I have been able to see both sides of the bridge. 
The Center (CNTM) has focused on collecting information, 
disseminating information, and helping to create and sustain 
networks so that this dialog could continue.

Traditional medicine, the traditional peoples' voice, is the 
basis of a world health view. Western synthetic medicine is 
alternative; it is a crisis intervention medicine, very 
strong and suitable for short-term interventions. However, it 
is not economically feasible to produce this medicine for the 
entire world, the way that we have used it in the U.S. and 
Europe. But if we change our viewpoint on appropriateness, 
and put Western medicine in a context of world medicine, it 
could be used very effectively, to the benefit of everyone. 
In Europe and the U.S. we are overmedicated with the 
synthetics. We need to come into balance, too; you see this 
need in the large alternative/complementary medicine 
movements in the U.S. as well.

The knowledge of traditional medicine has been preserved 
through much sacrifice. There has been denial and lack of 
recognition. Traditional medical people have lived their 
lives under persecution for the last century and more. What 
they preserved of their knowledge, so that we can continue 
their work, they kept at a high price. For when the Western 
perspective came to the Americas, to Africa, and elsewhere, 
it came through violence, with the idea of stamping out the 
indigenous peoples' thought, and their perception of medicine 
and spirituality, and putting in its place a more colonially 
acceptable viewpoint of the world. Some that paid the highest 
price were the traditional medicine people -- whether in 
Europe with the witches, in Africa with the laws passed by 
colonial rulers against African traditional medicines, or in 
South America and Mexico where some of the first who were 
killed by the Conquistadors were the medicine people. Among 
the native people in the U.S., there has been a history of 
traditional doctors being killed; Geronomo himself was a 
medicine person, who took up war only after his family was 
annihilated.

In traditional medicines, there has been a long-standing 
viewpoint of wellness, stability, using the things around 
you, your mind, your body, your spirit, what you eat, 
exercises. Traditional medical practitioners use all of these 
in a systematic fashion to build their specific health 
systems. So what we have is an evolving, beautiful pattern of 
global health systems. This dynamic force is particularly 
important when we are trying to deal with a pandemic like 
AIDS, which is a global problem. The majority of people 
living with HIV are in countries where traditional health 
systems dominate. And with medicine so intricately tied to 
culture, it is imperative that we look at what these health 
systems have to offer in this crisis.

The problem today is that it is becoming harder to bring 
these two sides together, even to talk anymore. What I am 
being told by traditional medicine people, whom I have 
respected and worked with throughout the last ten years that 
I have been working on AIDS (as have they), is that they no 
longer want to take their energy to talk to people from the 
Western biomedical viewpoint. They feel that they have not 
been treated honorably, that their work has been taken, 
stolen, used inappropriately; they have not been invited on 
an equal basis to forums and conferences to discuss the 
issues of world medicine or AIDS in particular. Therefore 
they want to organize separately.

On the other side I have tried to reach and stay in contact 
with AIDS leaders involved in the World Health Organization, 
in the International Conference, in the International AIDS 
Society (in which I coordinate a caucus on alternative and 
traditional medicines), in the new AIDS organization of the 
United Nations. I have known the professionals leading these 
organizations for years. They are aware that CNTM is working 
with traditional people and working on AIDS. But when there 
is a dialog in which all of us should be involved, natural, 
alternative, and traditional medicines are the least and the 
last. Each year I have to go and beg. "Let us have a few 
dollars to bring some traditional people here. Let us have a 
place in the conference to talk about the treatment research 
the Chinese are doing in Tanzania. Let us have a few minutes 
to talk about the fact that the traditional doctors are 
organizing themselves on a regional basis to deal with AIDS 
in South Africa. Please let me have a few minutes to talk 
about what the Indians brought down the Amazon to the cities 
of Brazil for the people to try with AIDS, which is having 
some results." These professionals do not want to hear about 
such advances in the conferences, on an equal basis as they 
wish to hear about another clinical trial using AZT in 
combination with other corporate drugs. It seems to me, as a 
traditional medicine person and a scientist at the same time, 
that the conversations on the traditional Chinese work in 
Tanzania, on the Brazilian work, on the African work, are as 
interesting and important.

