Advertisement
The Body: The Complete HIV/AIDS Resource
Follow Us Follow Us on Facebook Follow Us on Twitter Download Our App
Professionals >> Visit The Body PROThe Body en Espanol
  Breaking News: FDA Approves Triumeq, New Once-Daily Combination Pill
  
  • Email Email
  • Printable Single-Page Print-Friendly
  • Glossary Glossary

AIDS Treatment News
May 17, 1996

Contents:

  1. NIH Scientists Find Cofactor for HIV Entry
  2. World Medicine and Western Medicine: The Missing Dialog -- Interview with Kaiya Montaocean, Co-Director, Center for Natural and Traditional Medicines
  3. Workshop on Traditional Healing and Policy, June 13 Near Washington, D.C.
  4. AIDS Treatment News Back Issues on Web
  5. Best Internet, Computer Sites on AIDS: Request for Information
  6. Computer Communication in Developing Countries: Request for Information
  7. AIDS and Media in Developing Countries: Request for Information
  8. Pharmaceutical Contributions and AIDS Organizations: Request for Input
  9. 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.

Advertisement
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.




  
  • Email Email
  • Printable Single-Page Print-Friendly
  • Glossary Glossary

This article was provided by AIDS Treatment News. It is a part of the publication AIDS Treatment News.
 

Tools
 

Advertisement