Our Center is funded solely by donations; we have no big 
contracts with anyone. When we organized the traditional 
medicines parts of the last six International Conferences on 
AIDS, we have had to find private money to do that, every 
year, as we have done since 1989 in Montreal. We have helped 
to organize the presentation of hundreds of abstracts, 
hundreds of speakers. But every time there seems to be no 
walking between, no one coming forward from the sector in 
which there are economic and scientific resources, to help 
make this happen. People have tried to help, but have been 
overruled by superiors who said that there was not enough 
empirical evidence to even consider this information.

This year, CNTM could not spend the considerable resources to 
make the international phone calls, send out mailings, do all 
of that, when our constituency, the traditional people, 
didn't really want to talk any more, because they thought no 
one was listening. So instead of going to Vancouver this year 
with even stronger presentations and data (there is more 
evidence now that some of the treatments and approaches are 
improving quality of life, and longevity), we will not be 
giving abstracts, or have big caucus meetings. The 
International AIDS Society never responded to budget requests 
made at the Yokohama conference (1994) to prepare for this 
caucus. There have been no funds made available from anyone 
to have this become part of the conference. In the last week, 
people have called me from around the world, asking why we 
are not organizing traditional medicine presentations this 
year; people from the Vancouver conference wanted us to. But 
with what resources?

Every year the traditional practitioners are the last to be 
considered. They are not exotic, primitive freaks, as some 
people have them pictured; these are the health workers from 
their communities. They are the medicine people of the world, 
and they deserve the respect of another culture, which 
happens to be more "scientific," happens to approach life in 
a different way.

As a person working in AIDS, trying to help alleviate that 
suffering in the world, I find this situation incredibly sad, 
because when the talking stops, the persons who ultimately 
lose are the patients. Even patients of Western doctors will 
likely also go to their Chinese doctor, take their vitamins 
and herbs, may see a psychic, or a body worker; they will 
select types of medicines for themselves. They should not be 
made to feel guilty, or pressured to hide it from one 
another, as at times I have seen that be very harmful.

And there is a much greater injustice to patients in those 
parts of the world where there are no Western medications for 
HIV, and they are told not to use their traditional 
medicines.

JSJ: The lack of treatment for a great majority of the 
world's population could become a bigger issue at Vancouver 
than it has in the past.

KM: When there are no other medicines available, we MUST look 
to what is around us; we cannot tell people who have this 
disease to just die.

JSJ: You mentioned the work in Tanzania, Brazil, and 
elsewhere. Can you give some examples of what is being done?

KM: In the last International Conferences, in Yokohama and 
before that in Berlin and Amsterdam, there were progressively 
more detailed studies presented about traditional and 
alternative medicines and AIDS. These studies started with 
very little funding and little technical support -- not like 
a study would start at the National Institutes of Health. 
They almost entirely started as community-based studies, and 
coalition, collaborative studies.

For example, one project was started by a coalition of 
Chinese doctors who came to Washington, D.C., to the Green 
Cross clinic, so they could observe their first cases of 
AIDS, as there were few cases in China at that time. China 
sent six of its finest thinkers in traditional medicine to be 
with us for almost two months. From that experience, they got 
some ideas about how they might use Chinese traditional 
medicine in treating AIDS. They returned to China and 
designed studies. They could not do them in the U.S., because 
we could not get permission through the FDA system, so those 
studies were done in Tanzania, under an agreement between the 
Chinese government and the Tanzanian government. For over 
four years now the researchers have been doing clinical 
trials using Chinese traditional medicine. They have shown 
both symptomatic improvement and longevity, and even a 
possibility of sero reversal; this was presented in 1992 at 
the Amsterdam international conference(1), in 1994 at the 
Yokohama conference(2), and published later in more 
detail(3). But there has been no move from any of the 
scientists who approached me after Dr. Weibo's presentation, 
so there could be a scientific dialog about how to study this 
in a more controlled way. The Chinese now want to do viral 
testing to monitor the virus itself, but there are no funds 
available, nor the necessary lab facility locally. It is not 
a question of whether these people want to do "pure" science 
or not; they do not have the technological support to do it. 
People in traditional medicines are not trying to hide what 
they are doing, but often there is not the technology or the 
resources in that community to do the kind of research done 
at NIH. This is also a problem in many parts of the U.S. 
Solving this problem is a question of communication, of 
dedication to global medicine beyond borders.

It is not a fight. There has been an antagonistic framework; 
I am not trying to blame anyone for it. We all have to do our 
best to face this problem together.

What is most disturbing now is the desire on both sides not 
to deal with each other. From conference organizers and 
biomedical professionals, I hear, "This is too much of a 
hassle. We have to pay for these people, they don't make 
their own money, they don't have institutions which support 
them, so we have to come up with this money. And then we do 
not understand each other's language." And on the other side, 
the traditional medical practitioners are saying, "You want 
to bring us out of our communities, our work, our livelihood, 
where we can make some money to feed our family, into these 
conferences, and we are not treated as equals. They do not 
listen to us, they act like we are some kind of strange 
thing, they argue with us when we tell them what is 
happening, they try to tell us it is not true. We don't want 
to go there and try to talk to them any more." This is the 
dilemma. 

CNTM will be in Vancouver this year, we will have a table, 
but I don't know what we will have beyond that, because to 
have more would require economic and logistical support, 
which has not been there. We are going back to less than we 
had in Montreal (in 1989).

JSJ: Have you looked into computer communication? It may be 
more effective on the whole than the international 
conference. It costs almost nothing to send a report to 
hundreds of different people throughout the world. Compare 
that to flying someone worldwide and putting them in a hotel.

KM: We have a Healing Roots Network, which is in about 40 
countries where people are working in traditional medicine as 
primary health care; it has a section on AIDS. Five years ago 
we proposed to set up electronic links between these hubs in 
different parts of the world. We designed regional systems 
for information to go from the hubs to the community level, 
through itinerant traditional doctors. The information would 
be read by a smaller group, then travel by word of mouth, as 
many of our people are illiterate. We could not obtain the 
funding. But now that the World Wide Web is set up, this 
could be an appropriate venue for us to start collaborating 
with others to make that happen.

Hopefully we can revive this initiative to allow traditional 
medical practitioners in different parts of the world to 
communicate with each other. They can keep their points of 
view. Even if they do not go to meetings where they are 
treated without respect, they can continue their work and can 
organize.

For More Information

For more information about projects of the Center for Natural 
and Traditional Medicine, contact CNTM, phone 202/234-9632, 
fax 202/332-2132, or mail to CNTM, P.O. Box 21735, 
Washington, D.C. 20009.

The international conferences have published hundreds of 
abstracts on traditional medicines. Also, CNTM has additional 
information on community sessions at these conferences, which 
the conferences did not include in the published abstracts.

After the Amsterdam conference in 1992, CNTM organized the 
Natural, Alternative, Traditional, and Complementary (NATC) 
Medicines Caucus of the International AIDS Society. The 
Caucus now has branches on every continent that are actively 
planning regional conferences on NATC therapies and AIDS. The 
Asian conference will be held later this year; the African 
conference is scheduled for the spring of 1997, and the 
European conference for September 1998.

References

1. Lu Weibo, Mbaga IM, Zhuang JD, Shao J, Wu BP, and others. 
China-Tanzania Coordinating Group of Experimental Therapy on 
AIDS. Treatment of 158 HIV-infected patients with traditional 
Chinese medicine in Dar es Salaam, Tanzania. Eighth 
International Conference on AIDS, Amsterdam, July 19-24, 1992 
[abstract # PoB3448].

2. Lu Weibo and others. Clinical observation on treating 112 
HIV-AIDS patients with glyke. Tenth International Conference 
on AIDS, Yokohama, August 7-12, 1994 [abstract # PB0868].

3. Lu Weibo. Prospect for study on treatment of AIDS with 
traditional Chinese medicine. JOURNAL OF TRADITIONAL CHINESE 
MEDICINE (China). March 1995; volume 15, number 1, pages 3-9.


***** Workshop on Traditional Healing and Policy, June 13 
Near Washington, D.C.

The HIV/AIDS Program of the National Council for 
International Health (NCIH) is sponsoring a one-day meeting, 
"Traditional Healing: A Community-Based Response to the 
HIV/AIDS Pandemic," Thursday, June 13, near Washington, D.C. 
This workshop immediately follows the NCIH annual conference 
(June 9 - June 12). From a description of the workshop:

"Traditional healers represent the largest and most 
established division of public health service providers. In 
much of the world, traditional healers are the most 
accessible and abundant (and sometimes the only) health 
resource available to the community. In addition, they are 
most often the initial and preferred choice -- whether for 
urban or rural inhabitants. Traditional healers offer 
information, counseling, and treatment to patients and their 
families in a personal manner and possess insightful 
familiarity with the environment of their clients. Despite 
this, traditional healers have rarely been included in key 
decision making, action agendas, and community programs in 
HIV/AIDS prevention and care. Does it make sense to overlook 
traditional healers when addressing HIV/AIDS, one of the most 
critical global issues of our century? What are the fears and 
misunderstandings of Westerners and traditional healers that 
create barriers to forming equitable working relationships? 
What needs to happen in order for Westerners and traditional 
healers to combine their unique resources to solve problems 
regarding HIV/AIDS prevention and care? How can funders, 
policy makers, and program planners become 'movers and 
shakers' to integrate traditional healers into the HIV/AIDS 
global agenda?"

Kaiya Montaocean (interviewed above) told us there will be 
excellent speakers, including traditional practitioners from 
around the world.

The workshop will be held from 9:00 a.m. to 4:00 p.m. at the 
Hyatt Regency Crystal City Hotel, near Washington; pre-
registration is $50 for non-members of NCIH, $35 for members; 
onsite registration is $15 more. Registration includes lunch 
and the workshop proceedings. For more information, contact 
NCIH, phone 202/833-5900, fax 202/833-0075, email 
ncih@ncih.org, 1701 K St. NW, Suite 600, Washington DC 20006.


***** AIDS TREATMENT NEWS Back Issues on Web

Back issues of AIDS TREATMENT NEWS, all the way to #1 which 
was published in April 1986, are now available at World Wide 
Web address http://www.immunet.org/atn. Users can search for 
any word or phrase appearing in any of our issues. Site 
design donated by Web developer LMN Design allows rapid 
downloading, and effective presentation with all common Web 
browsers.

This site was created and is operated for AIDS TREATMENT NEWS 
without charge by Immunet, a nonprofit organization with a 
mission of simplifying electronic access to AIDS and other 
healthcare information. Immunet, a small company with offices 
in New York, San Francisco, and Los Angeles, is also 
developing sites for continuing medical education, and for 
access to conference abstracts; it does not develop its own 
material, but helps others put their content onto the Web. 
Immunet receives in-kind support from WorldCom, a Lotus Notes 
network and Web service provider, and from Lotus Corporation, 
the developer of Notes software. Immunet produces educational 
material to pay the bills, and also does pro bono work for 
AIDS organizations which have information that should be more 
widely available. For more information, contact Patrick 
Cosson, 415/777-4460, fax 777-5013, 340 Townsend St., Suite 
410, San Francisco, CA 94107, email pcosson@immunet.org.


***** Best Internet, Computer Sites on AIDS: Request for 
Information

AIDS TREATMENT NEWS is preparing an Internet site which will 
not focus on our own material, but rather provide an 
annotated directory to AIDS treatment information available 
on the Internet or otherwise online, reflecting our judgment 
about which sites are most useful and important. We would 
like to hear from you about what sites have proven most 
useful. They do not need to be AIDS specific; for example, a 
general medical site could include important AIDS 
information.

We are also preparing a poster on the same topic for the 
International Conference on AIDS in Vancouver.

Let us know what has worked best for you. Contact Tadd Tobias 
at AIDS TREATMENT NEWS, email ttobias@aidsnews.org, or by 
phone at 415/255-0836, or by mail at AIDS TREATMENT NEWS, 
P.O. Box 411256, San Francisco, CA 94141.


***** Computer Communication in Developing Countries: Request 
for Information

AIDS TREATMENT NEWS is preparing a poster for the Vancouver 
conference on the use of computer communication in developing 
countries. We are particularly interested in successful use 
of computer communication despite problems such as limited or 
non-existent telephone lines, or widespread illiteracy. We 
are especially interested in social-organization approaches 
to overcoming these problems, but are also looking at 
technological approaches, such as radio, packet radio, and 
satellite communication.

Perhaps you could suggest a person or organization we could 
contact on this subject. We especially want to locate persons 
who have first-hand experience in this area.

If you might be able to help, contact John S. James, 
jjames@aidsnews.org, or 415/861-2432, or by mail at AIDS 
TREATMENT NEWS.


***** AIDS and Media in Developing Countries: Request for 
Information

Kate Krauss of ACT UP/Golden Gate will help teach a skills-
building workshop on media relations, at the Vancouver 
conference. She is now gathering information "to help 
determine what issues people in non-Western countries face in 
trying to change public opinion about the AIDS crisis... to 
identify some issues that can be used in this workshop." If 
you have information on practical problems encountered by 
groups doing media work in different developing countries, on 
practical skills the workshop should teach, on successful 
methods by which groups in your area draw attention to AIDS 
and influence opinion, and suggestions for others she should 
talk to, contact Kate Krauss, 1226 Church St. #11, San 
Francisco, CA 94114, phone 415/824-4417, fax 415/252-9277 
(with her name on the cover sheet), or email 
Kate_Krauss@out.org.


***** Pharmaceutical Contributions and AIDS Organizations: 
Request for Input

by John S. James

We have been invited to contribute an editorial to the daily 
newspaper of the XI International Conference on AIDS in 
Vancouver (July 7-12), on the issue of AIDS organizations 
accepting contributions from pharmaceutical companies. We 
would like to hear from persons with information or thoughts 
on this issue. Contact John S. James, jjames@aidsnews.org, or 
415/861-2432, or by mail at AIDS TREATMENT NEWS. We should 
hear by May 29, because a draft our editorial is due by the 
end of May.


***** AIDS TREATMENT NEWS Policy on Pharmaceutical-Company 
Revenue

by John S. James

AIDS TREATMENT NEWS has always had a policy of not accepting 
grants or contributions from companies whose products we 
cover or might cover. At the same time, we have never 
objected to other newsletters or organizations which do 
accept such income, and as a result can provide services more 
widely than we can. But our particular focus on investigative 
reporting requires maximum independence.

While we do not accept grants or contributions, we have 
always sold subscriptions, including to companies whose 
products we cover. In the last year we have become concerned 
about how to handle large orders, either for bulk 
subscriptions (a large number of subscriptions to different 
people in the same organization), or for a large number of 
copies of a single issues. Until a year ago, the total 
revenue from all our large orders (which we define as more 
than five subscriptions to the same organization, or more 
than five copies of a single issue) never accounted for more 
than 5% of our total income. But from January 1996 to date, 
the total from large orders has been almost 13 percent of our 
annual income. (The large orders are not only from 
pharmaceutical companies, but also include nonprofit or 
government organizations.)

We would never accept a subscription or other order tied in 
any way to an article; we did turn down one large order for 
that reason. But readers might also be concerned about what 
issues we take up, when our plate is always overflowing with 
potential stories we could cover. If an issue on the edge of 
the plate would be embarrassing to a large subscriber, might 
it fall off when it would not have otherwise? Could this bias 
our coverage, now or later?

We have not found a completely satisfactory policy on large 
orders. If we refuse to sell more than five subscriptions to 
one organization, we would be restricting our information 
from those who want it. If we allow the companies to reprint 
and distribute the information on their own for the 
additional subscribers, they will not get around to doing it; 
no such arrangement has ever worked for us, as it is too much 
out of their way for companies to set up an internal printing 
and distribution operation twice a month just for AIDS 
TREATMENT NEWS. If we send the additional subscriptions free 
or at cost, we are subsidizing some of the world's richest 
companies, at the cost of services we could be providing for 
our readers.

AIDS TREATMENT NEWS is entirely self-financed, almost all 
from subscriptions (we have also received a small proportion 
of our income from bequests and from unsolicited gifts). We 
have never accepted advertising, and always had a sliding 
scale so that we do not turn away people who cannot pay. We 
operate on under $300,000 per year, which includes premium, 
fast-turnaround printing, and first-class postage for 
subscriptions and for everything else we mail. We could do 
more if we had more resources. Therefore, we must think 
carefully before ruling out large orders as a potential 
income source.

For now we have decided to periodically disclose the 
proportion of our income which comes from large orders. We 
cannot, of course, disclose individual orders, since the 
privacy of our subscribers is absolute. We may develop 
additional policies in this area, and would like to hear from 
our readers about what you think is important.

Trips and Meals

In order to cover treatment news, we need to attend meetings 
in which companies present information about their products 
and/or research. Occasionally we have accepted travel and 
hotel expenses to attend; this happens about once or twice a 
year, and we do not use these trips for other business or 
personal purposes. Whenever we attend or speak at FDA 
Advisory Committee hearings, we always travel entirely at our 
own expense.

More common are business meals, including receptions at 
conferences. We need to attend these meetings as part of our 
news gathering. So far we have accepted the meals, which are 
rarely worth more than $25, as it has seemed more awkward 
than it is worth to insist on a separate check, or to refrain 
from eating at the receptions.

Note

To complete our disclosure, additional items should be 
listed.

In 1992 AIDS TREATMENT NEWS received a $2,000 contribution 
from Burroughs Wellcome Co. Instead of returning it, we 
signed the check over to a New York treatment activist, now 
deceased, so that he could attend the International 
Conference on AIDS in Amsterdam and present information on 
alternative treatments.

At about that time we received a microwave oven from APP, a 
mail-order pharmacy. We donated it to the Center for Positive 
Care, at that time a San Francisco agency set up as a common 
location for AIDS/HIV service organizations.

In 1993 AIDS TREATMENT NEWS collaborated with IGLHRC, the 
International Gay and Lesbian Human Rights Commission, to 
publish a special International Edition of our newsletter; we 
had treatment information, IGLHRC had international contacts. 
The edition was to appear four times a year, and consist 
mainly of reprints of treatment articles of most importance 
internationally, especially for developing countries. Despite 
considerable research we could not find any U.S. foundation 
willing to fund this project. In view of the importance of 
treatment information for people in developing countries, we 
decided to make a one-time exception to our policy on 
industry funding, and applied to several pharmaceutical 
companies. None of them were willing to fund the 
International Edition, however, so we did not receive any 
money. We published three issues at our own expense, then 
phased out this project in favor of Internet distribution, 
which is more effective and costs us almost nothing to reach 
people worldwide.

Note: AIDS TREATMENT NEWS is not organized as a nonprofit, 
but as a sole proprietorship owned by its founder, John S. 
James. It does not accumulate a profit, but spends the money 
it receives on improving the newsletter and services. We are 
currently developing a nonprofit to take on the charitable 
work (including subscriptions to prisoners, organizations in 
developing countries, and others who cannot afford a 
subscription) that we have been doing for free.


***** AIDS TREATMENT NEWS
      Published twice monthly

Subscription and Editorial Office:
   P.O. Box 411256
   San Francisco, CA 94141
   800/TREAT-1-2  toll-free U.S. and Canada
   415/255-0588 regular office number
   fax: 415/255-4659
   Internet: aidsnews@aidsnews.org
Editor and Publisher:
   John S. James
Reader Services and Business:
   Richard Copeland
   Thom Fontaine
   Denny Smith
   Tadd Tobias

Statement of Purpose:
AIDS TREATMENT NEWS reports on experimental and 
standard treatments, especially those available now. We 
interview physicians, scientists, other health 
professionals, and persons with AIDS or HIV; we also 
collect information from meetings and conferences, 
medical journals, and computer databases. Long-term 
survivors have usually tried many different treatments, 
and found combinations which work for them. AIDS 
Treatment News does not recommend particular 
therapies, but seeks to increase the options available.

Subscription Information: Call 800/TREAT-1-2
   Businesses, Institutions, Professionals: $230/year.
   Nonprofit organizations: $115/year.
   Individuals: $100/year, or $60 for six months.
   Special discount for persons with financial difficulties:
   $45/year, or $24 for six months. If you cannot afford 
   a subscription, please write or call.
   Outside North, Central, or South America, add air mail 
   postage: $20/year, $10 for six months.
   Back issues available.
   Fax subscriptions, bulk rates, and multiple subscriptions
   are available; contact our office for details.
   Please send U.S. funds: personal check or bank draft, 
   international postal money order, or travelers checks. 
   VISA, Mastercard, and purchase orders also accepted.

ISSN # 1052-4207 

Copyright 1995 by John S. James.  Permission granted for 
noncommercial reproduction, provided that our address 
and phone number are included if more than short 
quotations are used.

